Tonje Lundeby

• Lundeby, Tonje; Bye, Asta; Yri, Olav Erich; Wester, Torunn Elin; Aass, Nina Kathrine & Hanssen, Sjur Bjørnar [Vis alle 8 forfattere av denne artikkelen] (2026). Living with brain metastases—A longitudinal qualitative study of patient experiences from time of diagnosis. Neuro-Oncology Practice. ISSN 2054-2577. 13(4), s. 723–732. doi: 10.1093/nop/npag019. Fulltekst i vitenarkiv Vis sammendrag

  Abstract Background Brain metastases (BM) are prevalent intracranial neoplasms in adults, affecting 20%-40% of cancer patients. With improved systemic therapies and neuroimaging, the frequency of BM diagnoses is rising. Despite advancements and longer survival time, the prognosis remains poor, with survival rates ranging from 3 months to over a year, depending on the diagnosis. This qualitative study provides insight into the patients' needs, experiences, and perspectives upon BM diagnosis. The aim of the study was to explore how patients experience being diagnosed with BM, their care and follow-up, and how BM impacts their lives and concerns. Methods A qualitative study using longitudinal semi-structured interviews with patients recently diagnosed with first-time BM. Participants were recruited from one Norwegian hospital, with interviews conducted at 3 intervals over 4 months. Inclusion criteria included age ≥18, verified BM diagnosis, and ability to consent and participate in interviews. Inductive thematic analyses were performed to identify overarching themes. Results Twenty-two patients participated, with interviews revealing 4 themes: (1) BM as either an additional burden or more of the same, (2) trust in the healthcare system despite unmet needs, (3) distancing from illness, and (4) acceptance of and adjustment to symptom burden. Patients expressed varied emotional responses, practical challenges, and evolving information needs over time. Conclusion Patients diagnosed with BM face multifaceted challenges. A patient-centered approach, emphasizing clear communication, symptom management, and tailored care, is essential. Understanding patient experiences can help healthcare providers offer personalized care. Continued research is needed to address the unique needs of this population and improve care practices.

• Guldhav, Kristin Vassbotn; Mcaleavey, Andrew Athan; Aass, Nina Kathrine; Andersen, Sigve; Christensen, Bente Mirjam & Dajani, Olav [Vis alle 19 forfattere av denne artikkelen] (2026). Caregiver satisfaction with early integrated palliative care in oncology: secondary outcomes from the PALLiON cluster-RCT. Frontiers in Oncology. 16, s. 1–13. doi: 10.3389/fonc.2026.1787814. Fulltekst i vitenarkiv Vis sammendrag

  Introduction Palliative care is often introduced late in the disease trajectory. Earlier access to palliative care has been reported to benefit patient outcomes, but few studies have explored its impact on caregivers. PALLiON (PALLiative care Integrated in ONcology) was a cluster-randomized controlled trial designed to integrate systematic palliative care earlier in oncology settings. The aim of this follow-up study was to assess whether the intervention influenced caregivers’ satisfaction with care in the intervention group compared to the standard care group, and to explore whether patients’ quality of life (QoL) at inclusion influenced caregivers’ satisfaction with care over time. Methods The trial was conducted across 12 Norwegian hospitals. The intervention included a physician education program, a patient-centered care pathway, and systematic symptom assessment. Adult patients with advanced cancer and their caregivers were recruited. Caregivers’ satisfaction with care was assessed longitudinally using the FAMCARE-20 scale, while patients’ QoL was measured with the EORTC QLQ-C15-PAL questionnaire. Linear mixed-effects regression models were used to examine the intervention’s effects, and partial least squares regression to examine associations between the intervention and responses to each FAMCARE-20 item. Results A total of 432 caregivers of 660 patients participated between 2017 and 2021. The average caregiver age was 61.8 years (SD = 13.2), and 71% were spouses or partners. The intervention had no significant effect on caregivers’ overall satisfaction with care ( B  = -0.070, 95% CI [-0.23, 0.082], β  = 0.02, p  = 0.35), and the groups did not significantly differ in slope of satisfaction with care over the first 6 months ( B = 0.040, 95% CI = [0.003, 0.08], β  = 0.07, p  = 0.07). Lower patient QoL at baseline was significantly associated with greater increases in caregiver satisfaction over time in both groups ( B  = 0.001, 95% CI [0.0001, 0.003], β  = 0.06, p  = 0.03). Conclusions Caregivers’ satisfaction with care did not differ between the intervention and control groups. Satisfaction seemed to be more affected by patients’ baseline QoL rather than early palliative care. Thus, a systematic, person-centered approach rooted in needs may be more beneficial than a purely time-based palliative care model.

• Kathrin, Cresswell,; An, Jacobs,; Anne-Lore, Scherrens,; Lise, Rosquin,; Antonio, Luyten, Julien & Lundereng, Elias David [Vis alle 16 forfattere av denne artikkelen] (2026). Exploring perceptions of digital patient reported outcome measures: a multi-site qualitative case study in four European oncology outpatient clinics | Health and Quality of Life Outcomes | Springer Nature Link. Health and Quality of Life Outcomes. doi: 10.1186/s12955-026-02574-0. Fulltekst i vitenarkiv Vis sammendrag

  Digital Patient Reported Outcome Measures (PROMs) can help to promote patient-centred care (PCC). However, they are currently not routinely used, potentially compromising patient outcomes. In this work we sought to (i) explore existing processes, patient and healthcare professionals’ (HCP) perceptions of current gaps in PCC and (ii) their views on how a PROMs-based digital system could help to address these gaps in four European oncology outpatient clinics. We conducted a qualitative multi-site case study including healthcare staff (organisational leaders, managers and HCPs), patients being treated for cancer and caregivers in four outpatient clinics in Brussels (Belgium), Edinburgh (United Kingdom), Oslo (Norway), and Valencia (Spain). Data were collected through a series of semi-structured interviews to explore existing work practices, needs and attitudes. We also conducted non-participant observations of staff meetings and clinic activities to explore existing processes. Data were analysed through a mixture of inductive and deductive approaches drawing on the Technology, People, Organizations, and Macroenvironmental (TPOM) factors framework. We conducted 99 interviews with HCPs, patients and caregivers and 30 observations across the four sites. PCC was regarded as important across all sites. We observed limited existing efforts on systematically recording psychosocial needs of patients. Participants reported concerns that a new digital system to record PROMs may result in increased workloads for clinical staff and adversely impact patient-clinician relationships. Attitudes were influenced by previous experience with digital systems. Organisational leadership and support were viewed as crucial in facilitating adoption, including efforts to train and engage clinical and patient users, making available sufficient resources, and including end-users in system design. While digital PROMs have the potential to enhance PCC in cancer, their routine use is often hindered by sociotechnical challenges. This issue persists across different countries. Success in developing and implementing digital PROMs will require tailored system design and implementation strategies being cognisant of various stakeholder needs. This may include supplementing technological aspects of interventions with educational strategies, supporting local adaptations of designs, and aligning with clinician and organisational drivers for implementation.

