Hanne Cathrine Lie

• Ilic, Anica; Juvet, Lene Kristine; Cairns, Patrick; Thornton, Kristen Elizabeth Thompson & Lie, Hanne Cathrine (2026). Patient-Facing AI-Enabled Digital Health Technologies and Quality of Life in Cancer: Systematic Review and Exploratory Meta-Analysis. JMIR mhealth and uhealth. 14. doi: 10.2196/94793. Full text in Research Archive
• Breivik, Jarle & Lie, Hanne Cathrine (2026). Framing analysis as a pedagogical tool for broadening medical students’ understanding of cancer: a course evaluation. BMC Medical Education. 26(1). doi: 10.1186/s12909-026-09851-y. Full text in Research Archive Show summary

  Background Cancer is a complex phenomenon encompassing a range of cultural and biomedical dimensions. Traditional medical curricula often fail to reflect this complexity, highlighting the need for interdisciplinary approaches that help medical students develop a more integrated understanding of disease by connecting diverse knowledge, patient perspectives, and societal contexts. This study evaluates how framing analysis—a method from communication studies—can be used as a pedagogical tool to broaden medical students’ understanding and critical thinking about complex health issues, using cancer as a key example. Methods We conducted a course evaluation of a two-week elective titled “Cancer Communication” within the University of Oslo’s medical program, offered annually to approximately 20 third-year students. Working in teams, students explored research questions related to cancer communication through lectures, workshops, guided research, and excursions. They learned framing analysis by applying a published tool for examining public cancer discourse. Anonymous pre-course free associations and post-course reflections were analyzed thematically to identify changes in students’ understanding of cancer during the course. Students’ team presentations, orally evaluated as part of the final course examination, supported our assessment of how students applied framing analysis to cancer-related communication topics. Results Students’ initial responses reflected relatively simple and emotionally charged associations with cancer, often centered on fear, death, treatment burden, and familiar cancer stereotypes. Their post-course reflections suggested increased media literacy, critical thinking, and the ability to integrate multiple narratives about cancer. In their final presentations, students applied framing analysis to critically evaluate media portrayals and reflect on how different framings shape public and professional perceptions of disease. The post-course reflections further suggested greater empathy for cancer patients and an increased awareness of social and cultural influences on medical practice. Conclusions Integrating framing analysis into medical education appeared to broaden students’ understanding of cancer as a multidimensional phenomenon, supporting reflective and interdisciplinary thinking and encouraging them to move beyond traditional biomedical perspectives. These findings suggest that framing analysis and similar communication-based approaches may serve as useful pedagogical tools in health professions education to enhance critical reflection.

• Johansen, Sara Hassing; Edvardsen, Elisabeth; Raastad, Truls; Ruud, Ellen; Deng, Wei Hai & Bratteteig, Mari [Show all 10 contributors for this article] (2026). Associations Between Physical Fitness and Fatigue in Adolescent Childhood Cancer Survivors: The PACCS Study. Pediatric Blood & Cancer. ISSN 1545-5009. doi: 10.1002/1545-5017.70478. Full text in Research Archive
• Vatne, Torun Marie; Pedersen, Elise Olsen & Lie, Hanne Cathrine (2026). Reactions, Adaptation, and Support Needs of Siblings of Children with a Life-Limiting Disease: The Parents’ Experiences. Children. 13(5). doi: 10.3390/children13050620. Full text in Research Archive
• Meshkovska, Biljana; Zolfaghari, Mahshid; Brandvik, Caroline Løvik; Klepp, Knut-Inge; Kopainsky, Birgit & Lie, Hanne Cathrine [Show all 7 contributors for this article] (2026). Adoption of the Norwegian School Fruit Program: A Qualitative Study on Barriers and Facilitators. Global Implementation Research and Applications. doi: 10.1007/s43477-026-00238-1. Full text in Research Archive Show summary

  The Norwegian School Fruit Program is financed by parents or local municipalities. The aim of this study was to explore contextual barriers and facilitators that influence the adoption of the program by schools using the Context and Implementation of Complex Interventions (CICI) framework. We conducted semi-structured interviews with 21 participants (mainly principals) from 20 lower secondary schools (classes 8–10). We analyzed the data using a deductive qualitative approach based on the CICI framework. We compared findings across schools offering the program (1) with no-parental-payment, (2) by parental subscription, and schools that (3) discontinued or (4) never offered the program. Economic costs were perceived as the main barrier to adoption across all schools. Although most schools recognized the need for such a program, some preferred to make their own arrangements. Except for schools offering the parental subscription option, many schools perceived asking parents to pay for the program as unfair, not in line with Norwegian values, and unlikely to allow the program to reach those who need it the most. Further barriers were the lack of legislation making the program obligatory and potential political changes causing uncertainty regarding the programme’s continuation from one year to the next. Social aspects of eating together were recognized as a facilitator. Food provision programs should be compatible with school priorities such as academic performance and mental health. Context and setting are dynamic and should be continuously evaluated to ensure they are in line with evolving school priorities and needs.

• Willumsen, Lise Haldorsen; Smeland, Knut Halvor Bjøro; Eikeland, Siri Asheim; Fosså, Alexander; Bersvendsen, Hanne Skjerven & Fagerli, Unn Merete [Show all 10 contributors for this article] (2026). Self-reported late effects and chronic fatigue, information needs and follow-up in long-term survivors of Hodgkin lymphoma—a cross-sectional study. Supportive Care in Cancer. ISSN 0941-4355. 34(5). doi: 10.1007/s00520-026-10625-x. Full text in Research Archive
• Taylan, Fulya; Janhonen, Joel; Ekholm, Katja; Bajalica-Lagercrantz, Svetlana; Becker, Stefan & Benneche, Andreas [Show all 41 contributors for this article] (2025). The Nordic ChiCaP Network: An interdisciplinary approach to childhood cancer predisposition. Rare . ISSN 2950-0087. 3. doi: 10.1016/j.rare.2025.100111. Full text in Research Archive Show summary

  Testing for Childhood Cancer Predisposition (ChiCaP) syndromes is increasingly common in pediatric oncology as early identification can help adapt treatment and initiate surveillance. As such, ChiCaP testing can have medical, ethical, and psychological consequences for both the patients and their families, and present significant diagnostic challenges for pediatric oncologists. In response to these new opportunities and challenges, the Nordic ChiCaP Network was established in 2021, bringing together experts from pediatric and adult oncology, clinical genetics, molecular genetics, bioinformatics, epidemiology, psychology, anthropology, community medicine, law and ethics. Its primary goal is to advance our knowledge of ChiCaP in pediatric oncology research and care through an interdisciplinary approach. The network aims to achieve several key objectives: (1) to improve ChiCaP diagnostics, including gene-associated phenotypes and variant interpretation; (2) to advance understanding of the natural history, cancer risks, adverse treatment reactions, and comorbidities associated with ChiCaP syndromes; (3) to optimize and harmonize treatment protocols and surveillance strategies for affected patients and their families; (4) to address the ethical, legal and psychosocial aspects involved in testing, communication and counseling, diagnosing ChiCaP syndromes, and the impacts of surveillance on patients and their families; (5) to identify novel ChiCaP syndromes and explore their underlying mechanisms; and (6) to facilitate translation of research findings into clinical practice. By gathering interdisciplinary expertise and fostering collaboration across the Nordic countries, the Nordic ChiCaP Network will enhance knowledge and awareness of ChiCaP, improve early diagnosis, patient care, family support, and contribute to a better understanding of these complex genetic conditions.

• Zolfaghari, Mahshid; Lien, Nanna; Brandvik, Caroline Løvik; Klepp, Knut-Inge; Kopainsky, Birgit & Lie, Hanne Cathrine [Show all 7 contributors for this article] (2025). Understanding the dynamics of implementing the Norwegian School Fruit Programme: integrating implementation science and system dynamics | Implementation Science Communications. Implementation Science Communications. p. 1–48. doi: 10.1186/s43058-025-00834-6. Full text in Research Archive Show summary

  Many implementation determinants of school nutritional interventions have been identified, but a deeper understanding of their interplay within a system is needed. The present study aimed to investigate how the Norwegian School Fruit Programme, particularly the No Parental Payment Programme (NPPP), is being implemented in schools and how it interacts with the school system structure and dynamics as perceived by school personnel and pupils. Moreover, it aimed to understand the dynamic interplay between the determinants of the Consolidated Framework for Implementation Research (CFIR) in the NPPP’s context. The overarching methodology was qualitative system dynamics modelling, with data collected through a series of group model building (GMB) workshops at four schools offering the NPPP. Using GMB scripts, facilitated discussions between school personnel and pupils were held for a better understanding of the NPPP’s implementation dynamics and to create diagrams illustrating how implementation determinants interact with each other and each school’s unique context. The individual school diagrams were compiled into a single diagram. The CFIR was subsequently mapped on to this diagram. Lack of communication with pupils, the food stores outside schools, and the NPPP’s design weakened the reinforcing mechanism that fostered pupils’ eating of fruit. Not eating enough of the fruit increased implementation costs because schools had to deal with leftover fruit and littering issues. Implementation costs caused schools to adopt implementation processes, like reflecting, engaging, and adapting to reduce the costs, although some of these did not work or counterintuitively decreased pupils’ eating of fruit. The success of these processes was contested by the design of the NPPP and mechanisms that were shaped by the goals and priorities of the schools. This research employed qualitative system dynamics to investigate NPPP implementation dynamics. Recommendations for improving implementation include aligning NPPP’s design with pupils’ preferences, monitoring eating of fruit, and involving internal stakeholders (pupils and school personnel) for gathering feedback, and external stakeholders (municipalities) for monitoring.

• Egenberg, Herman Escher; Lie, Hanne Cathrine; Gerwing, Jennifer & Menichetti, Julia (2025). Expert recommendations on sharing medical information with patients: a qualitative study. BMC Health Services Research. 25(1). doi: 10.1186/s12913-025-13223-5. Full text in Research Archive Show summary

  Background Sharing medical information with patients is essential for patient-centered care, yet empirical research to guide information sharing in clinical practice is inconsistent and scattered across disciplines. Clinicians rarely use established models for sharing information, and patients inconsistently understand and remember the information shared. Objective Explore experts’ views on the task of sharing information. Design Qualitative study using semi-structured interviews and reflexive thematic analysis. Participants We recruited fifteen expert clinical communication teachers from six countries, using the snowball method. Approach Interviews were recorded, transcribed, and analysed by authors with both clinical, teaching and research experience, using reflexive thematic analysis. Results We conceived four themes addressing the task of sharing information. The overarching theme was: (1) Sharing information with patients should be a dialogue, not a lecture. Further, to improve how they share information with patients, clinicians might want to: (2) Help the patient process emotions; (3) Explore the patient’s knowledge and perspective; (4) Tailor and structure the information. Each theme included common challenges and solutions for clinicians. Conclusions The findings align with and expand current models for communicating with patients. The themes integrate knowledge from different disciplines, such as psychology, medicine and communication science. The findings provide support for the role of information sharing in patient-centered care and shared decision making. The findings can guide clinicians in the task of sharing information with patients and shape curriculum and training development.

• Tunheim, Kristoffer Joe; Papageorgiou, Constantinos; Lie, Hanne Cathrine; Munkhaugen, John & Dammen, Toril (2025). Experiences of the attention training technique delivered in groups as treatment for anxiety and depression in patients with coronary heart disease: a qualitative study. BMC Psychiatry. 25. doi: 10.1186/s12888-025-07027-4. Full text in Research Archive Show summary

  Background Clinically significant anxiety and depression symptoms are common in patients with coronary heart disease (CHD) and associated with a range of negative outcomes. Preliminary evidence suggests that the attention training technique (ATT), a component of metacognitive therapy (MCT), delivered in a group format, is feasible and potentially effective in reducing symptoms of anxiety and depression in these patients. Patients’ experiences of treatment including facilitators and barriers are useful in order to further develop effective intervention. We are not aware of any previous qualitative studies conducted on ATT in patients with CHD. Our study aimed to assess the treatment experiences in these patients. Methods Patients (N = 10) with CHD and significant symptoms of anxiety and/or depression, who participated in a randomized controlled trial of the effectiveness of ATT delivered in a group format, were recruited to in-depth, individual interviews three months after treatment completion. The interviews were recorded, transcribed and analysed according to the principles of thematic analysis. Results Nine males and one female participated, with a mean age of 54.3 (range 45–63) years. Mean time since cardiac event was 54.2 months. We identified two main themes; non-specific ATT treatment factors and group ATT-specific treatment factors. Furthermore, non-specific ATT treatment factors included subthemes relating to individual and group factors. These subthemes encompassed the (relational aspects such as the) interaction between the group patients, interaction between the patients and the therapist, and the therapist’s delivery of the group ATT. Second, specific ATT treatment factors included subthemes concerning understanding and making sense of the technique and treatment, changes in relation to thoughts and thinking, and group format as a facilitator of ATT treatment. Conclusions Group ATT was perceived as helpful among outpatients with CHD in terms of symptom relief. Both general and ATT specific factors were regarded important, and the patients seemed to understand ATT in a way that is consistent with the rationale of ATT treatment. All patients emphasized the importance of the group format.

• Larsen, Elna Hamilton; Ålykkja, Anette; Mellblom, Anneli; Ruud, Ellen; Wahl, Astrid Klopstad & Lie, Hanne Cathrine (2025). The Development and Feasibility Testing of the Nurse-Led Transitioning Adolescents Off Cancer Treatment (TACT) Intervention. Journal of Advanced Nursing. ISSN 0309-2402. 81(9), p. 6047–6063. doi: 10.1111/jan.16750. Full text in Research Archive Show summary

  Aim To develop and assess the feasibility of a nurse-led intervention aimed at improving the transition from cancer treatment to survivorship for adolescents by providing personalised information and psychosocial and self-management support. Design Intervention development through co-creation with adolescent patients with cancer, their parents and health care professionals, based on the MRC framework and qualitative feasibility testing. Methods The intervention development involved three steps: (a) identifying the problem through interviews with key stakeholders and by reviewing existing evidence on transition tools and practices; (b) designing the intervention through co-creation workshops with stakeholders and (c) assessing feasibility, acceptability and participants' experiences of the intervention through interviews with adolescents, parents, healthcare professionals and teachers. Results The Transitioning Adolescents with Cancer off Treatment (TACT) intervention was developed, and feasibility was tested between October 2021 and October 2022. TACT included two nurse-led consultations addressing transition concerns and a videoconference with local support networks to inform and activate stakeholders. Communication tools were developed and successfully used to address adolescents' needs, tailor information and support self-management. Conclusion The nurse-led TACT intervention appears feasible and acceptable for clinical practice, with no major changes needed. Participants reported that the intervention helped prepare adolescent cancer patients to transition to survivorship by providing tailored information and psychosocial and self-management support. Impact Despite high survival rates of childhood cancers and the growing awareness of the challenges adolescents and their families face when transitioning off treatment to survivorship, few interventions are available. The novel TACT intervention indicates that nurses are well-positioned to provide broad, tailored care addressing survivors' multi-faceted needs and challenges associated with this transition. Report Method Consolidated criteria for reporting qualitative research (COREQ). Patient or Public Contribution Adolescent survivors, their parents, nurses and physicians involved in their care contributed through co-creation groups, contributing feedback that shaped and refined the TACT intervention.

