Hanne Cathrine Lie

• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Aass Underhaug, Katrine; 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.

• 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
• 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
• 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
• 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.

• 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.
• Keij, Sascha M.; Lie, Hanne Cathrine; Laidsaar-Powell, Rebekah; Kunneman, Marleen; de Boer, Joyce E. & 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
• 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. ISSN 1664-1078. 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.

• 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
• 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. 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; 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.

• 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
• 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. ISSN 2045-2322. 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.

• 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. 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.

• 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. ISSN 2072-6694. 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

• 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.

• 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.

• 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.

• 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. ISSN 2072-6694. 13:5800(22), p. 1–13. doi: 10.3390/cancers13225800. Full text in Research Archive
• 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.
• Lie, Hanne Cathrine; Juvet, Lene Kristine; Street, Jr, Richard L.; 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.

• 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.

• Murray, Craig Edward Sørheim; Von Possel, Nina; 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
• 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. 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.

• 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
• 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. 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.

• 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
• 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.

• 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
• 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
• 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
• 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
• 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
• 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. ISSN 1475-2891. 18:20, p. 1–5. doi: 10.1186/s12937-019-0447-1. Full text in Research Archive
• 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.

• 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.
• 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
• 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
• 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
• 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.
• 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.
• 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.
• 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
• 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
• 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.
• 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. 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.
• 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.
• Mellblom, Anneli; Finset, Arnstein; Korsvold, Live; Loge, Jon Håvard; Ruud, Ellen & Lie, Hanne Cathrine (2014). Emotional concerns in follow-up consultations between paediatric oncologists and adolescent survivors: A video-based observational study. Psycho-Oncology. ISSN 1057-9249. 23(12), p. 1365–1372. doi: 10.1002/pon.3568.
• 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. ISSN 1479-5868. 11. doi: 10.1186/s12966-014-0130-z. Full text in Research Archive
• 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.
• 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.
• Hjermstad, Marianne Jensen; Lie, Hanne Cathrine; Caraceni, Augusto; Currow, David; Fainsinger, Robin & Gundersen, Odd Erik [Show all 13 contributors for this article] (2012). Computer-Based Symptom Assessment Is Feasible in Patients With Advanced Cancer: Results From an International Multicenter Study, the EPCRC-CSA. Journal of Pain and Symptom Management. ISSN 0885-3924. 44(5), p. 639–654. doi: 10.1016/j.jpainsymman.2011.10.025.

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• 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.
• 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.
• 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.
• 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 .
• 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. ISSN 1929-0748. 12. doi: 10.2196/45244. 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. ISSN 2044-6055. 13(3). doi: 10.1136/bmjopen-2022-070071. Full text in Research Archive
• 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 .
• 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.
• 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 .
• 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. ISSN 1929-0748. 11(3). doi: 10.2196/35838. 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.

• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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. 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.
• Mellblom, Anneli; Lie, Hanne Cathrine; Loge, Jon Håvard; Ruud, Ellen & Finset, Arnstein (2013). WHAT ARE THEY WORRIED ABOUT? THE CONTENT OF EMOTIONAL CONCERNS EXPRESSED AT FOLLOW-UP CONSULTATIONS WITH ADOLESCENTS AFTER CHILDHOOD CANCER: A VIDEO-BASED OBSERVATIONAL STUDY. Pediatric Blood & Cancer. ISSN 1545-5009. 60, p. 21–22.
• Korsvold, Live; Finset, Arnstein; Loge, Jon Håvard; Ruud, Ellen & Lie, Hanne Cathrine (2013). DELIVERING BAD NEWS TO ANGRY ADOLESCENT PATIENTS - A LITERATURE REVIEW AND A CASE ILLUSTRATION. Pediatric Blood & Cancer. ISSN 1545-5009. 60, p. 179–179.
• Janberidze, Elene; Hjermstad, Marianne Jensen; Brunelli, Cinzia; Loge, Jon Håvard; Lie, Hanne Cathrine & Kaasa, Stein [Show all 7 contributors for this article] (2013). Depression and use of antidepressants in patients with advanced cancer. Results from an international multi-center study. European Journal of Palliative Care. ISSN 1352-2779.
• Mellblom, Anneli; Lie, Hanne Cathrine; Ruud, E & Finset, Arnstein (2013). Expression of Negative Emotion During Follow-up Consultations After Childhood Cancer With Adolescents: A Video-Based Observational Study. Psycho-Oncology. ISSN 1057-9249. 22, p. 65–66.
• Janberidze, Elene; Hjermstad, Marianne Jensen; Brunelli, Cinzia; Loge, Jon Håvard; Lie, Hanne Cathrine & Kaasa, Stein [Show all 7 contributors for this article] (2013). Depression and use of antidepressants in patients with advanced cancer. Results from an international multi-center study. Show summary

  English

• Brenne, Elisabeth; Loge, Jon Håvard; Lie, Hanne Cathrine; Fayers, Peter; Hjermstad, Marianne Jensen & Kaasa, Stein (2012). The ESAS as a screening tool of depression in palliative care cancer patients.
• Finset, Arnstein & Lie, Hanne Cathrine (2010). Health literacy and communication explored from different angles. Patient Education and Counseling. ISSN 0738-3991. 79(1), p. 1–2. doi: 10.1016/j.pec.2010.02.019.

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