• Landschoot, Femke van; Scherrens, Anne Lore; Jacobs, An; Deliens, Luc; Pardon, Koen & Kaasa, Stein [Vis alle 19 forfattere av denne artikkelen] (2026). IT Barriers and Enablers for Implementing Electronic Patient Reported Outcome Measures: A Multi-Site Qualitative Study in Nine European Oncology Clinics. Studies in Health Technology and Informatics. ISSN 0926-9630. 336, s. 2475–2476. doi: 10.3233/SHTI260715. Fulltekst i vitenarkiv
• Lundereng, E.D.; Brkic, A.; Fallon, M.; Cresswell, K.; Deliens, L. & Pardon, K. [Vis alle 70 forfattere av denne artikkelen] (2026). Opportunities and challenges in implementing digital patient-centred cancer care in Europe—a qualitative study of several ESMO Designated Centres. ESMO Real World Data and Digital Oncology. 12, s. 100696–100696. doi: 10.1016/j.esmorw.2026.100696. Fulltekst i vitenarkiv Vis sammendrag

  Guided by expert perspectives from the ESMO Designated Centres (DCs), the European Union-funded MyPath project is developing a digital solution incorporating patient-reported outcome measures to operationalise PCC across diverse European contexts. This study aims to explore challenges and opportunities for implementing digital solutions to enhance PCC in oncology, ensuring relevance and scalability across Europe using insights from ESMO DCs. The findings show that effective digital PCC depends not only on technical integration and clinical training but also on adaptability to different care settings, infrastructures, and professional cultures. This study highlights the conditions for scalable implementation of digital PCC across Europe, offering practical implications for health system leaders and policymakers.

• Lundereng, Elias David; Brkic, Alen; Absolom, Kate; Andvik, Elisabeth; Beernaert, Kim & Cresswell, Kathrin [Vis alle 21 forfattere av denne artikkelen] (2026). Balancing ideals and realities: health care professionals’ perspectives of and attitudes toward digital patient-centered cancer care. Quality of Life Research. ISSN 0962-9343. 35. doi: 10.1007/s11136-025-04103-w. Fulltekst i vitenarkiv Vis sammendrag

  Purpose Patient-centered care (PCC) improves quality of life, symptom management and healthcare outcomes in oncology. However, integration into routine cancer care remains limited. Digital solutions using patient-reported outcome measures (PROMs) offer a potential mechanism to operationalize PCC. This study explored healthcare professionals’ (HCPs) pre-implementation perspectives on using digital PROMs to support PCC in Norwegian oncology outpatient clinics, informing the design and implementation strategies of the European MyPath digital solution. Methods Semi-structured interviews (n = 29) and three focus groups (n = 16) were conducted with varied HCPs across four Norwegian hospitals. Interviews explored perceptions of PCC, experiences with PROMs, and requirements for digital implementation. Data were analyzed using thematic analysis, combining inductive and deductive coding guided by the TPOM framework. Results Four themes emerged: (1) balancing PCC with disease-centered practices, (2) integrating PCC into daily routines, (3) customization and patient acceptance of digital tools, and (4) combining patient-reported data with clinical autonomy. HCPs viewed digital PROMs as promising for facilitating PCC but emphasized that successful implementation requires workflow alignment, adaptable digital solutions, and strong stakeholder engagement. Concerns included patient digital literacy, workload implications, and overreliance on PROMs at the expense of direct patient interaction. Conclusion Our findings highlight a tension between HCPs’ needs for technical functionality and workflow alignment, and the support required to adapt their practice to fully realize PCC through digital tools. Integrating PCC successfully requires organizational, cultural, and workflow adaptations, alongside active HCP engagement in design and implementation. These changes are essential to reposition PCC as an integral rather than competing component of high-quality cancer care.

• Shkodra, Morena; Urrizola, Amaia; Fallon, Marie; Sjøgren, Per; Everdingen, Marieke van den Beuken-van & Hagen, Katarina Margareta Rønning [Vis alle 12 forfattere av denne artikkelen] (2025). The MyPath Pain Pathway: Developing a Digital Patient-Centred Care Pathway for Cancer Pain. Journal of Pain and Symptom Management. ISSN 0885-3924. 70(6), s. 592–601. doi: 10.1016/j.jpainsymman.2025.08.012. Fulltekst i vitenarkiv
• Skåre, Terese Solvoll; Lundeby, Tonje; Lund, Jo-Åsmund; Lundereng, Elias David; Kaasa, Stein & Glas, Nienke de [Vis alle 9 forfattere av denne artikkelen] (2025). Exploring Perspectives of Patients With Cancer on Implementing Electronic Patient-Reported Outcome Measures to Enhance Patient-Centered Care: Qualitative Study. JMIR Cancer. 11, s. 1–15. doi: 10.2196/79144. Fulltekst i vitenarkiv Vis sammendrag

  Background: Systematic symptom management is a crucial component in patient-centred cancer care. Despite advancements in symptom management and the development of numerous electronic patient-reported outcome tools (ePROMs), integrating these tools into clinical practice remains challenging. Engaging key stakeholders, including patients, in the development of ePROM tools is pivotal to fostering the adaption of such tools. As part of an innovation and implementation study aimed at enhancing efficiency and patient-centred care through the development of digital patient-centred care pathways, we explored cancer patients’ perspectives on current clinical practice regarding symptom management and patient-centred care, as well as their needs and preferences related to ePROMs. Objective: To explore cancer patients’ perspectives on PCC and symptom management, including their experience with current clinical practice and their views on how ePROMs might enhance patient-centred follow-up. Methods: A two-stage qualitative design was employed. In Stage 1 semi-structured individual interviews were conducted to gain an in-depth understanding of patients’ experiences with current clinical practice, including perceived challenges and unmet needs. Stage 2 involved structured interviews to further explore patients’ perspectives on the potential role of ePROMs in enhancing patient-centred follow up. Results: A total of ten patients were included in the study, participating in either or both stages. Two main themes were developed through a reflexive thematic analysis process: 1) Symptom management in the shadow of disease-centred care, and 2) ePROMs: Bridging holistic care and disease management. Theme 1 highlighted how patients made sense of symptom management within a healthcare context primarily focused on disease treatment and progression. Their narratives revealed that biomedical concerns often dominated clinical encounters, while patients’ broader lived experiences and symptom-related needs were marginalised. Patients shared an understanding that it was their own responsibility to redirect the focus of clinical consultations toward symptoms. While they generally expressed satisfaction with the care received, they also described a sense of unmet needs that remained unaddressed. The second theme explored how patients made sense of the potential role of an ePROM tool in supporting more patient-centred cancer care. Their accounts revealed both perceived barriers and facilitators to its use, shaped by the expectations and needs that contrasted with current clinical practices. Central to this was a belief, emerging through engagement with the conceptual tool’s functionalities, that it could enable a more holistic approach to care, extending beyond physical symptom to encompass the lived experience of cancer. Conclusions: Patients often felt personally responsible for ensuring their symptoms were addressed, indicating shortcomings in follow-up and communication. ePROMs were identified as a promising tool to strengthen patient-centred care by amplifying patient voices and enabling more holistic and responsive follow-up. Integrating ePROMs into routine care may improve symptom visibility, foster shared understanding between patients and healthcare professionals, and support more equitable care delivery.

• Hustad, Kristin Solheim; Koteng, Lisa Heide; Urrizola, Amaia; Arends, J.; Bye, Asta & Dajani, Olav [Vis alle 71 forfattere av denne artikkelen] (2025). Practical cancer nutrition, from guidelines to clinical practice: a digital solution to patient-centred care. ESMO Open. 10(4). doi: 10.1016/j.esmoop.2025.104529. Fulltekst i vitenarkiv Vis sammendrag

  Background Malnutrition affects 20%-70% of cancer patients, depending on tumour type, disease stage, and clinical setting. While nutritional care is essential for improving patients’ quality of life and clinical outcomes, it is not systematically integrated into routine cancer care. MyPath is a European Union project aiming to implement patient-centred care (PCC) at nine European cancer centres using implementation science. Multidisciplinary teams have developed standardised digitally supported PCC pathways based on patient-reported outcomes (PROs) with linked evidence-based management options. Through systematic assessment and management of common symptoms and psychosocial problems in cancer patients, MyPath aims to facilitate changes in clinical practice to improve PCC for all. As part of this, the MyPath Nutrition Care Pathway (NCP) aims to facilitate necessary clinical changes to routinely assess and address nutrition in all patients. Materials and methods Between September 2022 and August 2024, an international multidisciplinary team reviewed evidence-based nutrition guidelines to select relevant PROs and other variables necessary to systematically assess patients, allowing for tailored nutritional care. Results The MyPath NCP assessment relies on nutritional status (Malnutrition Screening Tool for malnutrition risk, modified Global Leadership Initiative on Malnutrition criteria for malnutrition, and body mass index/weight change for obesity/unintentional weight gain), health status (functional status, cancer diagnosis and prognosis, and prehabilitation needs), and inflammatory status (C-reactive protein levels). Based on this assessment, the digital solution suggests tailored, evidence-based nutritional interventions. Continuous monitoring through PROs and clinical consultations will customise care to patients’ dynamic nutritional needs. The first version of this digital solution will be piloted in 2025. Conclusions Inconsistent implementation of nutrition guidelines is a key challenge in cancer care. The MyPath NCP offers an accessible, patient-centred assessment and management system that integrates nutritional care into routine cancer care, providing a versatile solution that can be implemented across diverse health care settings.

