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Background Patient and public involvement (PPI) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research. Objective To describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations. Methods A search was conducted on PubMed, CINAHL and PsycINFO for literature published from December 2006 to April 2017. Original research studies describing the involvement of cancer patients, stakeholders and carers as active partners at any stage of the research process were included. Results Twenty‐seven studies were included, the majority reporting PPI at the early stages of research, that is, during the definition and prioritization of research topics and the development of recruitment strategies. Few studies reported PPI at later stages and across the research process. Challenges and recommendations were only briefly described, and critical reflection on the PPI process was lacking. Conclusion PPI needs to be integrated more broadly in the cancer research process. The quality of reporting PPI should be strengthened through greater critical reflections including both positive and negative experiences of the PPI process. This will contribute to the further development of PPI and its potential in cancer research.

Background Multiple myeloma is a cancer in the bone marrow causing bone destruction. Patients experience various symptoms related to the disease and/or treatment, such as pain and fatigue, leading to poorer quality of life. The symptom burden might affect physical function and physical activity levels, posing a risk of physical deterioration. The aim was to investigate whether physical function in newly diagnosed patients with multiple myeloma differs from the reference values of the normal population and other cancer patients. Methods The study is a cross sectional descriptive analysis of a prospective cohort of 100 patients newly diagnosed with multiple myeloma. Four physical function tests were carried out; Six-Minute-Walk-Test, Sit-to-Stand-Test, grip strength and knee extension strength. Age and gender specific results of physical function from the multiple myeloma population were compared to normative data and to data from other cancer populations. Results Of the 100 patients included, 73% had bone disease and 55% received pain relieving medicine. Mean age was 67.7 years (SD 10.3). Patients with multiple myeloma had significantly poorer physical function compared to normative data, both regarding aerobic capacity and muscle strength, although not grip strength. No differences in physical function were found between patients with multiple myeloma and other cancer populations. Conclusions Physical function in newly diagnosed Danish patients with multiple myeloma is lower than in the normal population. Exercise intervention studies are warranted to explore the value of physical exercise on physical function. Trial registration ClinicalTrials.gov, ID NCT02439112 , registered 8 May 2015.

Background Families of children and adolescents with cancer strive to maintain routines and normalcy during the child’s treatment trajectory that requires frequent hospital visits. Intravenous chemotherapy at home can reduce time spent on the frequent hospital visits and mitigate disruption in daily life. Studies on home chemotherapy for children and adolescents with cancer are limited, as is knowledge of family and health care professionals’ needs, and knowledge required to inform adaptation or replication of interventions in other settings. The aim of this study was to develop and describe an evidence-based home chemotherapy intervention that is feasible and safe for children and adolescents and suitable for future feasibility testing. Methods The Medical Research Council’s guidance for developing complex interventions in health care and the framework of action developed by O’Cathain et al. was used as theoretical frameworks to structure the development process. A literature search, an ethnographic study, and interviews with clinical nurse specialists from adult cancer departments formed the evidence base. Educational learning theory to support and understand the intervention was identified. Stakeholder perspectives were explored in workshops with health care professionals and parent-adolescent interviews. Reporting was qualified using the GUIDED checklist. Results A stepwise educational program to teach parents how to administer low-dose chemotherapy (Ara-C) to their child at home and a simple and safe administration procedure were developed. Key uncertainties were identified, including barriers and facilitators impacting future testing, evaluation, and implementation. Causal assumptions and reasoning for how the intervention leads to short-term outcomes and long-term impact were clarified in a logic model. Conclusions The iterative and flexible framework allowed for integration of existing evidence and new data and was successfully applied to the development process. The detailed report on the development process of the home chemotherapy intervention can enhance adaptation or replication of the intervention to other settings and thereby mitigate family disruption and stress of frequent hospital visits for these treatments. The study has informed the next phase of the research project that aims to test the home chemotherapy intervention in a prospective single-arm feasibility study. Trial registration ClinicalTrials.gov ID: NCT05372536.

IntroductionTo support the implementation of advance care planning and serious illness conversations in haematology, a previously developed conversation intervention titled ‘Advance Consultations Concerning your Life and Treatment’ (ACT) was found feasible. This study aims to investigate the effect of ACT on the quality of end-of-life care in patients with haematological malignancy and their informal caregivers.Methods and analysisThe study is a nationwide 2-arm cluster randomised trial randomising 40 physician–nurse clusters across seven haematological departments in Denmark to provide standard care or ACT intervention. A total of 400 patients with haematological malignancies and their informal caregivers will be included. The ACT intervention includes an ACT conversation that centres on discussing the patient’s prognosis, worries, hopes and preferences for future treatment. The intervention is supported by clinician training and supervision, preparatory materials for patients and informal caregivers, and system changes including dedicated ACT-conversation timeslots and templates for documentation in medical records.This study includes two primary outcomes: (1) the proportion of patients receiving chemotherapy within the last 30 days of death and (2) patients’ and informal caregivers’ symptoms of anxiety (General Anxiety Disorder-7) at 3 6, 9, 12 and 18 months follow-up. Mixed effects models accounting for clusters will be used.Ethics and disseminationThe Declaration of Helsinki and the European GDPR regulations as practised in Denmark are followed through all aspects of the study. Findings will be made available to the participants, patient organisations, funding bodies, healthcare professionals and researchers at national and international conferences and through publication in peer-reviewed international journals.Registration detailsThe study is registered at ClinicalTrials.gov (NCT05444348). The Regional Ethics Committee of the Capital Region of Denmark (record no: 21067634) has decided that approval is not necessary as per Danish legislation. Study approval has been obtained from The Capital Region of Denmark Data Protection Agency (record no: P-2022-93).Trial registration numberNCT05444348.