• Zolfaghari, Mahshid; Meshkovska, Biljana; Brandvik, Caroline Løvik; Kopainsky, Birgit; Klepp, Knut-Inge & Lie, Hanne Cathrine [Show all 7 contributors for this article] (2025). A Systems Perspective on the Drivers of Adoption of the Norwegian School Fruit Scheme. Global Implementation Research and Applications. 5, p. 336–348. doi: 10.1007/s43477-025-00173-7. Full text in Research Archive Show summary

  Successful adoption of evidence-based primary prevention interventions by schools is important for public health but relies on multiple factors. Using a systems perspective enables the identification of the interconnectivity and feedback loops among these factors, which can facilitate or hinder adoption. This study aimed to conceptualize a system structure showing how adoption factors are interrelated, and which feedback loops influence schools’ decisions to adopt interventions, using the parent-paid Norwegian school fruit scheme (the parent-paid scheme) as a case. We interviewed principals and personnel (n = 7) from schools that adopted, de-adopted, or never adopted the parent-paid scheme. These interviews were analyzed using qualitative system dynamics modeling. The analysis resulted in a causal loop diagram representing a system structure driving schools’ adoption decisions. The preliminary results were validated during a workshop with new participants who hold decision-making roles in schools (n = 5). Due to previous experiences with a free scheme, some schools perceived the parent-paid scheme’s relative advantages as low, which, in synergy with schools’ preference to offer it for free to pupils, resulted in the parent-paid scheme never being adopted. Nevertheless, there were schools that adopted the parent-paid scheme, driven by feedback loops like perceived need and relative advantages. These feedback loops, however, weakened over time as de-adoption resulted from a lack of demand from parents and pupils. Taking a systems perspective offered a temporal view of adoption processes, revealing how past decisions, like de-adopting a free scheme, influence future decisions. It highlighted how reinforcing feedback loops, like perceived need, set schools on adoption paths. Finally, it identified gaps in information flow, including those necessary for adaptation, as potential missing feedback loops to continuous adoption. As such, the schools’ decision to adopt the parent-paid scheme is a dynamic process with systemic characteristics that should be considered when developing strategies to ensure adoption.

• Johansen, Sara Hassing; Sæter, Mali; Sarvari, Sebastian; Reinertsen, Kristin Valborg; Edvardsen, Elisabeth & Wisløff, Torbjørn [Show all 18 contributors for this article] (2025). Effects of Aerobic Exercise on Cardiorespiratory Fitness and Cardiovascular Risk Factors in Long-Term Breast Cancer Survivors: A Randomized Controlled Trial. JACC: CardioOncology. 7(4), p. 414–426. doi: 10.1016/j.jaccao.2025.04.006. Full text in Research Archive
• Bøhn, Synne-Kristin Hoffart; Oldervoll, Line Merethe; Reinertsen, Kristin Valborg; Selland, Mette; Fosså, Alexander & Kiserud, Cecilie E. [Show all 17 contributors for this article] (2024). The feasibility of a multidimensional intervention in lymphoma survivors with chronic fatigue. Supportive Care in Cancer. ISSN 0941-4355. 32(1). doi: 10.1007/s00520-023-08204-5. Full text in Research Archive Show summary

  Purpose: Chronic fatigue (CF) affects 25–30% of lymphoma survivors, but interventions designed to reduce fatigue are lacking. The main aim of this study was to test the feasibility of a multidimensional intervention study in lymphoma survivors with CF. Secondary aims were to describe individual changes in fatigue, quality of life (QoL) and physical performance from pre (T0) to post (T1) intervention. Methods: This feasibility study was as a one-armed intervention study performed in 2021. Hodgkin or aggressive non-Hodgkin lymphoma survivors received mailed study information and Chalder Fatigue Questionnaire and were asked to respond if they suffered from fatigue. The 12-week intervention included patient education, physical exercise, a cognitive behavioural therapy (CBT)-based group program and nutritional counselling. Feasibility data included patient recruitment, completion of assessments, adherence to the intervention and patient-reported experience measures. Participants responded to questionnaires and underwent physical tests at T0 and T1. Results: Seven lymphoma survivors with CF were included. Of all assessments, 91% and 83% were completed at T0 and T1, respectively. Adherence to the interventional components varied from 69% to 91%. At T1, all participants rated exercise as useful, of whom five rated the CBT-based program and five rated individual nutritional counselling as useful. Five participants reported improved fatigue, QoL and physical performance. Conclusion: Lymphoma survivors with CF participating in a multidimensional intervention designed to reduce the level of fatigue showed high assessment completion rate and intervention adherence rate. Most of the participants evaluated the program as useful and improved their level of fatigue, QoL and physical performance after the intervention.

• Deng, Wei Hai; Lie, Hanne Cathrine; Ruud, Ellen; Loge, Jon Håvard; Kiserud, Cecilie E. & Rueegg, Corina Silvia (2024). Profiles of Fatigue and Psychological Symptoms in Long-Term Childhood, Adolescent, and Young Adult Cancer Survivors—The NOR-CAYACS Study. Cancer Medicine. 13(22). doi: 10.1002/cam4.70425. Full text in Research Archive Show summary

  Introduction Long-term childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of fatigue and psychological problems. However, their interactions remain largely unexplored. Understanding how they cluster can inform treatment and person-centered follow-up care. We aimed to identify and describe profiles of co-occurring fatigue and psychological symptoms and investigate their associations with health-related quality of life (HRQOL) in CAYACS. Methods NOR-CAYACS (The Norwegian Childhood, Adolescents and Young Adult Cancer Survivors study) was a nationwide survey involving adult survivors of any childhood cancer (aged < 19 years at diagnosis) and selected young adult cancers (breast and colorectal cancers, non-Hodgkin lymphoma, leukemias, and malignant melanomas, aged 19–39 years at diagnosis) identified through the Cancer Registry of Norway. We included 1893 survivors aged ≥ 18 years, ≥ 5 years since diagnosis. We performed latent profile analysis with six continuous outcomes: physical and mental fatigue, depression, anxiety, post-traumatic stress symptoms, and fear of recurrence. Results We identified an overall “Low” (64%), a “Moderate fatigue/high anxiety” (18%), a “High fatigue/moderate distress” (13%), and an overall “High” (5%) symptom burden profile. The “High” profile exhibited lowest physical- and mental-HRQOL with T-scores −9.8 (95% confidence interval [95% CI]: −12.5, −7.1) and −25.0 (95% CI: −26.7, −23.3) compared to the “Low” profile. Conclusion We identified four profiles, two characterized by high fatigue and two near normative fatigue levels, each with different psychological symptom burden. Greater symptom burden corresponded to lower HRQOL, with high fatigue profiles showing lower physical HRQOL. These profiles help identify at-risk individuals and allow for targeting interventions and follow-up care to survivors' unique constellation of symptoms.

• Stub, Trine; Mathisen, Marleen; Thorsen, Lene; Kiserud, Cecilie E. & Lie, Hanne Cathrine (2024). Experiences Using Nonpharmacological Interventions for Chronic Fatigue: A Focus Group Study of Long-Term Survivors of Young Adult Cancers With Fatigue. Cancer Reports. 7(9). doi: 10.1002/cnr2.2139. Full text in Research Archive Show summary

  Background: Cancer-related fatigue is a common and distressing late effect of cancer that can persist for decades after treatment completion. Although negatively affecting survivors' quality of life, few, if any, efficacious interventions for persistent, or chronic, fatigue exist.<p> <p>Aims: To inform future interventions, we explored how long-term, young adult cancer survivors (YACSs) with chronic fatigue live with, and manage their fatigue over time, including their experiences with nonpharmacological interventions (NPIs) for chronic fatigue. <p>Methods and Results: We conducted a qualitative focus group study with 15 YACSs (13 women) with chronic fatigue, on average 7.3 years post-diagnosis. The YACS were identified and recruited through a nationwide health survey of cancer survivors (the NOR-CAYACS study). Systematic content analysis was used to identify recurrent themes. Analysis revealed five themes: (1) manifestation of fatigue, detailing chronic fatigue experiences; (2) impact on daily life, highlighting the necessity to balance rest and activity, affecting relationships; (3) NPIs, where walks in nature were notably beneficial; (4) barriers to fatigue management, including energy deficits, treatment-related bodily changes, and self-care prioritization challenges; (5) facilitators to fatigue management, emphasizing the need for regular breaks, self-care practices, and the importance of fatigue management education. <p>Conclusion: This study offers novel insights into the lived experiences of YACSs with chronic fatigue, a subject scarcely examined in prior research. Our findings highlight the significant impact of chronic fatigue and the individualized strategies YACSs use to cope. The research emphasizes the need for personalized interventions to support chronic fatigue management, marking a critical step forward in addressing this often-overlooked issue in survivorship care. Future research should focus on tailored approaches to improve YACSs' quality of life.

• Bratteteig, Mari; Rueegg, Corina Silvia; Lie, Hanne Cathrine; Thorsen, Lene; Larsen, Elna Hamilton & Larsen, Marie Hamilton [Show all 14 contributors for this article] (2024). Physical activity behaviors and screen time in young childhood cancer survivors: the Physical Activity in Childhood Cancer Survivors Study. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-024-01671-7. Full text in Research Archive Show summary

  Purpose: In childhood cancer survivors (CCS), high physical activity (PA) and low sedentary time may reduce risks of late-effects. PA behaviors and screen time, and how they relate to moderate-to-vigorous PA (MVPA) in CCS, are largely unknown. We examined PA behaviors and screen time, and their cross-sectional associations with MVPA. Methods: CCS from any cancer diagnosis (≥ l year post-treatment), aged 9–16 years at study, were eligible in the international Physical Activity in Childhood Cancer Survivors (PACCS) study. PA behaviors (school transport, intensity-effort in physical education (“PE intensity”), leisure-time PA) and screen time were assessed by self-report, and MVPA by accelerometers (ActiGraph GT3X-BT). Multivariable linear regressions were used to assess associations between PA behaviors and screen time with MVPA. Results: We included 481 CCS (48% girls, mean age 12.2 years). Passive school transport (prevalence 42%) was associated with 10% lower MVPA/day (β = 6.6 min, 95% CI 3.3–10.0), low PE

• Larsen, Elna Hamilton; Wahl, Astrid Klopstad; Ruud, Ellen; Mellblom, Anneli; Ålykkja, Anette & Lie, Hanne Cathrine (2024). Adolescent Cancer Survivors and Their Parents’ Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study. Journal of Pediatric Hematology/Oncology Nursing (JOPHON). ISSN 2752-7530. 41(3), p. 172–187. doi: 10.1177/27527530231214528. Full text in Research Archive
• Getz, Vilde; Munkhaugen, John; Lie, Hanne Cathrine & Dammen, Toril (2023). Barriers and facilitators for smoking cessation in chronic smokers with atherosclerotic cardiovascular disease enrolled in a randomized intervention trial: A qualitative study. Frontiers in Psychology. 14. doi: 10.3389/fpsyg.2023.1060701. Full text in Research Archive Show summary

  Objectives: Smoking is common in patients with cardiovascular disease. Despite strong recommendations for cessation and the existence of efficacious pharmacological and behavioral interventions, cessation rates remain low. Therefore, in this study, we explore perceived facilitators and barriers to smoking cessation in patients with atherosclerotic cardiovascular disease who have participated in a cessation intervention study. Methods: Participants (N = 10) from the intervention arm of a randomized controlled study with access to free cessation support and pharmacological aids completed a semi-structured, in-depth telephone interview after a 6-monthfollow-up between October 2021 and July 2022. The interviews were audio recorded, transcribed, and analyzed according to principles of thematic analysis. Results: The mean age was 65.7 (range: 55–79) years, and three of the 10 participants were women. Among the participants, five had quit smoking, three had relapsed, and two were persistent smokers. The themes identified encompassed barriers and facilitators to cessation, both including individual and contextual factors. Barriers included the upsides of smoking, difficult life situations, addiction to smoking, smoking in social circles, perceived lack of support and understanding from health professionals. Facilitators included intrinsic motivation, concerns about the health condition, financial implications, specific behavioral strategies, positive influence from the social environment, and helpful components of the cessation intervention. Conclusion: Smokers with cardiovascular disease who have attended a cessation intervention study report several facilitators weighted against barriers, interacting with the intention to cease smoking. The most important potentially modifiable factors of significance for cessation identified may be addressed through motivational interviews and focus groups with other smokers.

• Holme, Ida K.; Hollund, Henrikke A.; Vandraas, Kathrine Flørenes; Kiserud, Cecilie E.; Reinertsen, Kristin Valborg & Loge, Jon [Show all 7 contributors for this article] (2023). Sexual Problems as Late Effects: Awareness and Information Needs Among 1870 Long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (The NOR-CAYACS Study). Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. doi: 10.1089/jayao.2023.0031. Full text in Research Archive Show summary

  Purpose: Treatment-related sexual problems are common, but understudied, among survivors of Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS). We investigated awareness of, and information needs regarding, sexual problems as late effects in a nation-wide sample of long-term CAYACS. Methods: Five-year survivors were identified by the Cancer Registry of Norway, diagnosed between 1985 and 2009 with any childhood cancer (0–18 years of age, excluding central nervous system tumors), leukemia, colorectal cancer, breast cancer, non-Hodgkin lymphoma, or malignant melanoma (19–39 years of age). Malignant melanoma survivors treated with local surgery only served as an unmatched reference group. Survivors were mailed a survey, including items on awareness and information needs. Descriptive statistics and logistic regression analyses were used for data analyses. Results: Of 5361 CAYACS invited, 2104 responded (39%), of which 1870 were eligible for inclusion. In all, 62% were aware of sexual problems as late effects (46% aware only, 16% experienced it) and 31% reported information needs. Of all groups, childhood cancer survivors reported the lowest level of awareness (43% aware, 7% experienced it) and the highest information needs (38%). In multivariable models, awareness was associated with higher education, shorter time since treatment, more intense treatments, and experiencing hormonal changes and reduced fertility. Information needs were associated with having experienced sexual problems, female gender, higher treatment intensity, chronic fatigue, and increased depressive symptoms. Conclusions: A substantial proportion of long-term CAYACS report being unaware of, and have information needs regarding sexual problems as late effects decades beyond treatment. Addressing such issues during follow-up care is important.