• Skåre, Terese Solvoll; Lundeby, Tonje; Lund, Jo-Åsmund; Lundereng, Elias David; Kaasa, Stein & Glas, Nienke de [Vis alle 9 forfattere av denne artikkelen] (2025). Exploring perspectives of patients with cancer on implementing electronic patient-reported outcome measures to enhance patient-centred care: qualitative study. JMIR Cancer. 11, s. 1–15. doi: https:/preprints.jmir.org/preprint/79144. Fulltekst i vitenarkiv Vis sammendrag

  Background: Systematic symptom management is a crucial component in patient-centered cancer care. Despite the development of numerous electronic patient-reported outcome measure (ePROM) tools, integrating these tools into clinical practice remains challenging. Engaging key stakeholders, including patients, in the development of ePROM tools is pivotal to fostering the adoption of such tools. As part of an innovation and implementation study aimed at enhancing efficiency and patient-centered care (PCC) through the development of digital PCC pathways, we explored the perspectives of patients with cancer on current clinical practice regarding symptom management and PCC, as well as their needs and preferences related to ePROMs. Objective: This study aims to explore the perspectives of patients with cancer on PCC and symptom management, including their experience with current clinical practice and their views on how ePROMs might enhance patient-centered follow-up. Methods: A 2-stage qualitative design was used. In stage 1, semistructured individual interviews were conducted to gain an in-depth understanding of patients’ experiences with current clinical practice, including perceived challenges and unmet needs. Stage 2 involved structured interviews to further explore patients’ perspectives on the potential role of ePROMs in enhancing patient-centered follow-up. Results: A total of 10 patients were included in the study, participating in either or both stages. Two main themes were developed through a reflexive thematic analysis process: (1) symptom management in the shadow of disease-centered care, and (2) ePROMs: bridging holistic care and disease management. Theme 1 highlighted how patients made sense of symptom management within a health care context primarily focused on disease treatment and progression. Their narratives revealed that biomedical concerns often dominated clinical encounters, while patients’ broader lived experiences and symptom-related needs were marginalized. Patients shared an understanding that it was their own responsibility to redirect the focus of clinical consultations toward symptoms. While they generally expressed satisfaction with the care received, they also described a sense of unmet needs that remained unaddressed. The second theme explored how patients made sense of the potential role of an ePROM tool in supporting more patient-centered cancer care. Their accounts revealed both perceived barriers and facilitators to its use, shaped by the expectations and needs that contrasted with current clinical practices. Central to this was a belief, emerging through engagement with the conceptual tool’s functionalities, that it could enable a more holistic approach to care, extending beyond physical symptom to encompass the lived experience of cancer. Conclusions: Patients often felt personally responsible for ensuring that their symptoms were addressed, indicating shortcomings in follow-up and communication. ePROMs were identified as a promising tool to strengthen PCC by amplifying patient voices and enabling more holistic and responsive follow-up. Integrating ePROMs into routine care may improve symptom visibility, foster shared understanding between patients and health care professionals, and support more equitable care delivery.

• Lillekroken, Daniela; Bye, Asta; Halvorsrud, Liv & Lundeby, Tonje (2025). Living with brain metastasis – a qualitative study of patients’ and family members’ coping strategies. International Journal of Qualitative Studies on Health and Well-being. ISSN 1748-2623. 20(1), s. 1–20. doi: 10.1080/17482631.2025.2555228. Fulltekst i vitenarkiv Vis sammendrag

  Background: Brain metastases are a serious complication of advanced cancer, often impairing patients’ neurological function, quality of life, well-being, and prognosis. They also place a heavy emotional burden on family members. Coping strategies play a crucial role in reducing stress, supporting emotional well-being, and adapting to these challenges. Gaining insight into how patients and families cope is important for developing person- and family-centred interventions. Aim: To explore similarities and differences in coping strategies between patients with newly diagnosed brain metastases and their family members from diagnosis to four months thereafter. Methods: The study has a qualitative, exploratory, longitudinal design. Between 2019 and 2021, 81 individual interviews were conducted with patients and their family members. Data were analysed using a secondary thematic analysis. Results: The analysis revealed two main themes: Willpower – taking control of the mind, and Reframing life – here-and-now versus long-term plans. While patients exhibited willpower and took control over their minds, focusing on the present moment, family members emphasised reframing life by balancing the immediate needs and information seeking with long-term planning. Conclusions: Patients and family members employ distinct coping strategies. Recognising these differences provides a foundation for tailored, person- and family-centred interventions aimed at improving quality of life.

• Skåre, Terese Solvoll; Lundeby, Tonje; Lund, Jo-Åsmund; Hjermstad, Marianne Jensen & Midtbust, May Helen (2025). First-time use of electronic patient-reported outcome measures in a cluster randomized trial: a qualitative study. Journal of Patient-Reported Outcomes. 9, s. 1–11. doi: 10.1186/s41687-025-00840-1. Fulltekst i vitenarkiv Vis sammendrag

  Background Although there is clear evidence supporting the beneficial effects of regularly assessing patient-reported outcomes (PROs), the comprehensive integration of patient-reported outcome measures (PROMs) into routine cancer care remains limited. This study aimed to explore the facilitators and barriers encountered by principal investigators (PIs) (oncologists) and study nurses during the implementation of the Eir ePROM within a cluster randomized trial (c-RCT) in cancer outpatient clinics. Additionally, we sought to examine the influence of Eir on the working routines of the participants. Methods Individual semi-structured interviews and a focus group were conducted with nine oncologists and study nurses involved in the implementation of the ePROM tool Eir. Interviews elucidated their experiences of barriers and facilitators when implementing Eir through a cluster randomized trial. Data were analysed according to Framework Analysis, using both an inductive and deductive approach. The Consolidated Framework for Implementation Research (CFIR) was used in the deductive stages of analysis. Results Three overarching themes were identified from the data: (1) Willingness to invest; accepting that new eras come with a cost, (2) Management anchoring; changes start at the top, and (3) Creation of a cohesive framework; fostering collective comprehension. We found a notable disparity between oncologists and nurses in their willingness to invest time and effort in implementing the tool. While participants recognized the need to transform patient consultation methods to benefit from digital symptom management, opinions varied on whether the potential benefits justified the associated cost. Furthermore, the degree of management anchoring at various levels significantly impacted the implementation process. At the local level, it was seen as either a facilitator or a barrier, influencing the outcome of the implementation. Additionally, establishing a cohesive framework was crucial, as this fostered a collective understanding among those involved in the implementation. Conclusions Our study underscores the importance of considering the diverse perspectives of health care professionals and fostering interprofessional collaboration for the successful implementation of ePROMs in healthcare settings. Future research should explore strategies to bridge professional disparities and promote a shared understanding of the value provided by ePROMs.