Purpose The quality of patient-reported outcome (PRO) data can be compromised by non-response (NR) to scheduled questionnaires, particularly if reasons for NR are related to health problems, which may lead to unintended bias. The aim was to investigate whether electronic reminders and real-time monitoring improve PRO completion rate. Methods The population-based study “Quality of life in Danish multiple myeloma patients” is a longitudinal, multicentre study with consecutive inclusion of treatment-demanding newly diagnosed or relapsed patients with multiple myeloma. Education of study nurses in the avoidance of NR, electronic reminders, 7-day response windows and real-time monitoring of NR were integrated in the study. Patients complete PRO assessments at study entry and at 12 follow-up time points using electronic or paper questionnaires. The effect of the electronic reminders and real-time monitoring were investigated by comparison of proportions of completed questionnaires before and after each intervention. Results The first 271 included patients were analysed; of those, 249 (85%) chose electronic questionnaires. Eighty-four percent of the 1441 scheduled PRO assessments were completed within the 7-day response window and 11% after real-time monitoring, achieving a final PRO completion rate of 95%. A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring. Conclusions Electronic reminders and real-time monitoring contributed to a very high completion rate in the study. To increase the quality of PRO data, we propose integrating these strategies in PRO studies, however highlighting that an increase in staff resources is required for implementation.

Exploring how patients with acute and/or chronic illnesses experience symptoms. Using a phenomenological approach, interviews were conducted with patients to gain insights into their lived experiences and the meanings they attribute to symptoms. Phenomenological concepts of lifeworld, body and embodiment, intentionality, and existential anxiety provide lenses for examining the realities of patients' experiences. Three central themes emerged from the Ricoeur inspired analysis: Perception of an altered body presence, which highlights how illness transforms the perception of the body from a \"silent\" part of the self to an intrusive presence; Symptoms as a threat to existence, illuminating how symptoms confront patients with vulnerability, mortality, and existential uncertainty; and Loss and reclaiming of control, describing the ongoing struggle patients face between feelings of helplessness and efforts to regain autonomy in daily life.Symptoms are not merely indicators of illness but are intertwined with patients' identities and their sense of meaning in life. Insights emphasize the importance of addressing both the biological and existential dimensions of symptoms. Face-to-face clinical encounters offer a shared opportunity to create reflective spacesValidating coping strategies and supporting patients in reclaiming control, clinicians can nurture resilience, dignity, and a comprehensive approach to symptom (self)management.

IntroductionA cancer diagnosis not only profoundly impacts individuals but also the very core of their families, reshaping their lives in many ways. However, there is a lack of focus on the well-being and health of the entire family across adult cancer research. This is concerning given that one-third of the Danish population will get a cancer diagnosis before the age of 75, suggesting that many Danes will become caregivers during their lifetime. In addition, identifying vulnerable families is challenging, and the determinant factors for their vulnerability are unknown.AimsThe principal aim of this study is to investigate family health during cancer treatment. This will be done by gathering information on various parameters such as perceived support, quality of life and self-efficacy in patients with cancer and families across the cancer trajectory. Additionally, the study seeks to pinpoint particularly vulnerable families and investigate contributing factors to their vulnerability.Methods and analysisThis mixed-methods study follows a sequential explanatory design, combining patient-reported outcomes in a longitudinal, prospective multicentre survey with interviews conducted with a nested sampling of the participants from the survey. A total of 240 patients diagnosed with prostate-, breast-, gastrointestinal- and lymphoma cancer, and designated adult family caregivers will be recruited from six different sites for the survey. Variables such as family health, needs and perceived support, quality of life, self-efficacy, depression, stress and resilience will be explored. Survey data will be collected at baseline, 3, 6, 12 and 18 months. The interviews (n=12–15) will be conducted twice with patients and caregivers jointly: once during the treatment phase (3 months) and once after completion of treatment (12 months). For the survey part, we estimated a sample size with 90% power and 5% significance to detect a minimal clinically important change in the Family Health Scale. Assuming an SD of √2×22 = 31, based on a cross-sectional SD of 22, 44 patients per group were required; to allow for dropout, 60 per group (240 total) were included. Patient and caregiver characteristics will be summarised descriptively. Longitudinal patient-reported outcomes will be analysed with linear mixed regression, separately for patients and caregivers. Changes will be reported as mean differences with 95% CIs and compared with published minimal clinically important differences or, if unavailable, 0.3×baseline SD. For the qualitative part, thematic analysis by Braun and Clarke is chosen to extract data, identify patterns and analyse data and themes from the interviews. NVivo will be used for coding interview data.Ethics and disseminationThe study will be conducted in accordance with the Helsinki Declaration. Measures will be taken to ensure confidentiality, data protection and participant safety throughout the study. The results will be published in peer-reviewed journals and conference presentations.Trial registration numberClinicalTrials.gov: NCT06433349. Protocol version 2.0, June 2024.