• Menichetti, Julia; Gulbrandsen, Pål; Landmark, Anne Marie Dalby; Lie, Hanne Cathrine & Gerwing, Jennifer (2023). How Do Physicians Frame Medical Information in Talks With Their Patients? An Inductive Microanalysis. Qualitative Health Research. ISSN 1049-7323. 34(1-2), p. 101–113. doi: 10.1177/10497323231205152. Full text in Research Archive Show summary

  During medical consultations, physicians need to share a substantial amount of information with their patients. How this information is framed can be crucial for patient understanding and outcomes, but little is known about the details of how physicians frame information in practice. Using an inductive microanalysis approach in the study of videotaped medical interactions, we aimed to identify the information frames (i.e., higher-level ways of organizing and structuring information to reach a particular purpose) and the information-framing devices (i.e., any dialogic mechanism used to present information in a particular way that shapes how the patient might perceive and interpret it) physicians use spontaneously and intuitively while sharing information with their patients. We identified 66 different information-framing devices acting within nine information frames conveying: (1) Do we agree that we share this knowledge?, (2) I don’t like where I (or where you are) am going with this, (3) This may be tricky to understand, (4) You may need to think, (5) This is important, (6) This is not important, (7) This comes from me as a doctor, (8) This comes from me as a person, and (9) This is directed to you as a unique person. The kaleidoscope of information-framing devices described in this study reveals the near impossibility for neutrality and objectivity in the information-sharing practice of medical care. It also represents an inductively derived starting point for further research into aspects of physicians’ information-sharing praxis.

• Vandraas, Kathrine Flørenes; Reinertsen, Kristin Valborg; Smedsland, Solveig Katrine; Bøhn, Synne-Kristin Hoffart; Kiserud, Cecilie E. & Falk, Ragnhild Sørum [Show all 7 contributors for this article] (2023). Fear of cancer recurrence eight years after early-stage breast cancer–results from a national survey. Acta Oncologica. ISSN 0284-186X. 62(6), p. 635–641. doi: 10.1080/0284186X.2023.2224052. Full text in Research Archive
• Grydeland, May; Bratteteig, Mari; Rüegg, Corina Silvia; Lie, Hanne Cathrine; Thorsen, Lene & Larsen, Elna Hamilton [Show all 14 contributors for this article] (2023). Physical Activity Among Adolescent Cancer Survivors: The PACCS Study. Pediatrics. ISSN 0031-4005. 152(3). doi: 10.1542/peds.2023-061778. Full text in Research Archive Show summary

  OBJECTIVES: Physical activity (PA) may modify risks of late effects after cancer. We aimed to examine levels of PA and sedentary time (ST) in a large, international sample of adolescent childhood cancer survivors in relation to sociodemographic and cancer-related factors and compare levels of PA and ST to reference cohorts. METHODS: Survivors from any cancer diagnosis who had completed cancer treatment ≥1 year ago, aged 9 to 16 years, were eligible for the multicenter Physical Activity in Childhood Cancer Survivors study. PA and ST were measured by ActiGraph GT3X+ accelerometers. We performed linear regression analyses to assess factors associated with moderate-to-vigorous PA (MVPA) and ST, and compared marginal means of total PA, MVPA, and ST in 432 survivors to sex- and age-stratified references (2-year intervals) using immediate t-tests for aggregated data. RESULTS: Among survivors, 34% fulfilled the World Health Organization’s PA recommendation of ≥60 min of daily MVPA on average and their ST was 8.7 hours per day. Being female, older, overweight, a survivor of central nervous system tumor, or having experienced relapse were associated with lower MVPA and/or higher ST. Generally, male survivors spent less time in MVPA compared with references, whereas female survivors had similar levels. Both male and female survivors had higher ST than references in nearly all age groups. CONCLUSIONS: The low PA and high ST in this large sample of adolescent childhood cancer survivors is worrisome. Combined, our results call for targeted interventions addressing both PA and ST in follow-up care after childhood cancer.

• Keij, Sascha M.; Lie, Hanne Cathrine; Laidsaar-Powell, Rebekah; Kunneman, Marleen; Boer, Joyce E. de & Moaddine, Saïda [Show all 8 contributors for this article] (2023). Patient-related characteristics considered to affect patient involvement in shared decision making about treatment: A scoping review of the qualitative literature. Patient Education and Counseling. ISSN 0738-3991. 111. doi: 10.1016/j.pec.2023.107677. Full text in Research Archive Show summary

  Objective To identify patient-related characteristics considered to affect patient involvement in shared decision making (SDM) about treatment. Methods We conducted a scoping review of qualitative studies. We searched for literature across seven databases until March 2022, and included qualitative studies that focused on associations between patient-related characteristics and SDM about treatment in adults. We analyzed studies using an inductive thematic approach. Results The search yielded 5948 articles, of which 70 were included. We identified many different patient-related characteristics, which we grouped into four categories related to: (1) the individual who is facing the decision, (2) the decision, (3) the relationship between the patient and the clinician and others involved in the decision, and (4) the healthcare context. Conclusions Studies report a variety of patient-related characteristics that may affect patient involvement in SDM. Amongst others, patients may need to feel informed, to understand their role in SDM, and be able to communicate. Involvement may be challenging with characteristics such as perceived time pressure, poor patient-clinician relationships, emotional distress, and severe illness. Practice implications In order to truly involve patients in SDM, we might need to focus on characteristics such as patient emotions and relationship building, besides information provision and values clarification.

• Ålykkja, Anette; Larsen, Elna Hamilton; Larsen, Marie Hamilton; Ruud, Ellen; Puhr, Anita & Lie, Hanne Cathrine (2023). Life after paediatric brain tumour; the perspectives of the survivors and their parents. Journal of Advanced Nursing. ISSN 0309-2402. 80(2), p. 550–565. doi: 10.1111/jan.15812. Full text in Research Archive Show summary

  Aims: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. Design: A qualitative interview study using reflexive thematic analysis. Methods: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9–52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. Results: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors’ future, including the risk of late effects, relapse or other complications. Conclusion: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. Implications for the Profession and/or Patient Care: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. Reporting Method: We used the COREQ guidelines when reporting the study. Patient or Public Contribution: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.

• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Underhaug, Katrine Aass; Ruud, Ellen & Lie, Hanne Cathrine (2023). “The post-it note just said leukemia” - Information exchange challenges of teachers and local stakeholders supporting young childhood cancer survivors at school – A qualitative study from the Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) group. European Journal of Oncology Nursing. ISSN 1462-3889. 68. doi: 10.1016/j.ejon.2023.102464. Full text in Research Archive Show summary

  Purpose: Explore teachers’, school nurses’, cancer coordinators` and other local stakeholders’ experiences providing education and support for young childhood cancer survivors in the years after treatment. Methods: We conducted four focus groups and three individual telephone interviews with 15 teachers, nine nurses and three other stakeholders, using inductive thematic analysis inspired by Braun & Clark. Nvivo v12 was used for data-management. Results: Three main themes were developed; “Perceived parent attitudes and facilitation”, “The missing link –lack of communication and collaboration”, and “Enabling mastery, inclusion and thriving”. Parents were perceived to be the sole managers of providing cancer information and school-related follow-up needs. Teachers and other stakeholders experienced the nonexistence of information from specialist healthcare services and poor communication within the municipality. Teachers went to great lengths to meet survivors’ pedagogical needs and facilitate peer interactions. Teachers voiced a need for more cancer and late effect knowledge, not being dependent solely on parents` for information. Conclusions: Teachers and other stakeholders have essential roles in the continuing school experience for survivors. A more regulated teamwork between the stakeholders in the municipalities and the specialist healthcare system could ensure tailored late effect information at school. Implementing formal support could enable a co-creation of a personalized follow up that could relieve the burden on survivors, parents and teachers.

• Lie, Hanne Cathrine; Gerwing, Jennifer; Bondevik, Hilde; Bostad, Inga; Ellingsen, Dan-Mikael & Frühholz, Sascha [Show all 12 contributors for this article] (2022). Studying clinical communication through multiple lenses: The underused potential of inter-disciplinary collaborations. Patient Education and Counseling. ISSN 0738-3991. doi: 10.1016/j.pec.2022.04.010. Full text in Research Archive Show summary

  In the era of evidence-based medicine, surprisingly little attention is given to the practice of evidence-based communication skills and strategies to provide the best and most efficient patient care, perhaps due to the infinitely complex nature of clinical communication. Multiple models for ‘best practice’ exist, but they tend to focus on what skills and strategies to use, paying less attention to how they should be used in which contexts and situations for best effects [1]. Disentangling the complexities of effective clinical communication would therefore require insights from other disciplines outside medicine, including their theoretical models, empirical knowledge, and research methods, concerning the study of human communication and interaction, as well as medical, ethical, legal, philosophical, existential, cultural, and organizational perspectives. Although several disciplines study clinical communication, this is often done in isolation, without integrating efforts beyond a few selected disciplines, e.g., medicine, linguistics, or social psychology [[1], [2], [3], [4]]. Given the multiple levels of complexity in clinical communication research, we need to move beyond this fragmented approach to answer questions about what works, for what reasons, and in which contexts. These Association Pages aim to provide insights to move forward towards interdisciplinary research of clinical communication. As a primer to help build bridges across disciplines, we have asked experts from medicine, cognitive neuroscience, psychology, philosophy, linguistics, medical ethics, and educational sciences these two questions: “What fascinates you about clinical communication?” and “Which methodological tools do you tend to use to study it?“. We have summarized the responses below and provided a suggestion for how these different experts may work together in an interdisciplinary effort to generate new and needed knowledge of what is effective clinical communication, how it works and why, which can be translated into clinical practice and training.

• Larsen, Elna Hamilton; Mellblom, Anneli; Ruud, Ellen; Wahl, Astrid Klopstad & Lie, Hanne Cathrine (2022). Prepared for survivorship? Multidisciplinary healthcare professionals' experiences with adolescents’ transition off cancer treatment: A focus group study. European Journal of Oncology Nursing. ISSN 1462-3889. 58, p. 1–10. doi: 10.1016/j.ejon.2022.102150. Full text in Research Archive Show summary

  Purpose Research indicates that re-entering everyday life after completed cancer treatment can be challenging for adolescents, and knowledge about how healthcare professionals prepare them is scarce. This study explored (a) healthcare professionals’ experiences with adolescents with cancer transitioning off active cancer treatment; and (b) what healthcare professionals’ do to prepare adolescents and their families for this transition; and c) their ideas to improve current practice. Methods We conducted 8 focus-group interviews with 56 multidisciplinary healthcare professionals working in paediatric oncology settings across Norway. The sample consisted of nurses, physicians, social workers, psychologists, physiotherapists, a nutritionist, a dentist, a teacher and a music therapist. Inductive thematic analyses was used. Results We identified three main themes: (a) the multifaceted nature of the end of the treatment phase; (b) navigating challenges in providing early survivorship care; and (c) healthcare professionals' views and wishes regarding their role in transition care. The healthcare professionals conveyed uncertainty regarding how and when to talk about survivorship during treatment. Post-treatment, healthcare professionals' challenges included time restrictions, meeting the families’ individual information needs and providing tailored psychosocial care. Suggestions for improvements included checklists, defined roles and dedicated transition consultations. Conclusions Healthcare professionals were aware of the challenges families face during transition, and felt many were not addressed adequately. Although they had similar concrete suggestions for improvements, system barriers and lack of time and focus on survivorship were seen to hamper implementation. Implementing a standardized transition programme with increased nurse involvement could potentially improve the transition phase for everyone involved.

• Bøhn, Synne-Kristin Hoffart; Vandraas, Kathrine Flørenes; Kiserud, Cecilie E.; Dahl, Alv A; Thorsen, Lene & Ewertz, M. [Show all 9 contributors for this article] (2022). Work status changes and associated factors in a nationwide sample of Norwegian long-term breast cancer survivors. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-022-01202-2. Full text in Research Archive Show summary

  Purpose The study aims to describe work status at diagnosis and 8 years post-diagnosis in a nationwide sample of breast cancer survivors (BCSs), and investigate associated and self-reported factors of reduced work status. Methods Women aged 20–65 years when diagnosed with stage I–III breast cancer (BC) in 2011 or 2012 were invited to participate in a questionnaire study in 2019 (n = 2803), of whom 49% (n = 1361) responded. For this sub-study, we included 974 BCSs below the legal retirement age in Norway (< 67 years) at survey and with complete work status data. Reduced work status was defined as being in paid work at BC diagnosis and not working at time of survey. Logistic regression analyses were applied to identify factors associated with reduced work status. Results Of BCSs who were in paid work at diagnosis (n = 845), 63% maintained their work status to 8 years later. Reduced work status was associated with not living with children (OR .44, 95% CI .24–.82), age (OR 1.16, 95% CI 1.11–1.21), chemotherapy (OR 2.83, 95% CI 1.24–6.61), > 2 comorbid conditions (OR 2.27, 95% CI 1.16–4.32), cognitive function (OR .99, 95% CI .98–.99), fatigue (OR 1.02, 95% CI 1.01–1.03), and neuroticism (OR 1.57, 95% CI 1.00–2.46). BC and late effects were reported as reasons for reduced work status and disability. Conclusions The majority of BCSs who were in paid work at diagnosis were working 8 years later. Implications for Cancer Survivors Our results suggest a need to focus on fatigue and reduced cognitive function among long-term BCSs, with the ultimate aim of improving work sustainability.