• Larsen, Berit Hofset; Gerwing, Jennifer; Lundeby, Tonje; Gulbrandsen, Pål & Førde, Reidun (2025). More than an extra set of ears: A video-based analysis exploring the role of companions in routine oncology visits. Journal of psychosocial oncology. ISSN 0734-7332. 43(5), s. 682–703. doi: 10.1080/07347332.2025.2457964. Fulltekst i vitenarkiv Vis sammendrag

  Purpose Patients with advanced cancer commonly bring a companion to medical appointments, often a family member. Despite increasing focus on family involvement, few studies are based on observations of real-life consultations. This study aimed to explore how companions contribute to the information exchange process during advanced cancer outpatient visits. Methods Data were ten videos of routine oncology visits. We identified when and how companions participated using microanalysis of clinical interaction. Findings Companion participation varied greatly. They tended to speak up spontaneously, contributing medical, personal, and contextual information that might otherwise have remained unsaid. They both brought information into the discussion and facilitated information exchanged between the physician and patient. Companions displayed few of their own concerns. Conclusions The findings suggest that companions may be an important resource during oncology visits, not only for the patient, but also for healthcare providers aiming for person-centered care to the individual patient.

• Hjermstad, Marianne Jensen; Pirnat, Aleksandra; Aass, Nina Kathrine; Andersen, Sigve; Astrup, Guro Lindviksmoen & Dajani, Olav [Vis alle 19 forfattere av denne artikkelen] (2024). PALLiative care in ONcology (PALLiON): A cluster-randomised trial investigating the effect of palliative care on the use of anticancer treatment at the end of life. Palliative Medicine. ISSN 0269-2163. 38(2), s. 229–239. doi: 10.1177/02692163231222391. Fulltekst i vitenarkiv Vis sammendrag

  Background: Effects on anticancer therapy following the integration of palliative care and oncology are rarely investigated. Thus, its potential effect is unknown. Aim: To investigate the effects of the complex intervention PALLiON versus usual care on end-of-life anticancer therapy. Design: Cluster-randomised controlled trial (RCT), registered at ClinicalTrials.gov (No. NCT01362816). The complex intervention consisted of a physician education program enhancing theoretical, clinical and communication skills, a patient-centred care pathway and patient symptom reporting prior to all consultations. Primary outcome was overall use, start and cessation of anticancer therapy in the last 3 months before death. Secondary outcomes were patient-reported outcomes. Mixed effects logistic regression models and Cox proportional hazard were used. Setting: A total of 12 Norwegian hospitals (03/2017-02/2021). Participants: Patients ⩾18 years, advanced stage solid tumour, starting last line of anticancer therapy, estimated

• Guldhav, Kristin Vassbotn; Andersen, John Roger; Eldal, Kari; Lundeby, Tonje & Hegland, Pål Andre (2024). Practices for Reporting Scale Structure and Summarizing Scores in Studies Using FAMCARE Scale to Assess Caregiver Satisfaction with Cancer Care: A Scoping Review. Patient Related Outcome Measures. 15, s. 271–286. doi: 10.2147/PROM.S479195. Fulltekst i vitenarkiv Vis sammendrag

  Background: Satisfaction with care is a concept quantified through diverse measurement tools. However, studies have indicated that measuring satisfaction is challenging due to the construct’s multidimensional expression. Thus, obtaining valid results requires careful consideration of the construct’s nature and measurement methods. Purpose: The primary aim of this study was to examine how studies involving cancer caregivers have addressed the dimensionality of the construct when using satisfaction with care as an outcome, and whether this is reflected in the score reporting practices. We chose to investigate this by conducting a scoping review of the measurement tool Family Satisfaction with End-of-Life Care Scale (FAMCARE Scale), where scores can be reported as the mean of overall score, subscale scores and single-item scores. Methods: This scoping review consisted of systematic searches using Medline, CINAHL, Embase, PsycInfo, Cochrane Library, and Epistemonikos. Two researchers used the Rayyan Qatar Computing Research Institute system to perform a blinded screening process. We extracted information on study design, purpose, evaluating of structural validity, variations in the type of scores reported, and justification for choosing the type(s) of scores that were analyzed. Results: Twenty-three studies were included in the review, and their designs and reporting practices of score type varied substantially. Five studies reported analyses to test the scale’s structural validity. Ten studies provided a justification for their choice of reporting method. The most common reporting practice found was using mean of overall scores, present in 20 of the included studies. Twelve studies reported mean of subscale scores, and ten reported single-item mean scores. Conclusion: We found substantial variability in score reporting practices, highlighting the need for a more in-depth understanding and reflection on the multidimensional nature of caregiver satisfaction.

• Scherrens, Anne-Lore; Jacobs, An; Beernaert, Kim; Pardon, Koen; Raemdonck, Eveline & Fallon, Marie [Vis alle 13 forfattere av denne artikkelen] (2024). Integrating patient-centred and tumour-centred cancer care: the EU-MyPath implementation project offers an innovative digital solution with care pathways. Palliative Care & Social Practice. 18. doi: 10.1177/26323524241296143. Fulltekst i vitenarkiv Vis sammendrag

  Cancer is one of the leading causes of mortality, with new cases expected to rise. Medical advances increase cure rates and prolong patient lives, but survivorship involves high symptom burden, loss of function and emotional distress. Improving patient-centred care (PCC) and quality of life throughout the care process is essential. Key to this improvement are systematic use of patient-reported outcome measures (PROMs) and patient-centred care pathways (PCCPs). Despite established benefits, current cancer care focuses on tumour-centred care approaches often neglecting the patient perspective. Evidence-based PCC guidelines fail to be routinely incorporated into clinical practices. The Horizon 2020-funded European MyPath project aims to address these gaps by developing, implementing and evaluating digital PCCPs with PROMs. MyPath will be tailored to enhance the organisational contexts of cancer centres across Europe through the application of implementation science strategies. This paper describes the current state of applying PCC in routine cancer care and presents a forward-looking perspective on how the MyPath project can successfully adopt and implement digital PROMs across countries. A literature search was conducted to provide the state-of-the art.

• Yri, Olav Erich; Astrup, Guro Lindviksmoen; Karlsson, Astrid Telhaug; Helvoirt, Rene van; Hjermstad, Marianne Jensen & Husby, Kristin Moksnes [Vis alle 15 forfattere av denne artikkelen] (2024). Survival and quality of life after first-time diagnosis of brain metastases: a multicenter, prospective, observational study. The Lancet Regional Health - Europe. 49, s. 1–15. doi: 10.1016/j.lanepe.2024.101181. Fulltekst i vitenarkiv Vis sammendrag

  Background: A major concern in anticancer treatment (ACT) of brain metastases (BM) is exposing patients with short expected survival to treatments that negatively impact on quality of life (QoL). Such futile ACT at the end of life is time-consuming and burdensome for patients and their families and entails unnecessary healthcare costs. Refraining from ACT is challenging for both physicians and patients. This study aimed to provide real-life data on survival after BM diagnosis and patient reported outcomes (PROs) after ACT to identify risk factors for futile treatment and to support BM treatment decisions. Methods: This multi-center, prospective, observational study recruited consecutive patients with first-time BM from November 2017 to March 2021. Patients were followed until death or study end (October 1st, 2023). Clinical factors associated with survival were analyzed by the Cox' proportional hazards model. Changes in PROs after BM treatment were described according to Eastern Cooperative Oncology Group (E

• Miranda, Rose; Raemdonck, Eveline; Deliens, Luc; Kaasa, Stein; Zimmermann, Camilla & Rodin, Gary [Vis alle 10 forfattere av denne artikkelen] (2023). Do cancer centres and palliative care wards routinely measure patients’ quality of life? An international cross-sectional survey study. Supportive Care in Cancer. ISSN 0941-4355. 31(8). doi: 10.1007/s00520-023-07964-4. Fulltekst i vitenarkiv Vis sammendrag