ObjectiveTo synthesise qualitative literature on (1) the perceptions of patients with cancer of participating in an exercise intervention while undergoing chemotherapy and (2) to inform and guide professionals in oncology and haematology practice.DesignA qualitative meta-synthesis based on Noblit and Hare’s seven-step meta-ethnography.Data sourcesSix electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL, EMBASE, PubMed, SCI-Expanded—SSCI and Scopus (final search June 2022) were used to identify qualitative literature containing individual or focus group interviews. The transparency of reporting for each study was assessed using the Consolidated criteria for Reporting Qualitative research checklist.ResultsThe search identified 5002 articles, 107 of which were selected for full-text review. Seventeen articles from five countries with patients undergoing chemotherapy during exercise interventions were included. Eleven articles were included in the meta-synthesis, which comprised 193 patients with various cancer diagnoses, disease stages, sexes and ages. Four main themes were identified: chemotherapy overpowers the body; exercise in battle with side effects; a break from gloomy thoughts; and a question of survivorship.Conclusions and implicationsThe meta-synthesis emphasised that patients with cancer undergoing chemotherapy and simultaneously participating in exercise interventions may experience momentary relief from overwhelming side effects, even though full bodily recovery may be perceived as a distant prospect. The synthesis offers a sparse empirical basis for gaining insight into what patients experience existentially following exercise interventions. It is up to patients to independently apply the transfer value of exercise to their own existential circumstances.

Background Several intervention studies have demonstrated that exercise training has beneficial effects among cancer patients. However, older cancer patients are underrepresented in clinical trials, and only few exercise-based studies have focused specifically on older patients with cancer. In particular, research investigating the effects of exercise training among older patients with advanced cancer is lacking. The purpose of the current study is to investigate the effect of a 12-week multimodal and exercise-based intervention among older patients (≥65 years) with advanced pancreatic, biliary tract or lung cancer, who are treated with first-line palliative chemotherapy, immunotherapy or targeted therapy. Methods PACE-Mobil-PBL is a two-armed randomized controlled trial. Participants will be randomized 1:1 to an intervention group ( N  = 50) or a control group ( N  = 50). Participants in the intervention group will receive standard oncological treatment and a 12-week multimodal intervention, comprised of: (I) supervised exercise training, twice weekly in the hospital setting, (II) home-based walking with step counts and goal-setting, (III) supportive and motivational nurse-led counseling, and (IV) protein supplement after each supervised training session. Participants in the control group will receive standard oncological treatment. The primary outcome is physical function measured by the 30-s chair stand test. Secondary outcomes include measures of feasibility, activity level, physical capacity and strength, symptom burden, quality of life, toxicity to treatment, dose reductions, inflammatory biomarkers, body weight and composition, hospitalizations and survival. Assessments will be conducted at baseline, and after 6, 12 and 16 weeks. Discussion The current study is one of the first to investigate the effect of an exercise-based intervention specifically targeting older patients with advanced cancer. PACE-Mobil-PBL supports the development of health promoting guidelines for older patients with cancer, and the study results will provide new and valuable knowledge in this understudied field. Trial registration The study was prospectively registered at ClinicalTrials.gov on January 26, 2018 (ID: NCT03411200 ).

Background The study evaluated the feasibility and safety of the exercise intervention and physical test procedures of our ongoing randomized controlled trial, examining the effect of physical exercise in newly diagnosed patients with multiple myeloma. Methods Patients are randomized 1:1 to a control group (usual care) or an intervention group (usual care and exercise) by block randomization with stratification of planned treatment, WHO performance status, and study site. The exercise intervention consists of eight supervised exercise sessions combined with home-based exercise over a 10-week period. Bone disease is systematically evaluated to determine limitations regarding physical testing and/or exercise. Feasibility outcome measures were study eligibility, acceptance, and attrition, and furthermore attendance, adherence, tolerability, and safety to the exercise intervention. Additionally, test completion, pain, and adverse events during the physical test procedures were evaluated. Outcome assessors were blinded to allocation. Results Of 49 patients screened, 30 were included. The median age was 69 years, range 38–90, 77% were males, and 67% had bone disease. Study eligibility was 82%, acceptance 75%, and attrition 20%. Attendance at supervised exercise sessions was 92%, and adherence to supervised exercise sessions and home-based exercise sessions was 99% and 89%, respectively. No serious adverse events attributed to exercise or physical tests were reported. All patients completed the physical tests, except for two patients, where physical test procedures were modified due to bone disease. Discussion The exercise intervention and physical test procedures were feasible and safe in patients with multiple myeloma, even in older patients with multiple myeloma and in patients with myeloma bone disease. Trial registration ClinicalTrials.gov. ID NCT02439112 . Registered on May 7, 2015.