• Mellblom, Anneli; Ruud, Ellen; Loge, Jon Håvard; Lie, Hanne Cathrine & Finset, Arnstein (2022). From Observation to Action: Developing and Pilot-Testing a Communication Tool for Follow-up Consultations with Adolescent Cancer Survivors. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 11(4), p. 419–426. doi: 10.1089/jayao.2021.0123. Full text in Research Archive Show summary

  Purpose: Efficient physician communication with adolescent cancer survivors (ACS) during follow-up consultations is important to enable survivors to take responsibility for their health. The present study had two aims: to develop a communication tool to enhance structured consultations and improve clinician communication in follow-up consultations, and to pilot-test the tool in physicians' consultations with ACS. Methods: Clinicians and communication experts collaborated closely to develop the 7 Memory Hooks (7MH) communication tool and a corresponding coding scheme for scoring communication behavior in consultations. Thirty-seven follow-up consultations between ACS and physicians were video-recorded (22 before intervention and 15 after intervention). The intervention consisted of a didactic lecture, a group workshop, and individual coaching to provide feedback to physicians on the communication skills observed in the pre-intervention videos. We then compared physicians' communication behavior both before and after intervention. Results: Fourteen physicians participated in the 7MH training. The mean total score on the 7MH scheme was significantly higher post-intervention compared with pre-intervention (p = 0.001). Six behaviors changed significantly after the intervention. At a group level, physicians were more likely to be alone with the adolescent (p = 0.004) and to prepare the patient for transition to adult heath care (p = 0.040). They asked more often about the patients' expectations (p = 0.007) and resources ((p = 0.019). And they acknowledged patients' concerns more often (p = 0.016) but talked significantly less about physical activity (p = 0.012). Conclusion: A physician communication tool, designed bottom-up and developed in collaboration with the clinic, shows promising effects on physicians' communication behavior at follow-up consultations with ACS

• Vandraas, Kathrine Flørenes; Falk, Ragnhild Sørum; Bøhn, Synne-Kristin Hoffart; Kiserud, Cecilie E.; Lie, Hanne Cathrine & Smedsland, Solveig Katrine [Show all 10 contributors for this article] (2022). Work ability 8 years after breast cancer: exploring the role of social support in a nation-wide survey. Breast Cancer Research and Treatment. ISSN 0167-6806. 193, p. 685–694. doi: 10.1007/s10549-022-06599-z. Full text in Research Archive Show summary

  Introduction As the 5-year survival rate after breast cancer in Norway is 92%, the population of breast cancer survivors (BCSs) is increasing. Knowledge of work ability in this population is scarce. In a population-based cohort of BCSs, we explored work ability 8 years after diagnosis and the association between work ability and social support, and cancer-related variables including late effects and lifestyle factors. Methods In 2019, all Norwegian women < 59 years when diagnosed with stage I–III breast cancer in 2011 or 2012, were identified by the Cancer Registry of Norway and invited to participate in a survey on work life experiences. Work ability was assessed using the Work Ability Index (scale 0–10). Factors associated with excellent work ability (score ≥ 9) were identified using univariate and multivariate logistic regression analyses, and adjusted for socioeconomic-, health- and cancer-related variables. Results Of the 1951 eligible BCSs, 1007 (52.8%) responded. After excluding survivors with relapse (n = 1), missing information on work ability score (n = 49), or work status (n = 31), the final sample comprised 926 BCSs within working age at survey (< 67 years). Mean age at survey was 56 years and 8 years (SD 0.7) had passed since diagnosis. Work ability had been reduced from 8.9 (SD 2.3) at diagnosis to 6.3 (SD 3.1). One in three BCSs reported poor work ability (WAS ≤ 5), and seven out of ten reported that their physical work ability had been reduced due to cancer. Social support from colleagues during cancer therapy was associated with excellent work ability, which was not observed for social support provided by supervisors or the general practitioner. Cognitive impairment and fatigue were inversely associated with work ability. None of the cancer-related variables, including treatment, were associated with work ability 8 years after diagnosis. Conclusion In this population-based sample, one in three BCSs reported poor work ability 8 years after diagnosis. Collegial social support during cancer therapy appears to be a protective factor for sustained work ability, whilst survivors struggling with fatigue and cognitive impairments may represent a particularly vulnerable group for reduced work ability.

• Dahl, Alv A; Kiserud, Cecilie E.; Fosså, Sophie Dorothea; Loge, Jon Håvard; Reinertsen, Kristin Valborg & Ruud, Ellen [Show all 7 contributors for this article] (2022). A study of high neuroticism in long-term survivors of childhood, adolescence, and young adult cancers. Scientific Reports. 12(1). doi: 10.1038/s41598-022-15697-3. Full text in Research Archive Show summary

  Neuroticism is a basic personality trait concerning negative feelings under stressful conditions. Our purpose was to examine the rate of high neuroticism and factors associated with high neuroticism in long-term (≥ 5 years) survivors of childhood, adolescent, and young adult cancer (CAYACSs). Norwegian CAYACSs aged 0–39 years when diagnosed and treated between 1985 and 2009 for cancer in childhood/adolescence (0–18 years), or as young adults (19–39 years) and alive in 2015 were mailed a questionnaire. Data from 1629 CAYACSs (481 children/adolescents and 1148 young adults) were analyzed. High neuroticism was found in 44% of survivors of childhood/adolescent cancers versus 34% in survivors of young adult cancer (p < 0.001). The rate of high neuroticism in female CAYACSs was 40% and in males 30% (p < 0.001). The corresponding difference between male survivor group was non-significant. In multivariable analysis, young age at survey, more adverse effects, poor self-rated health, female sex, chronic fatigue, and increased depression remained significantly associated with high neuroticism. Cancer treatment, comorbidity, and lifestyle were significant in bivariate analyses. Cancer at earlier age could increase the risk of high neuroticism among adult survivors. Screening for neuroticism could identify CAYACSs at risk for experiencing multiple health concerns and needing special follow-up attention.

• Egeland, Steinunn E; Lie, Hanne Cathrine; Woldseth, Ellen Martha; Korsvold, Live; Ruud, Ellen & Larsen, Marie Hamilton [Show all 7 contributors for this article] (2022). Exploring reported distress before and pain during needle insertion into a venous access port in children with cancer. Scandinavian Journal of Caring Sciences. ISSN 0283-9318. 00, p. 1–11. doi: 10.1111/scs.13067. Full text in Research Archive Show summary

  Background Venous access port is commonly used during cancer treatment in children, yet little is known about how children experience such needle insertion procedures. Aim To study distress before and pain after venous access port needle insertion among children and adolescents with cancer. A second aim was to explore associations between their self-report of procedure-related distress and pain with proxy reports by parents and nurses. Method The sample included 43 children/adolescents, aged 1–16 years with cancer, treated at two Norwegian university hospitals. The patient, parent(s), and the nurse performing the procedure completed developmentally appropriate 11-point distress and pain scales before and immediately after the venous access port procedure. Data were analysed using descriptive statistics and non-parametric correlations. Ethical issues The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Regional Committee for Medicine and Health Research and the data protector officer at the hospitals. Results For the youngest children (1–5 years), the median distress proxy score was 8 (range 0–9) and pain proxy score 4 (range 0–10). Median distress and pain scores for children aged 6–12 years were 3 (range 0–9) and 1 (range 0–10), respectively, and for the adolescents (age 13–16) 0 (range 0–6) and 1 (range 0–5), respectively. Patients’ self-reported distress and pain correlated highly with parents’ (distress: rho = 0.83, p < 0.001, pain: rho = 0.92, p < 0.001) and with nurses’ proxy ratings (distress: rho = 0.89, p < 0.001, pain: rho = 0.88, p < 0.001). Conclusion There were individual age differences in experienced distress/pain associated with venous access port needle insertion, with a trend for younger children to experience higher levels of distress/ pain than the older children. Children's self-report of distress/ pain concurred with both parental and nurse proxy reports.

• Vandraas, Kathrine Flørenes; Reinertsen, Kristin Valborg; Kiserud, Cecilie E.; Bøhn, Synne-Kristin Hoffart & Lie, Hanne Cathrine (2022). Health literacy among long-term survivors of breast cancer; exploring associated factors in a nationwide sample. Supportive Care in Cancer. ISSN 0941-4355. 30(9), p. 7587–7596. doi: 10.1007/s00520-022-07183-3. Full text in Research Archive Show summary

  Background Poor health literacy may hamper health management and long-term outcomes in breast cancer survivorship. Knowledge of factors associated with poor health literacy is needed to identify survivors in need of additional support and to improve the quality of health care, but is currently scant. Here, we explore health literacy and associated factors in a nationwide sample of long-term survivors of breast cancer. Material and methods All survivors aged 20–65 years when diagnosed with stage I–III breast cancer in 2011 or 2012 were identified through the Norwegian Cancer Registry, and invited to participate in the Survivorship, Work and Sexual Health (SWEET) study. Health literacy was measured using The European Health Literacy Survey Questionnaire-12 (HLS-EU-Q12) and analyzed as a continuous and categorical variable. Associations between health literacy and socioeconomic, physical, and mental health variables, including the most common late effects after cancer treatment, were explored in uni- and multivariable linear regression models. Results The final sample consisted of 1355 survivors (48%) with a mean age of 60 years at survey (SD 8.7). Eight years had passed since diagnosis (SD.0.7), and the majority of survivors had high socioeconomic status. Advanced judgment calls concerning treatment and health risks were reported to be the most difficult for survivors to handle. Mean health literacy sum score was 36.2 (range 12–48, SD 5.4). Thirty-nine percent had intermediate, while 19.3% reported marginal or inadequate health literacy. Education, income, age at diagnosis, the personality trait neuroticism, and fear of cancer recurrence were significantly associated with health literacy in the multivariate model, explaining 12% of the variance in health literacy scores.

• Gianinazzi, Micol Eva; Kiserud, Cecilie E.; Ruud, Ellen & Lie, Hanne Cathrine (2022). Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors. Cancers. 14(6), p. 1–14. doi: 10.3390/cancers14061534. Full text in Research Archive Show summary

  Simple Summary With the growing population of cancer survivors, survivorship management has become central for both medical professionals and patients. This entails, among other factors, empowering survivors with the necessary knowledge about their medical history and their risk for late effects, because informed patients make better lifestyle and health choices. Although a lack of information and low satisfaction with information received are fairly well-documented phenomena among childhood cancer survivors, less is known about survivors of young adult cancer and populations of long-term survivors no longer engaged in follow-up care. This paper aims to fill this gap by investigating information provision in childhood, adolescent and young adult cancer survivors. Abstract Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. Material and methods: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. Results: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. Conclusions: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions. Keywords: CCS; YACS; information provision; late effects; follow-up care; cancer survivorship

• Larsen, Marie Hamilton; Hansson, Kjersti Enger; Larsen, Elna Hamilton; Fridh, Martin Kaj; Petersen, Natasha Nybro & Mellblom, Anneli [Show all 9 contributors for this article] (2022). The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study. European Journal of Cancer Care. ISSN 0961-5423. 31(6), p. 1–11. doi: 10.1111/ecc.13696. Full text in Research Archive Show summary

  Objective: In this sub-study from the ‘PACCS’ study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences. Methods: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. Results: Two main themes were identified: ‘The post-treatment gap between expectations and reality’ comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, ‘Managing the gap’, comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. Conclusion: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

• Larsen, Elna Hamilton; Mellblom, Anneli; Larsen, Marie Hamilton; Ruud, Ellen; Thorsen, Lene & Petersen, Natasha Nybro [Show all 9 contributors for this article] (2022). Perceived barriers and facilitators to physical activity in childhood cancer survivors and their parents: A large-scale interview study from the International PACCS Study. Pediatric Blood & Cancer. ISSN 1545-5009. 70(1), p. 1–11. doi: 10.1002/pbc.30056. Full text in Research Archive Show summary

  Background Physical activity (PA) may reduce risks of late effects in childhood cancer survivors, yet many have low activity levels. Using the WHO's International Classification of Functioning, Disability, and Health for Children and Youths (ICF-CY) as a conceptual framework, we aimed to identify perceived barriers and facilitators to PA in young survivors and their parents. Design/methods We conducted individual, semi-structured interviews with 63 survivors, aged 9–18 years, ≥1-year off treatment, and 68 parents, recruited from three pediatric oncology departments in Norway and Denmark. Interviews were analyzed inductively using thematic analysis to identify barriers and facilitators to PA, which were mapped onto the ICF-CY model components; body function/structures, activities, participation, and environmental and personal factors. Results Two-thirds of the survivors described how treatment-related impairments of bodily functions (e.g., fatigue, physical weakness, reduced lung capacity) caused physical limitations, reducing opportunities to participate in PA, especially team sports and school physical education. This resulted in a perceived ability gap between survivors and peers, reducing motivation for PA. These PA barriers were moderated by environmental factors that facilitated or further hindered PA participation (family, peer, and school support). Similarily, personal factors also facilitated (acceptance, motivation, goal setting) or hindered (anxiety, low motivation, and lack of trust) PA participation. Conclusion Treatment-related long-term or late effects represented significant barriers to PA as their functional consequences reduced survivors’ capacities and capabilities to be active. Environmental and personal factors acting as facilitators or further barriers to PA were identified. Applying the ICF-CY framework in clinical practice could help to enable PA participation.

• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ruud, Ellen; Mellblom, Anneli; Helland, Sunniva & Lie, Hanne Cathrine (2021). “I have to do things differently now, but I make it work”—young childhood cancer survivors’ experiences of self-management in everyday living. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-021-01066-y. Full text in Research Archive Show summary

  Abstract Purpose Living with late effects can affect young childhood cancer survivors’ (CCSs) self-management (SM) abilities. In this study, we explored different approaches to SM of everyday life by young CCS. Methods This is a sub-study of a larger study on Physical Activity among Childhood Cancer Survivors (the PACCS study). We conducted individual interviews with 22 CCS aged 9 to 18 years who were at least 1 year off-treatment. An hybrid inductive-decductive thematic analysis was used. Results Three main themes were identified: (1) managing everyday life with fatigue, (2) building self-management competence, and (3) cancer survivor as part of identity. Late effects, especially fatigue, contributed to a perceived ability gap compared to peers, limiting participation in everyday activities. CCS developed new SM skills to overcome such challenges and pushed themselves physically and mentally to master and balance activities and rest to regain energy. CCS changed activities, adapted their expectations, or legitimized their apparent lack of SM skills to regain a sense of self-efficacy. Managing the impact of cancer on relationships with family and friends also required use of SM strategies. Conclusions The findings expand our currently limited knowledge of young CCS and SM skills they develop to manage everyday life after treatment completion. These, combined with ongoing support from family and peers, “make it work”. Implications for Cancer Survivors The perspectives of young CCS illustrate their SM skills and support needs beyond transitioning off-treatment. Conceptualizing this within follow-up care may contribute to a feeling of mastery and increased satisfaction among CCS.

• Dahl, Alv A; Kiserud, Cecilie E.; Fosså, Sophie Dorothea; Loge, Jon Håvard; Reinertsen, Kristin Valborg & Ruud, Ellen [Show all 7 contributors for this article] (2021). A controlled study of major depressive episodes in long‐term childhood, adolescence, and young adult cancer survivors (The nor‐cayacs study). Cancers. 13:5800(22), p. 1–13. doi: 10.3390/cancers13225800. Full text in Research Archive Show summary

  Background: A major depressive episode (MDE) is typically self-rated by screening forms identifying probable MDE (pMDE). This population-based cross-sectional questionnaire study examined the prevalence rates of pMDE identified by the PHQ-9 screener in long-term survivors of childhood and adolescence (CACSs) and young adult cancer (YACSs) and a normative sample (NORMs). Methods: Data from 488 CACSs, 1202 YACSs, and 1453 NORMs were analyzed, and pMDE was defined both by cut-off ≥10 on the total PHQ-9 score and by an algorithm. Results: The prevalence rates of pMDE among CACSs were 21.5%, 16.6% in YACSs, and 9.2% among NORMs using the cut-off definition. With the algorithm, the prevalence rates of pMDE were 8.0% among CACSs, 8.1% among YACSs, and 3.9% among NORMs. Independent of definition, CACSs and YACSs had significantly increased prevalence rates of pMDE compared to NORMs. Psychosocial factors and self-rated health were significantly associated with both definitions of pMDE in multivariable analyses, while survivor groups, cancer types, and adverse events were not. Conclusion: Since pMDE has negative health consequences and is amenable to treatment, healthcare providers should be attentive and screen for pMDE in young cancer survivors. For PHQ-9, the preferred type of definition of pMDE should be determined.