  Purpose Routinely assessing quality of life (QoL) of patients with cancer is crucial for improving patient-centred cancer care. However, little is known about whether or how cancer centres assess QoL for clinical practice or for research purposes. Therefore, our study aimed to investigate if QoL data is collected and if so, how and for what purposes. Method We conducted a cross-sectional survey study among 32 cancer centres in Europe and Canada. Centre representatives identified persons who they judged to have sufficient insight into QoL data collections in their wards to complete the survey. Descriptive statistics were used to summarise the information on QoL assessment and documentation. Results There were 20 (62.5%) responding cancer centres. In total, 30 questionnaires were completed, of which 13 were completed for cancer wards and 17 for palliative care wards. We found that 23.1% and 38.5% of the cancer wards routinely assessed QoL among inpatients and outpatients with cancer, respectively, whereas, in palliative care wards, 52.9% assessed QoL for outpatients with cancer and 70.6% for the inpatients. Wide variabilities were observed between the cancer centres in how, how often, when and which instruments they used to assess QoL. Conclusion A sizable proportion of the cancer wards, especially, and palliative care wards apparently does not routinely assess patients’ QoL, and we found wide variabilities between the cancer centres in how they do it. To promote routine assessment of patients’ QoL, we proposed several actions, such as addressing barriers to implementing patient-reported outcome measures through innovative e-health platforms.

• Kreye, G.; Lundeby, Tonje; Latino, N.; Galotti, M. & Kaasa, Stein (2022). ESMO Designated Centres of Integrated Oncology and Palliative Care (ESMO DCs): education, research and programme development survey. ESMO Open. 7(6). doi: 10.1016/j.esmoop.2022.100622. Fulltekst i vitenarkiv Vis sammendrag

  Background The European Society for Medical Oncology (ESMO) Designated Centres (DCs) of Integrated Oncology and Palliative Care is an incentive programme established in 2003 aiming to improve the integration of oncology and palliative care services provided by oncologists and oncology centres worldwide. Currently, the ESMO DCs programme has over 250 centres accredited from 54 countries worldwide, in all six world regions. Materials and methods To evaluate how ESMO can support centres to improve programme development, education and research and vice versa what each single centre can do to improve in these areas, we developed a survey which was shared with all active centres. Two hundred and seven ESMO DCs representing 44 countries were invited to participate. We used content analysis to identify response categories using a stepwise approach. After reviewing and coding all responses to each question separately, they were placed into categories, counted and labelled. Results Of the 207 centres that were invited to participate, 146 centres started the survey, representing 43 countries. Five overarching topics were identified. They included (i) joint events and educational activities; (ii) sharing of materials and defining common standards; (iii) sharing of experiences, scientific knowledge and expertise; (iv) research collaboration; and (v) ESMO support. Respondents were willing to support the ESMO DC community group in all topics and were also asking ESMO to support their centres in these issues in the future. Conclusion The study showed that the ESMO DCs are willing to provide support to improve education, research and programme development. They are also eager to contribute and collaborate amongst each other, but also request ESMO to offer advice and help to improve these issues in the DCs. In the future, facilitation of joint research projects and development of arenas to share experiences, educational and programme developments, and other resources are to be explored and could be offered to the DCs worldwide.

• Larsen, Berit Hofset; Lundeby, Tonje; Gulbrandsen, Pål; Førde, Reidun & Gerwing, Jennifer (2022). Physicians’ responses to advanced cancer patients’ existential concerns: A video-based analysis. Patient Education and Counseling. ISSN 0738-3991. 105(10), s. 3062–3070. doi: 10.1016/j.pec.2022.06.007. Fulltekst i vitenarkiv Vis sammendrag

  Objective In a recent study, we explored what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation and how they communicate such concerns. The current study builds on these results, investigating how the physicians responded to those concerns. Methods We analyzed video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue. Results We identified 185 immediate physician-responses to the 127 patient existential utterances we had previously identified. The responses demonstrated three approaches: giving the patient control over the content, providing support, and taking control over the content. The latter was by far the most common, through which the physicians habitually kept the discussion around biomedical aspects and rarely pursued the patients’ existential concerns. Conclusions Although the physicians, to some extent, allowed the patients to talk freely about their concerns, they systematically failed to acknowledge and address the patients’ existential concerns. Practice implications Physicians should be attentive to their possible habit of steering the agenda towards biomedical topics, hence, avoiding patients’ existential concerns. Initiatives cultivating behavior enhancing person-centered and existential communication should be implemented in clinical practice and medical training.

• Lundeby, Tonje; Finset, Arnstein; Kaasa, Stein; Wester, Torunn Elin; Hjermstad, Marianne Jensen & Dajani, Olav [Vis alle 8 forfattere av denne artikkelen] (2022). A complex communication skills training program for physicians providing advanced cancer care–content development and barriers and solutions for implementation. Journal of Communication in Healthcare. ISSN 1753-8068. doi: 10.1080/17538068.2022.2039468. Fulltekst i vitenarkiv Vis sammendrag

  Background : Early integration of oncology and patient-centered palliative care is the recommended clinical practice model for patients with advanced cancer. General and specific communication skills are necessary to achieve integrated patient-centered care, but require organized training to be adequately mastered. Challenges and barriers on several levels, i.e. organizational, professional and individual may, however, hamper implementation. The development, implementation, and evaluation of such an educational program focusing on communication skills contain many steps, considerations and lessons learned, which are described in this article. Methods : A multi-professional faculty developed, implemented, and evaluated an educational program through a 5-step approach. The program was part of a Norwegian cluster-randomized controlled trial aiming to test the effect of early integration of oncology and palliative care for patients with advanced cancer. Results : The result is the PALLiON educational program; a multi-faceted, evidence-based, and learner-centered program with a specific focus on physicians’ communication skills. Four modules were developed: lectures, discussion groups, skills training, and coaching. These were implemented at the six intervention hospitals using different teaching strategies. Evaluation in a subgroup of participants showed a positive appraisal of the group discussions and skills training.

• Larsen, Berit Hofset; Lundeby, Tonje; Gerwing, Jennifer; Gulbrandsen, Pål & Førde, Reidun (2021). “Eh – What type of cells are these – flourishing in the liver?” Cancer patients’ disclosure of existential concerns in routine hospital consultations. Patient Education and Counseling. ISSN 0738-3991. doi: 10.1016/j.pec.2021.11.010. Fulltekst i vitenarkiv Vis sammendrag

  Objective Advanced cancer poses a threat to all aspects of being, potentially causing existential suffering. We explore what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation, and how they communicate such concerns. Methods We analyzed thirteen video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue. Results Nearly all patients disclosed how the illness experience included losses and threats of loss that are strongly associated with existential suffering, displaying uncertainty about future and insecurity about self and coping. Patients usually disclosed existential concerns uninvited, but they did so indirectly and subtly, typically hiding concerns in biomedical terms or conveying them with hesitation and very little emotion. Conclusions Patients may have existential concerns they want to address, but they may be uncertain whether these are issues they can discuss with the physician. Practice implications Health professionals should be attentive to underlying existential messages embedded in the patient’s questions and concerns. Acknowledging these existential concerns provides an opportunity to briefly explore the patient’s needs and may direct how the physician tailors information and support to promote coping, autonomy, and existential health.