• Lie, Hanne Cathrine; Juvet, Lene Kristine; Jr, Richard L. Street,; Gulbrandsen, Pål; Mellblom, Anneli & Brembo, Espen Andreas [Show all 13 contributors for this article] (2021). Effects of Physicians' Information Giving on Patient Outcomes: a Systematic Review. Journal of General Internal Medicine (JGIM). ISSN 0884-8734. p. 1–13. doi: 10.1007/s11606-021-07044-5. Full text in Research Archive Show summary

  Background: Providing diagnostic and treatment information to patients is a core clinical skill, but evidence for the effectiveness of different information-giving strategies is inconsistent. This systematic review aimed to investigate the reported effects of empirically tested communication strategies for providing information on patient-related outcomes: information recall and (health-related) behaviors. Methods: The databases MEDLINE, Embase, PsycINFO (Ovid), Cochrane Central Register of Controlled Trials, and relevant bibliographies were systematically searched from the inception to April 24, 2020, without restrictions, for articles testing information-giving strategies for physicians (PROSPERO ID: CRD42019115791). Pairs of independent reviewers identified randomized controlled studies with a low risk of selection bias as from the Cochrane risk of bias 2 tool. Main outcomes were grouped into patient information recall and behavioral outcomes (e.g., alcohol consumption, weight loss, participation in screening). Due to high heterogeneity in the data on effects of interventions, these outcomes were descriptively reported, together with studies’, interventions’, and information-giving strategies’ characteristics. PRISMA guidelines were followed. Results: Seventeen of 9423 articles were included. Eight studies, reporting 10 interventions, assessed patient information recall: mostly conducted in experimental settings and testing a single information-giving strategy. Four of the ten interventions reported significant increase in recall. Nine studies assessed behavioral outcomes, mostly in real-life clinical settings and testing multiple information-giving strategies simultaneously. The heterogeneity in this group of studies was high. Eight of the nine interventions reported a significant positive effect on objectively and subjectively measured patients’ behavioral outcomes. Discussion: Using specific framing strategies for achieving specific communication goals when providing information to patients appears to have positive effects on information recall and patient health–related behaviors. The heterogeneity observed in this group of studies testifies the need for a more consistent methodological and conceptual agenda when testing medical information-giving strategies.

• Petersen, Natasha Nybro; Hansson, Helena; Lie, Hanne Cathrine; Brinkkjaer, Maria; Graungaard, Benjamin & Larsen, Marie Hamilton [Show all 10 contributors for this article] (2021). A qualitative study of young childhood cancer survivors and their parents' experiences with treatment-related late effects in everyday life post-treatment. Journal of Advanced Nursing. ISSN 0309-2402. doi: 10.1111/jan.15073. Full text in Research Archive
• Thorsen, Lene; Bøhn, Synne-Kristin H.; Lie, Hanne C.; Fosså, Sophie Dorothea & Kiserud, Cecilie E. (2021). Needs for information about lifestyle and rehabilitation in long-term young adult cancer survivors. Supportive Care in Cancer. ISSN 0941-4355. 30, p. 521–533. doi: 10.1007/s00520-021-06418-z. Full text in Research Archive Show summary

  Background Healthy lifestyle and rehabilitation may mitigate late effects after cancer treatment, but knowledge about lifestyle and rehabilitation information needs among long-term young adult cancer survivors (YACSs) (≥ 5 years from diagnosis) is limited. The present study aimed to examine such information needs among long-term YACSs, and identify characteristics of those with needs. Material and methods The Cancer Registry of Norway identified long-term YACSs diagnosed with breast cancer, colorectal cancer, non-Hodgkin lymphoma, leukemia, or malignant melanoma at the age of 19–39 years, between 1985 and 2009. Survivors were mailed a questionnaire, in which respondents reported their information needs on physical activity, diet, and rehabilitation services 5–30 years post-diagnosis. Descriptive statistics and logistic regression analyses were used to examine the prevalence of information needs and associated factors. Results Of 1488 respondents (a response rate of 42%), 947 were included. Median age at diagnosis was 35 years (range 19–39) and median observation time since diagnosis was 14 years (range 5–30). In total, 41% reported information needs for information about physical activity, 45% about diet, and 47% about rehabilitation services. Information needs were associated with higher treatment intensity, increasing number of late effects, and an unhealthy lifestyle. Conclusion A large proportion of long-term YACSs report information needs regarding lifestyle and/or rehabilitation more than a decade beyond treatment. Assessments of such information needs should become a part of long-term care of these cancer survivors.

• Hypher, Ruth Elizabeth; Andersson, Stein; Finnanger, Torun Gangaune; Brandt, Anne Elisabeth; Hoorelbeke, Kristof & Lie, Hanne Cathrine [Show all 11 contributors for this article] (2021). Fatigue Following Pediatric Acquired Brain Injury: Interplay With Associated Factors in a Clinical Trial Population Compared to Healthy Controls. Neuropsychology. ISSN 0894-4105. 35(6), p. 609–621. doi: 10.1037/neu0000753. Full text in Research Archive Show summary

  Objective: The aims of the present study were to compare fatigue levels in children with pediatric acquired brain injury (pABI) with healthy controls (HCs), and examine the interplay of fatigue with associated factors. Method: We used baseline data from a preregistered randomized controlled trial. Seventy-six children aged 10–17 (median 13 years) with pABI in the chronic phase (88% with confirmatory cerebral imaging findings) and executive function (EF) complaints were included, most with moderate disability according to The Glasgow Outcome Scale Extended (GOSE-E) categorization. HCs consisted of 60 children aged 10–17 (median 13 years). All 127 participants completed measures of fatigue and intelligence. pABI participants were also assessed for behavioral problems, health-related quality of life (HRQoL), and EF. Nonparametric statistics were employed, in addition to a network analysis to model the unique associations between parent-reported fatigue and related factors. Results: Parents reported significantly more fatigue in the pABI-group (75% of scores in clinical range; < 70) compared to HCs (11.7% of scores in clinical range). No strong associations were found between fatigue and injury characteristics, but findings indicated more fatigue in the older than younger age-group for pABI participants. Network modeling revealed a central role for HRQoL, behavioral, and EF symptoms in relation to fatigue. Conclusions: Fatigue is reported to be highly prevalent in the chronic phase of pABI. When addressing fatigue, our findings demonstrate the advantage of including multidimensional measures of fatigue and examining associated psychological and cognitive constructs, such as HRQoL, behavioral problems, and EF. Impact Statement Question: What is the prevalence and severity of fatigue in children and adolescents with pediatric brain injuries, and is it related to other factors? Findings: For the majority of children in chronic phase of pABI, parents reported fatigue in the clinical range. Fatigue is associated with health-related quality of life, behavioral problems, and executive function. Importance: Fatigue is a complex symptom that negatively impacts functioning across a range of areas, and needs to be addressed in all phases of brain injury rehabilitation. Next Steps: Longitudinal studies are needed to confirm the directionality of the relationships between factors associated with fatigue.

• Menichetti, Julia; Lie, Hanne Cathrine; Mellblom, Anneli; Brembo, Espen Andreas; Eide, Hilde & Gulbrandsen, Pål [Show all 12 contributors for this article] (2021). Tested communication strategies for providing information to patients in medical consultations: A scoping review and quality assessment of the literature. Patient Education and Counseling. ISSN 0738-3991. 104(8), p. 1891–1903. doi: 10.1016/j.pec.2021.01.019. Full text in Research Archive Show summary

  Objectives: To systematize the scientific knowledge of empirically tested strategies for verbally providing medical information in patient-physician consultations. Methods: A scoping review searching for terms related to physician, information, oral communication, and controlled study. Four pairs of reviewers screened articles. For each selected study, we assessed the quality and summarized aspects on participants, study, intervention, and outcomes. Information provision strategies were inductively classified by types and main categories. Results: After screening 9422 articles, 39 were included. The methodological quality was moderate. We identified four differently used categories of strategies for providing information: cognitive aid (n = 13), persuasive (n = 8), relationship- (n = 3), and objectivity-oriented strategies (n = 4); plus, one “mixed” category (n = 11). Strategies were rarely theoretically derived. Conclusions: Current research of tested strategies for verbally providing medical information is marked by great heterogeneity in methods and outcomes, and lack of theory-driven approaches. The list of strategies could be used to analyse real life communication. Practice implications: Findings may aid the harmonization of future efforts to develop empirically-based information provision strategies to be used in clinical and teaching settings.

• Murray, Craig Edward Sørheim; Possel, Nina Von; Lie, Hanne C. & Breivik, Jarle (2021). The Nine Cancer Frames: A Tool to Facilitate Critical Reading of Cancer-Related Information. Journal of Cancer Education. ISSN 0885-8195. p. 1–10. doi: 10.1007/s13187-021-02062-7. Full text in Research Archive Show summary

  Abstract People’s ability to critically assess cancer-related information is essential from a preventional and therapeutic, as well as a general democratic perspective. Such cancer literacy is not just about acquiring factual knowledge. It also involves the ability to analyze how the information is contextualized—how cancer is framed. Previous research concerning the framing of cancer in public discourse is voluminous and penetrating but also fragmented and inaccessible to non-experts. In this study, we have developed an integrated and applicable tool for analyzing cancer discourse by systematically classifying distinctive ways of framing of the concept of cancer. Building on previous research and an inductive framing analysis of a broad range of public cancer discourse, systematically selected from British and Norwegian newspapers, we have characterized nine cancer frames: the biomedical, the environmental, the epidemiological, the personal, the sociopolitical, the economic, the antagonistic, the alternative, and the symbolic frame. This framing scheme may be applied to analyze cancer-related discourse across a plurality of themes and contexts. We also show how different frames combine to produce more complex messages, thereby revealing underlying patterns, strategies, and conflicts in cancer communication. In conclusion, this analytical tool enables critical reading of cancer-related information and may be especially useful in educational initiatives to advance health communication and public understanding of cancer.

• Bøhn, Synne-Kristin Hoffart; Lie, Hanne Cathrine; Reinertsen, Kristin Valborg; Fosså, Sophie Dorothea; Haugnes, Hege Sagstuen & Kiserud, Cecilie E. [Show all 9 contributors for this article] (2020). Lifestyle among long-term survivors of cancers in young adulthood. Supportive Care in Cancer. ISSN 0941-4355. 29(1), p. 289–300. doi: 10.1007/s00520-020-05445-6. Full text in Research Archive Show summary

  Abstract Purpose To investigate lifestyle in a population-based sample of long-term (≥ 5 years since diagnosis) young adult cancer survivors (YACSs), and explore factors associated with not meeting the lifestyle guidelines for physical activity (PA), body mass index (BMI), and smoking. Methods YACSs (n = 3558) diagnosed with breast cancer (BC), colorectal cancer (CRC), non-Hodgkin lymphoma (NHL), acute lymphoblastic leukemia (ALL), or localized malignant melanoma (MM) between the ages of 19 and 39 years and treated between 1985 and 2009 were invited to complete a mailed questionnaire. Survivors of localized MM treated with limited skin surgery served as a reference group for treatment burden. Results In total, 1488 YACSs responded (42%), and 1056 YACSs were evaluable and included in the present study (74% females, average age at survey 49 years, average 15 years since diagnosis). Forty-four percent did not meet PA guidelines, 50% reported BMI ≥ 25 and 20% smoked, with no statistically significant differences across diagnostic groups. Male gender, education ≤ 13 years, comorbidity, lymphedema, pain, chronic fatigue, and depressive symptoms were associated with not meeting single and/or an increasing number of lifestyle guidelines. Conclusion A large proportion of long-term YACSs do not meet the lifestyle guidelines for PA, BMI, and/or smoking. Non-adherence to guidelines is associated with several late effects and/or comorbidities that should be considered when designing lifestyle interventions for YACSs.

• Mellblom, Anneli; Kiserud, Cecilie E.; Rueegg, Corina Silvia; Ruud, Ellen; Loge, Jon Håvard & Fosså, Sophie Dorothea [Show all 7 contributors for this article] (2020). Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study). Supportive Care in Cancer. ISSN 0941-4355. p. 1–11. doi: 10.1007/s00520-020-05790-6. Full text in Research Archive Show summary

  Abstract Purpose The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS. Methods Survivors were identified by the Cancer Registry of Norway. All &gt; 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0–18 years old, excluding CNS), breast cancer (BC, stages I–III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19–39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors. Results Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey ( p = 0.001), higher education ( p = 0.012), and increasing number of late effects ( p = &lt; 0.001) were associated with increased likelihood of follow-up care in the multivariate model. Conclusions The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.

• Ålykkja, Anette; Ruud, Ellen; Larsen, Marie Hamilton; Vatne, Torun & Lie, Hanne Cathrine (2020). Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow-up care after paediatric brain tumour. European Journal of Cancer Care. ISSN 0961-5423. doi: 10.1111/ecc.13375. Full text in Research Archive Show summary

  Objective Paediatric brain tumour (PBT) survivors face high risks of disabling long‐term and late effects. Whether survivors’ needs are met in a system with publicly funded services, but in the absence of a formal long‐term follow‐up model, is uncertain. Empirically based recommendations for a national model are needed. We explored multidisciplinary healthcare providers’ (HCP) experiences with providing such care. Methods We conducted five focus‐group interviews and five individual interviews with a nationally representative sample of 33 Norwegian HCPs. Focus‐group interviews and individual interviews were analysed using systematic text condensation. Results Three main themes were identified: (a) ‘Providing care above and beyond system constraints’, describing a perceived discrepancy between HCPs’ knowledge of, and their ability to meet, the survivors’ needs. (b) ‘System barriers to providing optimal follow‐up care’, describing a perceived lack of routines for communication and coordination between the HCPs and existing care services. (c) ‘Nurses and shared‐care to improve care’, including empowering nurses and establishing routines for collaborations and areas of responsibilities. Conclusion The current healthcare system was perceived not to fully meet the survivors’ needs. Nurse‐led care models, including standardised patient‐care pathways, were suggested to increase the accessibility of already‐existing services and thus to improve long‐term follow‐up care.

• Christen, Salome; Roser, Katharina; Mulder, Renee L.; Ilic, Anica; Lie, Hanne Cathrine & Loonen, Jacqueline J. [Show all 14 contributors for this article] (2020). Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Journal of cancer survivorship. ISSN 1932-2259. 14(6), p. 923–938. doi: 10.1007/s11764-020-00904-9. Full text in Research Archive Show summary

  Abstract Purpose Cancer-related fatigue (CRF) negatively affects the lives of childhood, adolescent, and young adult (CAYA) cancer survivors. We aimed to provide an evidence-based clinical practice guideline (CPG) with internationally harmonized CRF surveillance recommendations for CAYA cancer survivors diagnosed &lt; 30 years. Methods This CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of four existing CPGs, we performed systematic literature searches. We screened articles for eligibility, assessed quality, extracted, and summarized the data from included articles. We formulated recommendations based on the evidence and clinical judgment. Results Of 3647 articles identified, 70 articles from 14 countries were included. The prevalence of CRF in CAYA cancer survivors ranged from 10–85%. We recommend that healthcare providers are aware of the risk of CRF, implement regular screening with validated measures, and recommend effective interventions to fatigued survivors. Conclusions A considerable proportion of CAYA cancer survivors suffers from CRF even years after the end of treatment. Implications for Cancer Survivors We recommend that healthcare providers adopt regular screening to detect and treat CRF early and positively influence survivors’ health and quality of life.

• Vandraas, Kathrine Flørenes; Reinertsen, Kristin Valborg; Kiserud, Cecilie E. & Lie, Hanne Cathrine (2020). Fear of cancer recurrence among young adult cancer survivors—exploring long-term contributing factors in a large, population-based cohort. Journal of cancer survivorship. ISSN 1932-2259. p. 1–12. doi: 10.1007/s11764-020-00943-2. Full text in Research Archive Show summary

  Abstract Purpose Fear of cancer recurrence (FCR) may be debilitating, yet knowledge of FCR among the growing population of long-term young adult cancer survivors (YACS) is scarce. We explored risk of FCR and associated factors in a nation-wide, population-based cohort of YACS. Methods All 5-year survivors diagnosed at the ages of 19–39 years with breast cancer (BC), malignant melanoma (MM), colorectal cancer (CRC), leukemia (LEU), or non-Hodgkin lymphoma (NHL) between 1985 and 2009 in Norway were identified by the Cancer Registry of Norway and completed the cross-sectional comprehensive NOR-CAYACS health survey. Univariate and multivariate linear regression modeling was performed. Results In total, 936 survivors were included, with an average of 16 years since diagnoses. BC was the most prevalent cancer form (38.4%), followed by MM (24.7%), NHL (15.6%), CRC (11.8%), and LEU (9.6%). Survivors worried most about getting another cancer (74%), and (20%) reported quite a bit or a lot of FCR. BC and MM survivors had the highest FCR scores. Post-traumatic stress symptoms (PTSS) had the strongest association with FCR (Std B 0.21, p  &lt; 0.01), above demographic and clinical variables. Conclusions FCR is prevalent even among long-term YACS, including survivors of MM with favorable prognoses. Implications for Cancer Survivors Attention to ongoing risks of PTSS and FCR in this growing survivor population is warranted to optimize future survivorship care.

• Hausken, Solveig Elisabeth Sand; Lie, Hanne Cathrine; Lien, Nanna; Sleddens, Ester F.C.; Melbye, Elisabeth Lind & Bjelland, Mona (2019). The reliability of the general functioning scale in Norwegian 13–15-year-old adolescents and association with family dinner frequency. Nutrition Journal. 18:20, p. 1–5. doi: 10.1186/s12937-019-0447-1. Full text in Research Archive Show summary

  Background Family environment is crucial to the development of health behaviors into adolescence and adulthood. The aims of this study were (1) to explore the reliability of the General Functioning Scale (GFS) among Norwegian 13-15-year-olds, and (2) to assess whether family functioning reported by adolescents was associated with family dinner frequency. Methods In total 440 secondary-school students were invited to participate in this cross-sectional web-based questionnaire survey, with 54 participating in the test-retest study. Test-retest and internal consistency were assessed for the 12-item GFS-scale. Associations between family functioning and family dinner frequency were tested using multiple logistic regression. Results The GFS had high internal consistency (corrected item-total correlations ranging from 0.40 to 0.65, Cronbach’s α = 0.85), and excellent test–retest reliability (intra-class correlation coefficient = 0.83). In the logistic regression model, a higher score on GFS (poorer family functioning) was associated with a reduced likelihood of having dinner together on a daily basis (i.e., 6–7 times per week, OR = 0.36, CI = 0.20–0-64) after adjusting for age, gender, ethnicity, living situation and parental education level. Conclusions The GFS had high reliability. As poorer family functioning was associated with less frequent family dinners, the family environment may be an important (contextual) target to influence adolescent health behaviors. It would be of interest to further explore the role of family functioning in relation to adolescents’ dietary habits, besides shared family meals, and to reveal the mechanisms underlying such relationships.

• Bøhn, Synne-Kristin Hoffart; Thorsen, Lene; Kiserud, Cecilie E.; Fosså, Sophie Dorothea; Lie, Hanne Cathrine & Loge, Jon Håvard [Show all 9 contributors for this article] (2019). Chronic fatigue and associated factors among long-term survivors of cancers in young adulthood. Acta Oncologica. ISSN 0284-186X. 58(5), p. 753–762. doi: 10.1080/0284186X.2018.1557344. Full text in Research Archive Show summary

  Background: Chronic fatigue (CF) is scarcely explored among young adult cancer survivors (YACSs), and more knowledge is needed to develop targeted interventions for YACSs with CF. The present study aimed to investigate the prevalence of CF and associated factors in YACSs. Also, the change of fatigue with time was explored. Material and methods: The present cross-sectional study is part of a nation-wide population based survey of Norwegian survivors of cancer in childhood, adolescence, and young adulthood (The NOR-CAYACS study).YACSs diagnosed at the age of 19–39 years with breast cancer stage ≤ III (BC), colorectal cancer (CRC), non-Hodgkin lymphoma (NHL), acute lymphoblastic leukemia, or non-metastatic malignant melanoma (MM) were included 5–30 years after diagnosis. Survivors of MM treated with limited surgery were included as a reference group. CF was assessed by the Fatigue Questionnaire. Logistic regression analyses were performed to identify factors associated with CF. Results: In total, 1488 survivors completed the questionnaire (a response rate of 42%), of which 1088 were eligible for the present study. Overall, 25% reported CF. CF was significantly more prevalent among survivors of BC (29%) (p < .001), CRC (29%) (p = .001) and NHL (27%) (p = .003) than among survivors of MM (15%). CF was associated with systemic treatment combined with surgery and/or radiotherapy (p = .018), comorbidity (p = .038), pain (p = .002), numbness in hands/feet (p = .046), and depressive symptoms (p < .001) in the multivariable model. Among survivors with CF, 60% reported that they had been tired since cancer treatment, and among these, 65% reported worsening or no change of fatigue with time. Conclusion: One of four YACSs reported CF 15 years from diagnosis (mean). CF was associated with several possibly treatable factors. Health professionals involved in the follow-up of YACSs should have knowledge of CF and approaches to manage it.

• Dahl, Alv A; Fosså, Sophie Dorothea; Lie, Hanne Cathrine; Loge, Jon Håvard; Reinertsen, Kristin Valborg & Ruud, Ellen [Show all 7 contributors for this article] (2019). Employment Status and Work Ability in Long-Term Young Adult Cancer Survivors. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 8(3), p. 304–311. doi: 10.1089/jayao.2018.0109. Full text in Research Archive Show summary

  Purpose: In young adult cancer survivors (YACSs) to explore the rate of being nonemployed and having low work ability, and to identify factors associated with these two outcomes. Methods: All Norwegian YACSs (N = 3558) diagnosed at ages 19–39 years and treated between 1985 and 2009 for breast or colorectal cancer, leukemia, non-Hodgkin lymphoma, or melanoma, and alive in 2015, were mailed a questionnaire. The response rate was 42%. For treatment, a minimal surgery-only group (N = 198) was defined as reference group, and 1000 YACSs represented the local, systemic, and systemic plus other treatment groups. Work status was compared with normative data. Results: The sample included 63% females. Median age at survey was 49 years (range 27–65), and median time since first cancer diagnosis was 16 years (range 6–31). At survey, 25% (95% confidence interval [CI]: 22–27) of YACSs were nonemployed, and 38% (95% CI: 35–41) reported low work ability. The rate of being nonemployed was similar to normative data. More female YACSs held disability pension compared with normative data. In multivariable analyses, an increasing number of adverse effects (AEs), cardiovascular diseases, lower basic education, reduced level of self-rated health, and increased level of depression were significantly associated with both being nonemployed and having low work ability. Conclusions: In YACSs surveyed at median 49 years of age, 25% were nonemployed and 38% had low current work ability. An increased mean number of long-term AEs and several other health-related factors were significantly associated with both these outcomes. Health care providers responsible for YACSs should be attentive to such factors and work ability.

• Lie, Hanne Cathrine; Rueegg, Corina Silvia; Fosså, Sophie Dorothea; Loge, Jon Håvard; Ruud, Ellen & Kiserud, Cecilie E. (2019). Limited evidence of non-response bias despite modest response rate in a nationwide survey of long-term cancer survivors?results from the NOR-CAYACS study. Journal of cancer survivorship. ISSN 1932-2259. 13(3), p. 353–363. doi: 10.1007/s11764-019-00757-x. Full text in Research Archive Show summary

  Purpose Declining response rates threaten the generalizability of health surveys. We investigate (1) the effect of item order on response rate; (2) characteristics of early , late and non-responders; and (3) potential non-response bias in a population-based health survey of childhood, adolescent and young adult cancer survivors (CAYACS). Methods We mailed a questionnaire survey to 5361 eligible CAYACS identified by the Cancer Registry of Norway (CRN), representing a range of cancer diagnoses. The 302-item questionnaire included a range of survivorship-related questions and validated patient-reported outcome measures. To investigate item-order effects on response rates, we constructed two versions of the questionnaire presenting cancer-related or socio-demographic items first. The CRN provided demographic and clinical information for the total population. Risk of non-response bias was estimated by (1) comparing outcomes between early and late responders (answered after a reminder), and (2) by applying inverse probability of participation weights to construct a total population (with 100% response) and then compare 21 a priori selected outcomes between early responders, all responders (early + late) and the total population (all eligible). Results Survey item order did not affect response rates (cancer first 49.8% vs socio-demographic first 50.2%). Shorter time since diagnosis, male gender and a malignant melanoma diagnosis remained significant predictors of non-response in a multivariable multinomial regression model. There were no significant differences on 16/21 survey outcomes between early and late responders, and 18/21 survey outcomes between early responders, all responders and the total population. Conclusion Despite a modest response rate, we found little evidence for a response bias in our study. Implications for Cancer Survivors Surveys of survivor-reported outcomes with low response rates may still be valuable and generalizable to the total survivor population.

• Grotmol, Kjersti Støen; Lie, Hanne Cathrine; Loge, Jon Håvard; Aass, Nina Kathrine; Haugen, Dagny Faksvåg & Stone, Patrick C [Show all 8 contributors for this article] (2018). Patients with advanced cancer and depression report a significantly higher symptom burden than non-depressed patients. Palliative & Supportive Care. ISSN 1478-9515. p. 1–7. doi: 10.1017/S1478951517001183. Full text in Research Archive Show summary

  Objective Clinical observations indicate that patients with advanced cancer and depression report higher symptom burden than nondepressed patients. This is rarely examined empirically. Study aim was to investigate the association between self-reported depression disorder (DD) and symptoms in patients with advanced cancer controlled for prognostic factors. Method The sample included 935 patients, mean age 62, 52% males, from an international multicentre observational study (European Palliative Care Research Collaborative – Computerised Symptom Assessment and Classification of Pain, Depression and Physical Function). DD was assessed by the Patient Health Questionnaire-9 and scored with Diagnostic and Statistical Manual of Mental Disorder-5 algorithm for major depressive disorder, excluding somatic symptoms. Symptom burden was assessed by summing scores on somatic Edmonton Symptom Assessment Scale (ESAS) symptoms, excluding depression, anxiety, and well-being. Item-by-item scores and symptom burden of those with and without DD were compared using nonparametric Mann-Whitney U tests. The relative importance of sociodemographic, medical, and prognostic factors and DD in predicting symptom burden was assessed by hierarchical, multiple regression analyses. Result Patients with DD reported significantly higher scores on ESAS items and a twofold higher symptom burden compared with those without. Factors associated with higher symptom burden were as follows. Diagnosis: lung (β = 0.15, p < 0.001) or breast cancer (β = 0.08, p < 0.05); poorer prognosis: high C-reactive protein (β = 0.08, p < 0.05), lower Karnofsky Performance Status (β = −0.14, p < 0.001), and greater weight loss (β = −0.15, p < 0.001); taking opioids (β = 0.11, p < 0.01); and having DD (β = 0.23, p < 0.001). The full model explained 18% of the variance in symptom burden. DD explained 4.4% over and above that explained by all the other variables. Significance of results Depression in patients with advanced cancer is associated with higher symptom burden. These results encourage improved routines for identifying and treating those suffering from depression.

• Signorelli, Christina; Wakefield, Claire E.; Fardell, Joanna E.; Foreman, Tali; Johnston, Karen A. & Emery, Jon [Show all 10 contributors for this article] (2018). The role of primary care physicians in childhood cancer survivorship care: Multiperspective interviews. The Oncologist. ISSN 1083-7159. doi: 10.1634/theoncologist.2018-0103. Full text in Research Archive
• Grotmol, Kjersti Støen; Lie, Hanne Cathrine; Hjermstad, Marianne Jensen; Aass, Nina Kathrine; Currow, David & Kaasa, Stein [Show all 9 contributors for this article] (2017). Depression-A Major Contributor to Poor Quality of Life in Patients With Advanced Cancer. Journal of Pain and Symptom Management. ISSN 0885-3924. 54(6), p. 889–897. doi: 10.1016/j.jpainsymman.2017.04.010. Full text in Research Archive Show summary

  Context Quality of life (QoL) and depression are important patient-reported outcomes in cancer care. However, the relative importance of depression severity in predicting QoL remains unclear because of few methodologically sound studies. Objectives To examine whether depression contributes to impairment of QoL irrespective of prognostic factors and symptom burden. Methods A total of 563 patients were included from the European Palliative Care Research Collaborative–Computerized Symptom Assessment Study, an international, multi-center, cross-sectional study. The relative importance of prognostic factors (systemic inflammation [modified Glasgow Prognostic Score—mGPS]), co-morbidities and physical performance (Karnofsky Performance Status), symptom burden (loss of appetite, breathlessness, nausea [Edmonton Symptom Assessment Scale], and pain [Brief Pain Inventory]), and depression severity (Patient Health Questionnaire 9) in predicting Global Health/QoL (European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire [EORTC-QLQ-C30]) were assessed using hierarchical multiple regression models. Results Fifty-five percent were women, median age was 64 years, 87% had metastatic disease, median Karnofsky Performance Status was 70, and mean global QoL was 50.5 (SD = 23.3). Worse QoL was associated with increased systemic inflammation (mGPS = 1 β = −0.12, P = 0.003; mGPS = 2 β = −0.09, P = 0.023), lower physical performance (β = 0.17, P < 0.001), reduced appetite (β = −0.15, P < 0.001), breathlessness (β = −0.11, P = 0.004), pain (β = −0.14, P = 0.002), and higher depression severity (β = −0.27, P < 0.001). The full model accounted for 29% of the observed variance in QoL scores. The strongest predictor was depression severity, accounting for 5.8% of the variance. Conclusion Depression severity was the strongest single predictor of poorer QoL in this sample of patients with advanced cancer, after accounting for a wide range of clinically relevant variables. Future studies should investigate the contribution of psychosocial variables on QoL. Our findings emphasize the importance of managing depression to achieve the best possible QoL for these patients.