• Hjermstad, Marianne Jensen; Hamfjord, Julian; Aass, Nina Kathrine; Dajani, Olav; Lundeby, Tonje & Wester, Torunn Elin [Vis alle 7 forfattere av denne artikkelen] (2021). Using process indicators to monitor documentation of patient-centred variables in an integrated oncology and palliative care pathway—results from a cluster randomized trial. Cancers. 13(9), s. 1–16. doi: 10.3390/cancers13092194. Fulltekst i vitenarkiv Vis sammendrag

  Background. Despite robust evidence from randomized controlled trials (RCTs) demonstrating clinical and patient-reported benefits of integrated oncology and palliative care, the tumour-centred focus is predominant. This single–centre process evaluation monitors documentation of required patient-centred variables during an RCT. Methods. Performance status, patient self-reported symptoms, weight and summaries to general practitioners were assessed from June 2017 to July 2020 in three consultation types: first oncological after study inclusion and palliative and oncological consultations during chemotherapy. Descriptive statistics were used to monitor if the pre-defined program fulfilment of ≥85% documentation was reached. Results. 435 consultations were monitored in 76 patients; 60.5% males, 86.8% with GI cancers; 76 (17.5%) were from the first oncological consultations, 87 (20.0%) and 272 (62.5%) from palliative or subsequent oncological consultations. Program fulfilment differed across consultation types with 94.8% in the palliative consultations (83.3–100%), relative to 65.8% (62.5–75.0%) and 69.2% (57.0–84.3%) for first and subsequent oncological consultations over time, respectively. Use of self-reported symptoms was consistently lower in the oncological consultations. Conclusions. The documentation level of required core variables was not satisfactory, notwithstanding their high clinical relevance and continuous reminders during study. Pre-trial optimization strategies are paramount to promote integration and reduce professional and personal barriers towards a more patient-centred focus.

• Torper, Jorun; Ansteinsson, Vibeke & Lundeby, Tonje (2019). Moving the Four Habits Model Into Dentistry. Development of a Dental Consultation Model: Do Dentists Need an Additional Habit? European journal of dental education. ISSN 1396-5883. 23(2), s. 220–229. doi: 10.1111/eje.12421. Fulltekst i vitenarkiv
• Kaasa, Stein; Loge, Jon Håvard; Aapro, Matti S.; Albreht, Tit; Anderson, Rebecca & Bruera, Eduardo [Vis alle 30 forfattere av denne artikkelen] (2018). Integration of oncology and palliative care: a Lancet Oncology Commission. The Lancet Oncology. ISSN 1470-2045. 19(11), s. e588–e653. doi: 10.1016/S1470-2045(18)30415-7. Fulltekst i vitenarkiv Vis sammendrag

  Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

• Kaasa, Stein; Knudsen, Anne Kari; Lundeby, Tonje & Loge, Jon Håvard (2017). Integraton between oncology and palliatve care: A plan for the next decade? Tumori (Milano). ISSN 0300-8916. 103(1), s. 1–8. doi: 10.5301/tj.5000602. Fulltekst i vitenarkiv Vis sammendrag

  With the groundbreaking works of the three Milan professors, i.e. Bonadonna, Veronesi, and Ventafridda, in the 1980’s as the starting point, this article aims to shed light on the potential benefits of a closer and more formal integration between oncology and palliative care. More specifically we will address why integration is needed, how to do it, and what are the potential benefits to the patients, the families and the society. The costs for cancer care are increasing rapidly. Especially during the last year of life, some treatments are futile and expensive without proven benefit for the patients in terms of prolonged survival with adequate quality of life (QoL). The latest WHO definition of palliative care supports an “upstream” introduction of palliative care. More recent studies indicate that such an early integration has the potential to improve the patients’ QoL and reduce their symptom burden. Successful integration presupposes formal structures and explicit obligations on how and when to integrate. The Norwegian model for palliative care is presented. It covers the range of oncological and palliative services from community health care via the local hospital to the tertiary hospital and rests on standardised care pathway as the key instrument to promote integration. Our present state of knowledge indicates that integration does not shorten life, perhaps even the opposite. Futile oncological treatment can be reduced and the QoL of patients and carers improved. We need more evidence on the potential effect upon costs, but present data indicate that integration does not increase them.

• Lundeby, Tonje; Gulbrandsen, Pål & Finset, Arnstein (2015). The Expanded Four Habits Model-A teachable consultation model for encounters with patients in emotional distress. Patient Education and Counseling. ISSN 0738-3991. 98(5), s. 598–603. doi: 10.1016/j.pec.2015.01.015. Fulltekst i vitenarkiv
• Stensrud, Tonje Lauritzen; Gulbrandsen, Pål; Mjaaland, Trond Arne; Skretting, Sidsel & Finset, Arnstein (2014). Improving communication in general practice when mental health issues appear: Piloting a set of six evidence-based skills. Patient Education and Counseling. ISSN 0738-3991. 95(1), s. 69–75. doi: 10.1016/j.pec.2013.12.005. Fulltekst i vitenarkiv
• Kristjansdottir, Olöf Birna; Fors, Egil Andreas; Eide, Erlend; Finset, Arnstein; Stensrud, Tonje Lauritzen & Dulmen, Sandra van [Vis alle 8 forfattere av denne artikkelen] (2013). A smartphone-based intervention with diaries and therapist-feedback to reduce catastrophizing and increase functioning in women with chronic widespread pain. Part 2. 11-month results of a randomized controlled trial. Journal of Medical Internet Research (JMIR). ISSN 1439-4456. 15(3), s. 152–170. doi: 10.2196/jmir.2442. Fulltekst i vitenarkiv Vis sammendrag

  Background: Internet-based interventions are increasingly used to support self-management of individuals with chronic illnesses. Web-based interventions may also be effective in enhancing self-management for individuals with chronic pain, but little is known about long-term effects. Research on Web-based interventions to support self-management following participation in pain management programs is limited. Objective: The aim is to examine the long-term effects of a 4-week smartphone-intervention with diaries and therapist-written feedback following an inpatient chronic pain rehabilitation program, previously found to be effective at short-term and 5-month follow-ups. Methods: 140 women with chronic widespread pain, participating in a 4-week inpatient rehabilitation program, were randomized into two groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of one face-to-face individual session and 4 weeks of written communication via a smartphone, consisting of three diaries daily to elicit pain-related thoughts, feelings, and activities, as well as daily personalized written feedback based on cognitive behavioral principles from a therapist. Both groups were given access to an informational website to promote constructive self-management. Outcomes were measured with self-reported paper-and-pencil format questionnaires with catastrophizing as the primary outcome measure. Secondary outcomes included daily functioning and symptom levels, acceptance of pain, and emotional distress.

• Kristjansdottir, Olöf Birna; Fors, Egil Andreas; Eide, Erlend; Finset, Arnstein; Stensrud, Tonje Lauritzen & Dulmen, Sandra van [Vis alle 8 forfattere av denne artikkelen] (2013). A smartphone-based intervention with diaries and therapist-feedback to reduce catastrophizing and increase functioning in women with chronic widespread pain: Randomized controlled trial. Journal of Medical Internet Research (JMIR). ISSN 1439-4456. 15(1), s. 41–62. doi: 10.2196/jmir.2249. Fulltekst i vitenarkiv Vis sammendrag