• Lie, Hanne Cathrine; Mellblom, Anneli; Brekke, Mette; Finset, Arnstein; Fosså, Sophie Dorothea & Kiserud, Cecilie E. [Show all 8 contributors for this article] (2017). Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma. Supportive Care in Cancer. ISSN 0941-4355. 25(8), p. 2445–2454. doi: 10.1007/s00520-017-3651-6. Full text in Research Archive
• Mellblom, Anneli; Ruud, Ellen; Loge, Jon Håvard & Lie, Hanne Cathrine (2017). Do negative emotions expressed during follow-up consultations with adolescent survivors of childhood cancer reflect late effects? Patient Education and Counseling. ISSN 0738-3991. 100(11), p. 2098–2101. doi: 10.1016/j.pec.2017.06.008. Full text in Research Archive Show summary

  Objective: To explore whether negative emotions expressed by adolescent cancer survivors during follow-up consultations were associated with potential late effects (persisting disease or treatment-related health problems). Methods: We video-recorded 66 follow-up consultations between 10 pediatricians and 66 adolescent survivors of leukemia, lymphoma or stem-cell transplantations. In transcripts of the recordings, we identified utterances coded as both 1) expressions of negative emotions (VR-CoDES), and 2) late effect-related discussions. Principles of thematic content analysis were used to investigate associations between the two. Results: Of the 66 video-recorded consultations, 22 consultations contained 56 (49%) utterances coded as both emotional concerns and discussions of potential late effects. Negative emotions were most commonly associated with late effects such as fatigue (“I’m struggling with not having energy”), psychosocial distress (“When I touch this (scar) I become nauseous”), pain (“I’m wondering how long I am going to have this pain?”), and treatment-related effects on physical appearance (“Am I growing?”). Conclusions: Negative emotions expressed by adolescent cancer survivors during follow-up consultations were frequently associated with potential late effects. These late effects were not the medically most serious ones, but reflected issues affecting the adolescents’ daily life. Practice implication: Eliciting and exploring patients’ emotional concerns serve as means to obtain clinically relevant information regarding potential late effect and to provide emotional support.

• Korsvold, Live; Mellblom, Anneli; Finset, Arnstein; Ruud, Ellen & Lie, Hanne Cathrine (2017). A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members. European Journal of Oncology Nursing. ISSN 1462-3889. 26, p. 1–8. doi: 10.1016/j.ejon.2016.10.005. Full text in Research Archive
• Brenne, Elisabeth; Loge, Jon Håvard; Lie, Hanne Cathrine; Hjermstad, Marianne Jensen; Fayers, Peter & Kaasa, Stein (2016). The Edmonton Symptom Assessment System: Poor performance as a screener for major depression in patients with incurable cancer. Palliative Medicine. ISSN 0269-2163. 30(6), p. 587–598. doi: 10.1177/0269216315620082. Full text in Research Archive Show summary

  Background: Depressive symptoms are prevalent in patients with advanced cancer, sometimes of a severity that fulfil the criteria for a major depressive episode. Aim: The aim of this study was to investigate how the item on depression in the Edmonton Symptom Assessment System with a 0–10 Numerical Rating Scale performed as a screener for major depressive episode. A possible improved performance by adding the Edmonton Symptom Assessment System-Anxiety item was also examined. Design: An international cross-sectional study including patients with incurable cancer was conducted. The Edmonton Symptom Assessment System score was compared against major depressive episode as assessed by the Patient Health Questionnaire-9. Screening performance was examined by sensitivity, specificity and the kappa coefficient. Setting: Patients with incurable cancer (n = 969), median age 63 years and from eight nationalities provided report. Median Karnofsky Performance Status was 70. Median survival was 229 days (205–255 days). Results: Patient Health Questionnaire-9 major depressive episode was present in 133 of 969 patients (13.7%). Edmonton Symptom Assessment System-Depression screening ability for Patient Health Questionnaire-9 major depressive episode was limited. Area under the receiver operating characteristic curve was 0.71 (0.66–0.76). Valid detection or exclusion of Patient Health Questionnaire-9 major depressive episode could not be concluded at any Edmonton Symptom Assessment System-Depression cut-off; by the cut-off Numerical Rating Scale ⩾ 2, sensitivity was 0.69 and specificity was 0.60. By the cut-off Numerical Rating Scale ⩾ 4, sensitivity was 0.51 and specificity was 0.82. Combined mean ratings by Edmonton Symptom Assessment System-Depression and Edmonton Symptom Assessment System-Anxiety revealed similar limited screening ability. Conclusion: The depression and anxiety items of the Edmonton Symptom Assessment System, a frequently used assessment tool in palliative care settings, seem to measure a construct other than major depressive episode as assessed by the Patient Health Questionnaire-9 instrument.

• Mellblom, Anneli; Korsvold, Live; Ruud, Ellen; Lie, Hanne Cathrine; Loge, Jon Håvard & Finset, Arnstein (2016). Sequences of talk about emotional concerns in follow-up consultations with adolescent childhood cancer survivors. Patient Education and Counseling. ISSN 0738-3991. 99(1), p. 77–84. doi: 10.1016/j.pec.2015.07.021. Full text in Research Archive
• Korsvold, Live; Lie, Hanne Cathrine; Mellblom, Anneli; Ruud, Ellen; Loge, Jon Håvard & Finset, Arnstein (2016). Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases. International Journal of Qualitative Studies on Health and Well-being. ISSN 1748-2623. 11. doi: 10.3402/qhw.v11.30763. Full text in Research Archive Show summary

  Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients’ emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12–25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists’ communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists’ communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patient’s expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists’ communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients.

• Korsvold, Live; Mellblom, Anneli; Lie, Hanne Cathrine; Ruud, Ellen; Loge, Jon Håvard & Finset, Arnstein (2016). Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer. Patient Education and Counseling. ISSN 0738-3991. 99(10), p. 1576–1583. doi: 10.1016/j.pec.2016.03.028. Full text in Research Archive
• Lie, Hanne Cathrine; Hjermstad, Marianne Jensen; Fayers, Peter; Finset, Arnstein; Kaasa, Stein & Loge, Jon Håvard (2015). Depression in advanced cancer - Assessment challenges and associations with disease load. Journal of Affective Disorders. ISSN 0165-0327. 173, p. 176–184. doi: 10.1016/j.jad.2014.11.006. Full text in Research Archive
• Mellblom, Anneli; Korsvold, Live; Finset, Arnstein; Loge, Jon Håvard; Ruud, Ellen & Lie, Hanne Cathrine (2015). Providing information about late effects during routine follow-up consultations between pediatric oncologists and adolescent survivors: A video-based, observational study. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 4(4), p. 200–208. doi: 10.1089/jayao.2015.0037. Full text in Research Archive Show summary

  Purpose: Information about late effects is a prerequisite for survivors of childhood cancers to engage in selfmanagement of their health. Yet, many lack such knowledge. This study investigated to what extent: (1) potential late effects were discussed with adolescent and young adult (AYA)-aged survivors (of pediatric cancer), and (2) information about late effects was provided by the pediatric oncologists (POs) during routine follow-up consultations. Methods: Consultations were recorded with 10 POs and 66 adolescents, aged 12–20 years, treated for leukemia (72.7%) or lymphoma (21.2%), or who had received hematopoietic stem-cell transplantation for a benign disease (7.6%). Discussions of potential late effects were identified and coded, and then the amount of information about late effects provided was categorized into three levels: none, basic, and extended information. Results: Potential late effects were discussed in 85% of the consultations. Of these, 71% were PO initiated, and 60% concerned existing health problems. The POs provided none, basic, and extended information about late effects in 41%, 30%, and 29% of these discussions. Patients’ age, time since treatment, and risk of late effects were not associated with amount of potential late effects discussed, but the type of potential late effect (physical vs. psychosocial and current vs. future risk) and PO were. Conclusion: Potential late effects were frequently discussed, thus providing ample opportunity to provide information about late effects to adolescent cancer survivors. The observed PO variability in providing such information indicates a need for standardization of information practices.

• Lie, Hanne Cathrine; Loge, Jon Håvard; Fosså, Sophie Dorothea; Hamre, Hanne Mari; Hess, Siri Lothe & Mellblom, Anneli [Show all 8 contributors for this article] (2015). Providing information about late effects after childhood cancer: Lymphoma survivors' preferences for what, how and when. Patient Education and Counseling. ISSN 0738-3991. 98(5), p. 604–611. doi: 10.1016/j.pec.2015.01.016. Full text in Research Archive
• Janberidze, Elene; Hjermstad, Marianne Jensen; Haugen, Dagny Faksvåg; Sigurdardottir, Katrin Rut; Løhre, Erik T & Lie, Hanne Cathrine [Show all 9 contributors for this article] (2014). How Are the Patient Populations Characterized in Studies Investigating Depression in Advanced Cancer? Results From a Systematic Literature Review. Journal of Pain and Symptom Management. ISSN 0885-3924. 48(4), p. 678–698. doi: 10.1016/j.jpainsymman.2013.11.013. Full text in Research Archive
• Bjelland, Mona; Hausken, Solveig E. Sand; Sleddens, Ester FC; Andersen, Lene Frost; Lie, Hanne Cathrine & Finset, Arnstein [Show all 11 contributors for this article] (2014). Development of family and dietary habits questionnaires: the assessment of family processes, dietary habits and adolescents’ impulsiveness in Norwegian adolescents and their parents. International Journal of Behavioral Nutrition and Physical Activity. 11. doi: 10.1186/s12966-014-0130-z. Full text in Research Archive Show summary

  Background There is a need for valid and comprehensive measures of parental influence on children's energy balance-related behaviours (EBRB). Such measures should be based on a theoretical framework, acknowledging the dynamic and complex nature of interactions occurring within a family. The aim of the Family & Dietary habits (F&D) project was to develop a conceptual framework identifying important and changeable family processes influencing dietary behaviours of 13-15 year olds. A second aim was to develop valid and reliable questionnaires for adolescents and their parents (both mothers and fathers) measuring these processes. Methods A stepwise approach was used; (1) preparation of scope and structure, (2) development of the F&D questionnaires, (3) the conducting of pilot studies and (4) the conducting of validation studies (assessing internal reliability, test-retest reliability and confirmatory factor analysis) using data from a cross-sectional study. Results The conceptual framework includes psychosocial concepts such as family functioning, cohesion, conflicts, communication, work-family stress, parental practices and parental style. The physical characteristics of the home environment include accessibility and availability of different food items, while family meals are the sociocultural setting included. Individual characteristics measured are dietary intake (vegetables and sugar-sweetened beverages) and adolescents' impulsivity. The F&D questionnaires developed were tested in a test-retest (54 adolescents and 44 of their parents) and in a cross-sectional survey including 440 adolescents (13-15 year olds), 242 mothers and 155 fathers. The samples appear to be relatively representative for Norwegian adolescents and parents. For adolescents, mothers and fathers, the test-retest reliability of the dietary intake, frequencies of (family) meals, work-family stress and communication variables was satisfactory (ICC: 0.53-0.99). Barratt Impulsiveness Scale-Brief (BIS-Brief) was included, assessing adolescent's impulsivity. The internal reliability (Cronbach's alphas: 0.77/0.82) and test-retest reliability values (ICC: 0.74/0.77) of BIS-Brief were good. Conclusions The conceptual framework developed may be a useful tool in guiding measurement and assessment of the home food environment and family processes related to adolescents' dietary habits, in particular and for EBRBs more generally. The results support the use of the F&D questionnaires as psychometrically sound tools to assess family characteristics and adolescent's impulsivity.

• Janberidze, Elene; Hjermstad, Marianne Jensen; Brunelli, Cinzia; Loge, Jon Håvard; Lie, Hanne Cathrine & Kaasa, Stein [Show all 7 contributors for this article] (2014). The use of antidepressants in patients with advanced cancer - results from an international multicentre study. Psycho-Oncology. ISSN 1057-9249. 23(10), p. 1096–1102. doi: 10.1002/pon.3541. Full text in Research Archive

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• Cairns, Patrick; Knapstad, Ida Katrine; Ishaq, Bushra; Bache-Mathiesen, Lena Kristin; Wangensteen, Urd Teresia & Pedersen, Reidar [Show all 10 contributors for this article] (2026). Norway Update – Nordic ChiCaP symposium. Full text in Research Archive Show summary

  Conference talk at symposium for members of the Nordic Childhood Cancer Predisposition collaboration group – 13th-14th April 2026.

• Cairns, Patrick; Ishaq, Bushra; Knapstad, Ida Katrine; Pedersen, Reidar; Hofmann, Bjørn Morten & Wangensteen, Urd Teresia [Show all 10 contributors for this article] (2026). Hopes and Concerns of Adolescent Patients and their Caregivers Related to Genetic Predisposition Testing in Childhood Cancer Care: A Three-Year Longitudinal Follow-Up. Full text in Research Archive
• Cairns, Patrick; Ishaq, Bushra & Lie, Hanne Cathrine (2026). Psychosocial Group – Literature resource. Full text in Research Archive
• Ishaq, Bushra; Cairns, Patrick; Knapstad, Ida Katrine; Bache-Mathiesen, Lena Kristin; Bentzen, Heidi Beate & Pedersen, Reidar [Show all 10 contributors for this article] (2025). The PROTECT-CARE study: Psychosocial, communication, ethical and legal aspects of childhood cancer predisposition testing in clinical care. Full text in Research Archive
• Cairns, Patrick; Ishaq, Bushra; Knapstad, Ida Katrine; Hofmann, Bjørn Morten; Bentzen, Heidi Beate & Wangensteen, Urd Teresia [Show all 9 contributors for this article] (2025). Exploring psycho-social-ethico-legal issues related to genetic predisposition testing in pediatric cancer – the PROTECT-CARE study. Full text in Research Archive
• Demoor-Goldschmidt, Charlotte; Michel, Gisela; Roganovic, Jelena; Thierry-Chef, Isabelle; Lähteenmäki, Päivi M. & Muraca, Monica [Show all 76 contributors for this article] (2025). Addressing survivorship care gaps through digital innovation: opportunities, challenges, and ethical considerations in the e-QuoL project. doi: 10.1186/s12885-025-14897-0. Full text in Research Archive Show summary

  Background Childhood, adolescent, and young adult cancers (CAYAC) present unique challenges in oncology. Advances in treatment Have led to an 80% 5-year survival rate; however, CAYAC survivors (CAYACS) remain at high risk of long-term medical and psychosocial complications, significantly impacting their quality of life. Short and long-term follow-up care is recommended, but is often fragmented, with considerable disparities in availability and accessibility across Europe. Many existing digital tools primarily address medical needs, leaving psychosocial challenges unaddressed. The e-QuoL project aims to bridge these gaps by leveraging existing digital health solutions to provide equitable, person-centered survivorship care. Methods The e-QuoL project employs a participatory approach involving survivors, families, healthcare professionals (HCP), and researchers. Using the FormIT methodology, the project follows three phases: Explore, Create, and Evaluate. The Explore phase includes a large-scale cross-sectional survey across 15 European countries to assess the unmet needs of CAYACS and their families. The Create phase involves co-creation workshops to develop and refine digital tools, including MyCaree-QuoL tool, which will supplement survivorship care passports, to provide personalized medical and psychosocial support. The Evaluate phase comprises usability testing and clinical studies in at least seven European countries to assess effectiveness, scalability, and real-world applicability. Discussion The e-QuoL project builds on existing digital health innovations while adapting them to diverse European healthcare systems. By developing MyCaree-QuoL, the project fosters a decentralized, person-centered model of survivorship care to promote equal access to quality survivorship support for CAYACS and HCPs. Ethical considerations, including data privacy, patient consent, and equitable access, are central to the project, with dedicated Ethics and Social Challenge Groups guiding implementation. Digital disparities remain a challenge, particularly for survivors from lower socio-economic backgrounds or remote areas. To mitigate this, e-QuoL will work with healthcare professionals to offer additional in-person support to complement digital interventions. The project aligns with Europe’s Beating Cancer Plan, aiming to improve quality of life and reduce disparities in care. By fostering collaboration among 30 partners across 15 countries and hosting resources on the PanCare website, e-QuoL seeks to ensure long-term impact, contributing to the goal of high-quality, equitable survivorship care across Europe.

• Ålykkja, Anette; Mellblom, Anneli; Ruud, Ellen; Wahl, Astrid Klopstad & Lie, Hanne Cathrine (2025). Abstract title Feasibility Testing of the Nurse-Led Transitioning Adolescents Off Cancer Treatment (TACT) Intervention. Full text in Research Archive
• Keij, Sascha M.; Lie, Hanne Cathrine; Laidsaar-Powell, Rebekah; Kunneman, Marleen; Boer, Joyce E. de & Moaddine, Saïda [Show all 8 contributors for this article] (2024). Corrigendum to ‘Patient-related characteristics considered to affect patient involvement in shared decision making about treatment: A scoping review of the qualitative literature’ Patient Education and Counseling 111 (2023) 107677 (Patient Education and Counseling (2023) 111, (S0738399123000575), (10.1016/j.pec.2023.107677)). Patient Education and Counseling. ISSN 0738-3991. doi: 10.1016/j.pec.2024.108257. Full text in Research Archive
• Wahl, Astrid Klopstad; Mellblom, Anneli; Ruud, Ellen; Ålykkja, Anette & Lie, Hanne Cathrine (2024). Transition from active treatment to follow-up for adolescent survivors and their parents. Full text in Research Archive
• Ålykkja, Anette; Larsen, Marie Hamilton; Ruud, Ellen; Puhr, Anita & Lie, Hanne Cathrine (2024). The consequences of long-term and late effects on pediatric brain tumor survivors` everyday functioning. Full text in Research Archive
• Heggebø, Liv Cathrine; Borgen, Ida Maria Henriksen; Rylander, Hillevi; Kiserud, Cecilie E.; Nordenmark, Tonje Kristin Haug & Hellebust, Taran Annette Paulsen [Show all 44 contributors for this article] (2023). Investigating survival, quality of life and cognition in PROton versus photon therapy for IDH- mutated diffuse grade 2 and 3 GLIOmas (PRO-GLIO): a randomised controlled trial in Norway and Sweden. BMJ Open. 13(3). doi: 10.1136/bmjopen-2022-070071. Full text in Research Archive Show summary

  Abstract Introduction The use of proton therapy increases globally despite a lack of randomised controlled trials demonstrating its efficacy and safety. Proton therapy enables sparing of non-neoplastic tissue from radiation. This is principally beneficial and holds promise of reduced long-term side effects. However, the sparing of seemingly non-cancerous tissue is not necessarily positive for isocitrate dehydrogenase (IDH)-mutated diffuse gliomas grade 2–3, which have a diffuse growth pattern. With their relatively good prognosis, yet incurable nature, therapy needs to be delicately balanced to achieve a maximal survival benefit combined with an optimised quality of life. Methods and analysis PRO-GLIO (PROton versus photon therapy in IDH-mutated diffuse grade 2 and 3 GLIOmas) is an open-label, multicentre, randomised phase III non-inferiority study. 224 patients aged 18–65 years with IDH-mutated diffuse gliomas grade 2–3 from Norway and Sweden will be randomised 1:1 to radiotherapy delivered with protons (experimental arm) or photons (standard arm). First intervention-free survival at 2 years is the primary endpoint. Key secondary endpoints are fatigue and cognitive impairment, both at 2 years. Additional secondary outcomes include several survival measures, health-related quality of life parameters and health economy endpoints. Ethics and dissemination To implement proton therapy as part of standard of care for patients with IDH-mutated diffuse gliomas grade 2–3, it should be deemed safe. With its randomised controlled design testing proton versus photon therapy, PRO-GLIO will provide important information for this patient population concerning safety, cognition, fatigue and other quality of life parameters. As proton therapy is considerably more costly than its photon counterpart, cost-effectiveness will also be evaluated. PRO-GLIO is approved by ethical committees in Norway (Regional Committee for Medical & Health Research Ethics) and Sweden (The Swedish Ethical Review Authority) and patient inclusion has commenced. Trial results will be published in international peer-reviewed journals, relevant conferences, national and international meetings and expert forums.

• Egenberg, Herman Escher; Gerwing, Jennifer; Lie, Hanne Cathrine; Gulbrandsen, Pål & Menichetti, Julia (2023). If I say…teach-back. Patient Education and Counseling. ISSN 0738-3991. 116. doi: 10.1016/j.pec.2023.107982. Full text in Research Archive
• Egenberg, Herman Escher; Gerwing, Jennifer; Lie, Hanne Cathrine; Gulbrandsen, Pål & Menichetti, Julia (2023). Erratum: Withdrawal notice to “If I say…teach-back” [Patient Educ Couns 116 (2023) 107982] (Patient Education and Counseling (2023) 116, (S0738399123003440), (10.1016/j.pec.2023.107964)). Patient Education and Counseling. ISSN 0738-3991. 116. doi: 10.1016/j.pec.2023.107991. Full text in Research Archive
• Larsen, Elna Hamilton; Wahl, Astrid Klopstad; Ruud, Ellen; Mellblom, Anneli; Ålykkja, Anette & Lie, Hanne Cathrine (2023). Adolescent cancer survivors and their parents’ experiences with the transition off-treatment to survivorship – A qualitative interview study. Full text in Research Archive
• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Underhaug, Katrine Aass; Ruud, Ellen & Lie, Hanne Cathrine (2023). The Post-it note just said leukaemia -experiences of teachers and local stakeholders supporting young childhood cancer survivors at school: A qualitative study. Full text in Research Archive
• Nilsen, Tormod Skogstad; Sæter, Mali; Sarvari, Sebastian; Reinertsen, Kristin Valborg; Johansen, Sara Hassing & Edvardsen, Elisabeth Rustad [Show all 17 contributors for this article] (2023). Effects of Aerobic Exercise on Cardiorespiratory Fitness, Cardiovascular Risk Factors, and Patient-Reported Outcomes in Long-Term Breast Cancer Survivors: Protocol for a Randomized Controlled Trial. JMIR Research Protocols. 12. doi: 10.2196/45244. Full text in Research Archive Show summary

  Background Anthracycline-based chemotherapy has been mainstay of adjuvant breast cancer therapy for decades. Although effective, anthracyclines place long-term breast cancer survivors at risk of late effects, such as reduced cardiorespiratory fitness and increased risk of cardiovascular disease. Previous research has shown beneficial effects of exercise training on cardiorespiratory fitness, but the effects of exercise on limiting factors for cardiorespiratory fitness, cardiovascular risk factors, and patient-reported outcomes in long-term survivors are less clear. Whether previous exposure to breast cancer therapy modulates the effects of exercise is also unknown. Objective The primary aim of the CAUSE (Cardiovascular Survivors Exercise) trial is to examine the effect of aerobic exercise on cardiorespiratory fitness in anthracycline-treated long-term breast cancer survivors. Secondary aims are to examine effects of exercise training on limiting factors for cardiorespiratory fitness, cardiovascular risk factors, and patient-reported outcomes, and to compare baseline values and effects of exercise training between similar-aged women with and those without prior breast cancer. A third aim is to examine the 24-month postintervention effects of aerobic exercise on primary and secondary outcomes. Methods The CAUSE trial is a 2-armed randomized controlled trial, where 140 long-term breast cancer survivors, 8-12 years post diagnosis, are assigned to a 5-month nonlinear aerobic exercise program with 3 weekly sessions or to standard care. Seventy similar-aged women with no history of cancer will undergo the same exercise program. Cardiorespiratory fitness measured as peak oxygen consumption (VO2peak), limiting factors for VO2peak (eg, cardiac function, pulmonary function, hemoglobin mass, blood volume, and skeletal muscle characteristics), cardiovascular risk factors (eg, hypertension, diabetes, dyslipidemia, obesity, physical activity level, and smoking status), and patient-reported outcomes (eg, body image, fatigue, mental health, and health-related quality of life) will be assessed at baseline, post intervention, and 24 months post intervention. Results A total of 209 patients were included from October 2020 to August 2022, and postintervention assessments were completed in January 2023. The 24-month follow-up will be completed in February 2025. Conclusions The findings from the CAUSE trial will provide novel scientific understanding of the potential benefits of exercise training in long-term breast cancer survivors. Trial Registration ClinicalTrials.gov NCT04307407; https://clinicaltrials.gov/ct2/show/NCT04307407 International Registered Report Identifier (IRRID) DERR1-10.2196/45244

• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Underhaug, Katrine Aass; Ruud, Ellen & Lie, Hanne Cathrine (2022). "The post-it note just said leukemia” - experiences of teachers and local stakeholders of young childhood cancer survivors attending school – a qualitative study from the PACCS group. Full text in Research Archive
• Lie, Hanne Cathrine; Anderssen, Sigmund Alfred; Rueegg, Corina Silvia; Raastad, Truls; Grydeland, May & Thorsen, Lene [Show all 21 contributors for this article] (2022). The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study. JMIR Research Protocols. 11(3). doi: 10.2196/35838. Full text in Research Archive Show summary

  Methods Results Discussion References Abbreviations Copyright Abstract Background: Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. Objective: The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). Methods: The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ≥1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. Results: Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. Conclusions: The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation.

• Menichetti, Julia; Gerwing, Jennifer; Landmark, Anne Marie Dalby; Lie, Hanne Cathrine & Gulbrandsen, Pål (2022). Formulations used by doctors to provide information to patients: A video-based study. Full text in Research Archive
• Larsen, Elna Hamilton; Wahl, Astrid Klopstad; Ruud, Ellen; Mellblom, Anneli & Lie, Hanne Cathrine (2022). Adolescents transition experiences when active treatment ends - Results from a qualitative interview study. Full text in Research Archive
• Juvet, Lene Kristine; Brembo, Espen Andreas; Eide, Hilde; Heyn, Lena; Mellblom, Anneli & Gulbrandsen, Pål [Show all 11 contributors for this article] (2021). Communication strategies for providing information in talks with patients: A systematic review. Full text in Research Archive
• Larsen, Elna Hamilton; Mellblom, Anneli; Wahl, Astrid Klopstad; Ruud, Ellen & Lie, Hanne Cathrine (2021). Transitioning to survivorship - Healthcare Professionals views on the off- treatment transition for adolescents with cancer. Full text in Research Archive
• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ruud, Ellen; Mellblom, Anneli; Helland, Sunniva & Lie, Hanne Cathrine (2021). I have to do things different, but make it work - childhood cancer survivors experience of self management in daily living. Full text in Research Archive
• Lie, Hanne Cathrine; Mellblom, Anneli; Juvet, Lene Kristine; Heyn, Lena; Sundling, Vibeke & Brembo, Espen Andreas [Show all 12 contributors for this article] (2020). Spoken communication strategies for effective information provision in the medical consultation: A systematic review. Full text in Research Archive
• Ålykkja, Anette; Ruud, Ellen; Larsen, Marie Hamilton; Vatne, Torun Marie & Lie, Hanne Cathrine (2019). Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers' experiences with follow-up care after paediatric brain tumour. Full text in Research Archive
• Sand, Kari; Lie, Hanne Cathrine; Kiserud, Cecilie E.; Loge, Jon Håvard & Lund, Jo-Åsmund (2018). The physician perspective regarding providing information about late-effects to cancer patients and survivors: The dilemma of when and what. Full text in Research Archive
• Sand, Kari; Lie, Hanne Cathrine; Loge, Jon Håvard; Kiserud, Cecilie E. & Lund, Jo-Åsmund (2018). The physician perspective regarding providing information about late-effects to cancer patients and survivors: The dilemma of when and what. A focus group study among Norwegian GPs and oncologists. Full text in Research Archive
• Lie, Hanne Cathrine (2017). Mind the Gap: (Unmet) Information needs in cancer care. Patient Education and Counseling. ISSN 0738-3991. 100(3), p. 381–382. doi: 10.1016/j.pec.2017.02.013. Full text in Research Archive
• Sand, Kari; Lie, Hanne Cathrine; Kiserud, Cecilie E.; Loge, Jon Håvard & Lund, Jo-Åsmund (2016). Barriers and opportunities for long-term follow-up care of cancer survivors. A focus group study among Norwegian general practitioners and oncologists. Full text in Research Archive Show summary

  Background: Cancer therapy can cause persisting or late-onset health problems, late effects. At present, there is no consensus regarding the appropriate organization and content of follow-up care of cancer survivors with, or at risk for, late effects. The aim of the study is to examine oncologists' and general practitioners’ views and preferences for models of long-term follow-up care of cancer survivors regarding late effects. Methods & Materials: We conducted qualitative, focus groups interviews with GPs and oncologists across Norway. So far, 22 oncologists and 24 GPs have participated in 10 focus groups. Six further focus-group interviews are planned. The interviews were audio-recorded, transcribed and analyzed using principles of content analysis. Results: Preliminary analysis of barriers for long-term follow-up care showed that oncologists seldom meet cancer survivors with late effects in their daily clinical practice, while GPs seldom meet the patient during his/her cancer treatment. Both groups expressed limited knowledge of late effects, available treatment for late effects and rehabilitation options. In order to facilitate better long-term follow-up care, both oncologists and GPs expressed a need for better communication between primary and specialist care. Dedicated survivorship clinics/coordinators would allow for better coordination of care between health care professionals, serve as a place to contact for information and to accumulate important knowledge regarding late effects and rehabilitation services. GPs regard themselves as the main responsible for the follow-up care, as long the oncologists provide specific procedures for follow-up care for each survivor (e.g. survivorship care passport), and the survivors themselves take responsibility for contacting health care providers when necessary. Conclusion: Preliminary analysis indicates that oncologists and GPs supports a shard care model for long term follow-up of cancer survivors in Norway, a model in which the specialist and the primary care physicians have defined responsibilities in survivorship care pathways.

• Janberidze, Elene; Hjermstad, Marianne Jensen; Brunelli, Cinzia; Loge, Jon Håvard; Lie, Hanne Cathrine & Kaasa, Stein [Show all 7 contributors for this article] (2014). The use of antidepressants in patients with advanced cancer – results from an international multicenter study. Full text in Research Archive

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