  Background: Internet-based interventions using cognitive behavioral approaches can be effective in promoting self-management of chronic pain conditions. Web-based programs delivered via smartphones are increasingly used to support the self-management of various health disorders, but research on smartphone interventions for persons with chronic pain is limited. Objective: The aim of this trial was to study the efficacy of a 4-week smartphone-delivered intervention with written diaries and therapist feedback following an inpatient chronic pain rehabilitation program. Methods: A total of 140 women with chronic widespread pain who participated in a 4-week inpatient rehabilitation program were randomized into 2 groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of 1 face-to-face session and 4 weeks of written communication via a smartphone. Participants received 3 smartphone diary entries daily to support their awareness of and reflection on pain-related thoughts, feelings, and activities. The registered diaries were immediately available to a therapist who submitted personalized written feedback daily based on cognitive behavioral principles. Both groups were given access to a noninteractive website after discharge to promote constructive self-management. Outcomes were measured with self-reported questionnaires. The primary outcome measure of catastrophizing was determined using the pain catastrophizing scale (score range 0-52). Secondary outcomes included acceptance of pain, emotional distress, functioning, and symptom levels. Results: Of the 140 participants, 112 completed the study: 48 in the intervention group and 64 in the control group. Immediately after the intervention period, the intervention group reported less catastrophizing (mean 9.20, SD 5.85) than the control group (mean 15.71, SD 9.11, P<.001), yielding a large effect size (Cohen’s d=0.87) for study completers. At 5-month follow-up, the between-group effect sizes remained moderate for catastrophizing (Cohen’s d=0.74, P=.003), acceptance of pain (Cohen’s d=0.54, P=.02), and functioning and symptom levels (Cohen’s d=0.75, P=.001). Conclusions: The results suggest that a smartphone-delivered intervention with diaries and personalized feedback can reduce catastrophizing and prevent increases in functional impairment and symptom levels in women with chronic widespread pain following inpatient rehabilitation. Trial Registration: Clinicaltrials.gov NCT01236209; http://www.clinicaltrials.gov/ct2/show/NCT01236209 (Archived by WebCite at http://www.webcitation.org/6DUejLpPY)

• Finset, Arnstein; Stensrud, Tonje Lauritzen; Holt, Erik; Verheul, William & Bensing, Jozien (2011). Electrodermal activity in response to empathic statements in clinical interviews with fibromyalgia patients. Patient Education and Counseling. ISSN 0738-3991. 82(3), s. 355–360. doi: 10.1016/j.pec.2010.12.029. Fulltekst i vitenarkiv
• Verheul, William; Finset, Arnstein; Holt, Erik; Stensrud, Tonje Lauritzen & Bensing, Jozien (2011). Is pain patients' psychophysiological arousal while watching their videotaped medical interview similar to their arousal during participation in this medical interview? International Journal of Psychophysiology. ISSN 0167-8760. 79(2), s. 305–310. doi: 10.1016/j.ijpsycho.2010.11.007. Fulltekst i vitenarkiv
• Stensrud, Tonje Lauritzen & Carlsen, Kai-Håkon (2008). Can one single test protocol for provoking exercise-induced bronchoconstriction also be used for assessing aerobic capacity? Clinical Respiratory Journal. ISSN 1752-6981. 2, s. 47–53. doi: 10.1111/j.1752-699X.2007.00030.x. Fulltekst i vitenarkiv

Se alle arbeider i NVA

• Lundereng, Elias David; Dajani, Olav; Westgaard, Arne; Hjermstad, Marianne Jensen; Fallon, Marie & Ausen, Dag [Vis alle 10 forfattere av denne artikkelen] (2026). A Mixed-Methods Study on the Co-design and Pilot Testing of a Digital Patient-Centered Follow-up Tool (MyPath) in Pancreatic Cancer. Palliative Medicine. ISSN 0269-2163. 40(5), s. 873–874. doi: 10.1177/02692163261433418. Fulltekst i vitenarkiv Vis sammendrag

  Digital tools using electronic Patient-Reported OutcomeMeasures (ePROMs) have shown promise in making cancer care more patient-centered. Yet, the feasibility of this in real-world settings, in patients with high symptom burden and poor prognosis (e.g. pancreatic cancer or cholangiocarcinoma), are limited. The aim of this pilot study was to design and assess the feasibility of a digital solution integrating ePROMs (termed MyPath), in a real-world, out-patient cancer setting. A four-phased mixed-methods approach was employed to evaluate uptake, sustainability, and support needs using a digital Edmonton Symptom Assessment Score (d-ESAS). Eligible participants with pancreatic cancer or cholangiocarcinoma receiving anti-cancer therapy were consecutively sampled. This pilot study demonstrated that ePROMs implementation is feasible in real-world oncology settings with fragile, symptom-burdened patients. Key considerations for the large-scale MyPath implementation include establishing support-systems to facilitate uptake, integrating ePROMS into clinical workflows, and co-creating strategies for meaningful and sustainable use with patients and clinicians.

• Lundereng, Elias David; Guldhav, Kristin Vassbotn; Lund, Jo-Åsmund; Paulsen, Ørnulf; Dajani, Olav & Hjermstad, Marianne Jensen [Vis alle 8 forfattere av denne artikkelen] (2025). 02. Bridging tumour- and patient-centered cancer care: A qualitative meta-synthesis of stakeholder perspectives in digital implementation. Current opinion in supportive and palliative care. ISSN 1751-4258. 19(4), s. 292–299. doi: 10.1097/SPC.0000000000000775. Fulltekst i vitenarkiv
• Lillekroken, Daniela; Bye, Asta; Halvorsrud, Liv Torill; Yri, Olav Erich; Wester, Torunn Elin & Hjermstad, Marianne Jensen [Vis alle 9 forfattere av denne artikkelen] (2024). Living with brain metastases - A qualitative study about patient-and family members' coping strategies. Fulltekst i vitenarkiv
• Larsen, Berit Hofset; Lundeby, Tonje; Gerwing, Jennifer; Gulbrandsen, Pål & Førde, Reidun (2023). Alvorlig syke kreftpasienter kan kamuflere sine eksistensielle bekymringer. Sykepleien Forskning. ISSN 1890-2936. doi: 10.4220/Sykepleiens.2023.93333. Fulltekst i vitenarkiv
• Hjermstad, Marianne Jensen; Pirnat, Aleksandra; Aass, Nina Kathrine; Andersen, Sigve; Astrup, Guro Lindviksmoen & Dajani, Olav [Vis alle 19 forfattere av denne artikkelen] (2023). 1592MO Anticancer therapy at the end-of-life: A cluster-randomized trial. Annals of Oncology. ISSN 0923-7534. 34, s. S886–S886. doi: 10.1016/j.annonc.2023.09.789. Fulltekst i vitenarkiv
• Nilsen, Lars Broch; Kaasa, Stein & Lundeby, Tonje (2023). OUS-forskere leder EU-prosjekt på pasientfokusert behandling - presenterte fremgangen på ESMO. [Internet]. Health Talk. Fulltekst i vitenarkiv
• Lundeby, Tonje; Wester, Torunn Elin; Aass, Nina Kathrine; Hjermstad, Marianne Jensen; Yri, Olav Erich & Bye, Asta [Vis alle 7 forfattere av denne artikkelen] (2022). Living with brain metastases: A longitudinal qualitative study of patient experiences from time of diagnosis. Fulltekst i vitenarkiv
• Stokke, Kjersti; Lundeby, Tonje; Røhrl, Kari; Høy, Elin & Stein, Kaasa (2022). We can improve implementation of complex interventions - development of an tailored implementation guide. Fulltekst i vitenarkiv
• Lundereng, Elias David; Hjermstad, Marianne Jensen; Aass, Nina Kathrine; Lundeby, Tonje; Fallon, Marie & Velikova, Galina [Vis alle 9 forfattere av denne artikkelen] (2022). Developing Innovative Digital Patient Centered Care Pathways for Cancer Patients using Agile Design: A pre pilot study. Fulltekst i vitenarkiv
• Stokke, Kjersti; Røhrl, Kari & Lundeby, Tonje (2022). How can we improve implementation of complex interventions- development of an tailored implementation guide. Fulltekst i vitenarkiv
• Astrup, Guro Lindviksmoen; Kaasa, Stein; Aass, Nina Kathrine; Hjermstad, Marianne Jensen; Lundeby, Tonje & Helvoirt, Rene van [Vis alle 9 forfattere av denne artikkelen] (2021). Patient-reported outcomes in cancer patients newly diagnosed with brain metastases. Annals of Oncology. ISSN 0923-7534. 32, s. S1076–S1076. doi: 10.1016/j.annonc.2021.08.206. Fulltekst i vitenarkiv
• Hjermstad, Marianne Jensen; Aass, Nina Kathrine; Andersen, Sigve; Brunelli, Cinzia; Dajani, Olav & Ahmed, Herish [Vis alle 20 forfattere av denne artikkelen] (2020). PALLiON - PALLiative care Integrated in ONcology: Study protocol for a Norwegian national cluster-randomized control trial with a complex intervention of early integration of palliative care. Trials. 21:303, s. 1–17. doi: 10.1186/s13063-020-4224-4. Fulltekst i vitenarkiv Vis sammendrag

  Background - Several publications have addressed the need for a systematic integration of oncological care focused on the tumor and palliative care (PC) focused on the patient with cancer. The exponential increase in anticancer treatments and the high number of patients living longer with advanced disease have accentuated this. Internationally, there is now a persuasive argument that introducing PC early during anticancer treatment in patients with advanced disease has beneficial effects on symptoms, psychological distress, and survival. Methods - This is a national cluster-randomized trial (C-RCT) in 12 Norwegian hospitals. The trial investigates effects of early, systematic integration of oncology and specialized PC in patients with advanced cancer in six intervention hospitals compared with conventional care in six. Hospitals are stratified on the size of local catchment areas before randomization. In the intervention hospitals, a three-part complex intervention will be implemented. The backbone of the intervention is the development and implementation of patient-centered care pathways that contain early, compulsory referral to PC and regular and systematic registrations of symptoms. An educational program must be completed before patient inclusion. A total of 680 patients with advanced cancer and one caregiver per patient are included when patients come for start of last line of chemotherapy, defined according to national treatment guidelines. Data registration, clinical variables, and patient- and caregiver-reported outcomes take place every 2 months for 1 year or until death. The primary outcome is use of chemotherapy in the last 3 months of life by comparing the proportion of patients who receive this in the intervention and control groups. Primary outcome is use of chemotherapy in the last 3 months before death, i.e. number of patients. Secondary outcomes are initiation, discontinuation and number of cycles, last 3 months of life, administration of other medical interventions in the last month of life, symptom burden, quality of life (QoL), satisfaction with information and follow-up, and caregiver health, QoL, and satisfaction with care. Discussion - Results from this C-RCT will be used to raise the awareness about the positive outcomes of early provision of specialized palliative care using pathways for patients with advanced cancer receiving medical anticancer treatment. The long-term clinical objective is to integrate these patient-centered pathways in Norwegian cancer care. The specific focus on the patient and family and the organization of a predictable care trajectory is consistent with current Norwegian strategies for cancer care.

• Hjermstad, Marianne Jensen; Aass, Nina Kathrine; Grotmol, Kjersti Støen; Kaasa, Stein; Lundeby, Tonje & Seljelid, Berit [Vis alle 8 forfattere av denne artikkelen] (2017). Integration of oncology and palliative care - findings from the PALLiON pre-study survey. Fulltekst i vitenarkiv
• Kaasa, Stein; Knudsen, Anne Kari; Lundeby, Tonje & Loge, Jon Håvard (2017). Author's reply to: Integration between oncology and palliative care: A plan for the next decade? Tumori (Milano). ISSN 0300-8916. 103(3), s. e24–e24. doi: 10.5301/tj.5000631. Fulltekst i vitenarkiv
• Torper, Jorun; Ansteinsson, Vibeke & Lundeby, Tonje (2017). The four habits model for dental visits (4hd). Fulltekst i vitenarkiv
• Lundeby, Tonje; Jacobsen, Henrik Børsting; Lundeby, Paul Andreas & Loge, Jon Håvard (2017). Emotions in communication skills training - experiences from general practice to Porsche maintenance. 100(11), s. 2141–2143. doi: 10.1016/j.pec.2017.06.006. Fulltekst i vitenarkiv
• Kristjansdottir, Olöf Birna; Fors, Egil Andreas; Eide, Erlend; Finset, Arnstein; Stensrud, Tonje Lauritzen & Dulmen, Sandra van [Vis alle 8 forfattere av denne artikkelen] (2012). The effect of web-based diaries and situational feedback on catastrophizing in women with chronic widespread pain. Fulltekst i vitenarkiv
• Kristjánsdóttir, Ólöf Birna; Fors, Egil Andreas; Finset, Arnstein; Stensrud, Tonje Lauritzen; Dulmen, Sandra van & Eide, Erlend [Vis alle 8 forfattere av denne artikkelen] (2011). Verdibasert smertemestring - resultater fra en randomisert studie. Fulltekst i vitenarkiv
• Kristjánsdóttir, Ólöf Birna; Fors, Egil Andreas; Stensrud, Tonje Lauritzen; Finset, Arnstein; Wigers, S. Hørven & Eide, Erlend [Vis alle 8 forfattere av denne artikkelen] (2011). Oppfølging via smartmobil for kvinner med fibromyalgi/kroniske muskelsmerter etter rehabiliteringsprogram på Jeløy Kurbad. Fulltekst i vitenarkiv
• Eide, Hilde; Kristjánsdóttir, Ólöf Birna; Eide, Erlend; Finset, Arnstein; Fors, Egil Andreas & Stensrud, Tonje Lauritzen [Vis alle 8 forfattere av denne artikkelen] (2010). Webbasert veiledning i smertemestring – en randomisert kontrollert studie. Fulltekst i vitenarkiv
• Brkic, Alen; Lundeby, Tonje; Guren, Marianne; Kaasa, Stein; Delmas, Dominique & Brunelli, Cinzia [Vis alle 8 forfattere av denne artikkelen] (2024). Collaborative Network Report. European Commission. doi: https:/ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e50738a363&appId=PPGMS. Fulltekst i vitenarkiv
• Brkic, Alen; Lundeby, Tonje; Foss, Line; Guren, Marianne; Kaasa, Stein & Delmas, Dominique [Vis alle 10 forfattere av denne artikkelen] (2024). Iterative scoping rounds and Implementation guidelines. European Commission. doi: https:/ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e516b07e39&appId=PPGMS. Fulltekst i vitenarkiv
• Førde, Reidun; Gulbrandsen, Pål; Lundeby, Tonje & Larsen, Berit Hofset (2023). Patient autonomy in advanced cancer. A video-based qualitative study of clinical communication in routine hospital visits. Universitetet i Oslo. ISSN 9788234802898. Fulltekst i vitenarkiv Vis sammendrag

  This thesis contributes to the discussion about how to enhance patient autonomy in the case of advanced cancer posing an existential threat to all aspects of being. The aim was to explore 1) what existential concerns patients with advanced cancer disclose during routine hospital visits and how they communicate such concerns, 2) how physicians respond to patients’ existential concerns, and 3) how next-of-kin accompanying the patient contribute to the information exchange. We employed a qualitative research design, studying video-recorded routine outpatient hospital visits involving patients with advanced cancer, using analytic principles from “microanalysis of clinical interaction”. Most patients disclosed existential concerns during the consultation. However, existential concerns were hesitant, subtle, and indirect, typically hidden in biomedical terms. The physicians habitually responded to these concerns by keeping the agenda around biomedical aspects, resulting in that the existential issues remained unaddressed. In most consultations, the patient was accompanied by a next-of-kin, whom the physicians mostly related to as a “supporter on the sidelines” rather than addressing the couple as a team. When claiming the floor, next-of-kin contributed to securing information that would otherwise have been missing. Next-of-kin provided personal and contextual information that can help the physician when aiming to tailor information and care to the individual patient. The thesis points to a potential existential neglect in the physician and in the medical culture. It argues that a narrow focus on patient choice and decision-making may be inadequate, as it does not consider that persons are vulnerable, dependent, and relational. Insights from this thesis can inform the discussion about how physicians can play a role in attending to existential concerns and restoring autonomy in collaboration with the patient, next-of-kin, and the interdisciplinary team.

Se alle arbeider i NVA