Purpose of review As survival following colorectal cancer (CRC) continues to improve, an increasing number of survivors experience persistent nutrition impact symptoms (NIS) that adversely affect nutritional status, physical function, and quality of life. This review is timely in synthesising recent evidence on the prevalence, mechanisms, and clinical consequences of NIS, an area that remains under-recognised within survivorship care. Recent findings Recent studies consistently demonstrate that bowel dysfunction, including diarrhoea, urgency, faecal incontinence, and constipation, affects a large proportion of CRC survivors for many years after treatment. Evidence highlights multifactorial drivers of NIS, including surgical anatomy, radio- and chemotherapy-induced mucosal injury, and underdiagnosed conditions such as bile acid malabsorption, pancreatic exocrine insufficiency, and small intestinal bacterial overgrowth. Psychosocial distress, unmet supportive care needs, and unsupervised dietary restriction further exacerbate nutritional risk. Summary NISs are a major, enduring determinant of survivorship outcomes after CRC. Proactive, multidisciplinary care models that integrate nutritional assessment, targeted gastrointestinal investigation, and psychosocial support are essential to mitigate long-term morbidity. Future research should prioritise mechanism-driven interventions with nutritional and quality-of-life endpoints to inform evidence-based survivorship guidelines.

IntroductionPalliative 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.MethodsThe 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.ResultsA 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).ConclusionsCaregivers’ 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.ClinicalTrials.gov: NCT03088202.

BACKGROUND:Palliative care is inconsistently integrated into European cancer care, with fragmentation in provision, accessibility, and education leading to avoidable suffering and inefficient use of healthcare resources. There is a need to improve this through a Europe-wide initiative, the Joint Action on Networks of Expertise on Cancer (JANE-2), which builds on the earlier JANE initiative. Within JANE-2, one dedicated work package-6 (WP6) focuses specifically on palliative care. METHODS:JANE-2 spans 42 partners across 26 countries, in a cross-national, co-produced approach. As part of this, palliative care will be systematically appraised, aligned and ultimately transformed through one work package with four distinct tasks including: 1) organization and delivery, 2) digitalized care pathways with patient-reported outcomes, 3) education and competence frameworks, and 4) indicators for monitoring integration, using a "networks-in-networks" model designed for sustainability beyond JANE2. OUTCOMES:These will include scoping reviews, expert consultations, and modular surveys to support cross-country mapping. CONCLUSIONS:The palliative care work package within JANE-2 will deliver shared standards, pathways, education, and indicators in a sustainable European Network of Expertise that aims to embed palliative care as an inherent component of cancer care.

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.

There is a need for a comprehensive summary of qualitative research on the health-related quality of life (HRQoL) of people with advanced cancer requiring palliative care. We aim to systematically review qualitative studies on outcomes, needs, experiences, preferences, concerns and HRQoL of people in Europe with advanced cancer requiring palliative care over the last decade. Protocol registered ( www.crd.york.ac.uk/PROSPERO , CRD42024575065). The search was conducted in PubMed and Scopus, from 2013 onward. Inclusion criteria: qualitative studies addressing constructs related to the HRQoL of adults with cancer requiring palliative care in Europe. Abstracts and full texts were reviewed, data extracted, and risk of bias assessed independently by two researchers. A thematic analysis stratified by study objective was performed, grouping the emerging themes into categories (primary outcome). Of 18,256 articles identified, 20 fulfilled the inclusion criteria: 10 studies with a generic objective (whole palliative process or end-of-life phase), and 10 with specific focuses. Five categories (35 themes) emerged from the studies with generic focuses: ‘Psychological Function’ (n = 15), ‘Clinical Management’ (n = 8), ‘Symptoms and Physical Function’ (n = 6), ‘Social Function’ (n = 5), and ‘End-of-life’ (n = 1). Themes from the 7 studies focusing on treatment, services, and self-management also fitted into these categories, adding ‘Spiritual Well-being’. These findings emphasise the predominance of the psychological function domain in cancer patients requiring palliative care, including cancer-related anxiety and distress, coping mechanisms, control and decision-making, and fearing and expecting death. Additionally, clinical management unmet needs were identified in health care, information and communication, and end-of-life settings (home vs. hospital). Differences across Europe in access to palliative care can affect the symptoms suffered by patients with advanced cancer. Many questionnaires measuring quality of life among oncology patients in palliative care failed to address the whole range of their concerns. Through a systematic review of the literature, we identified 20 studies where these patients express their needs, experiences, preferences, and the impact on their quality of life. Beyond the traditional physical dimension, our results highlight the predominance of the psychological and spiritual dimensions among people in Europe with advanced cancer requiring palliative care over the last decade. Also, these patients often comment the importance of clinical management, which usually is not included in quality of life instruments, to consider the way the healthcare professionals address and inform them of each step, and to support shared decision-making, including where to spend their end-of-life stage: at home or in a hospital. New questionnaires to measure correctly the many dimensions identified by patients with advanced cancer will allow the healthcare systems in European countries improve their understanding and allow for policy changes to better support them at this last stage of their lives.

The European MyPath project aims to implement and evaluate electronic Patient-Reported Outcome Measures (ePROMs) in oncology. Nine oncology centres prepared the integration of an ePROMs tool into their local Electronic Health Records (EHRs), offering insight into the technological and organizational conditions required for successful adoption. Our findings highlight that multi-site integration of ePROMs into EHRs proved more complex and resource-intensive than anticipated, requiring adaptive approaches, with no one-size-fits-all solution.

BACKGROUND:Accurate estimation of prognosis and life expectancy is essential in patients with advanced cancer, as it guides clinical decision-making and helps avoid unnecessary interventions while facilitating timely integration of palliative and supportive care. Palliative radiotherapy plays a key role within multidisciplinary management, offering effective and well-tolerated symptom relief for complications such as pain, bleeding, and obstruction, with treatment strategies closely tailored to expected survival. Although recent advances in machine learning have improved prognostic accuracy by modeling complex variable interactions, their application in palliative care settings remains limited. PURPOSE:To aid clinical decision-making, we developed a decision tree multi-classifier to predict the mortality at 3, 24, and 52 weeks following palliative radiotherapy for bone metastases. METHODS:Data from 573 adults diagnosed with metastatic cancer were analyzed. The primary endpoint was the overall survival (OS) defined as the number of months from treatment to death event. Four clinically relevant classes were defined: Class 0 (OS: ≤ 3 weeks), Class 1 (OS: 3-24 weeks), Class 2 (OS: 24-52 weeks) and Class 3 (OS ≥ 52 weeks). Candidate covariate predictors consisted of 65 clinical, dosimetric and laboratory variables. Two supervised decision tree machine-learning models were trained and validated using the Python package. A SHapley Additive exPlanations (SHAP) explanaibility analysis was performed to infer the global and local feature importance. RESULTS:The SHAP analysis selected three laboratory variables, the interleukin8, haemoglobin and lymphocytes count as the first three ranked variables representing the major impact on OS in each of the four classes and accounting for more than 80% of contribution. In all classes, higher chance of OS was associated with low values of interleukin8 (IL8) and higher values of haemoglobin (HEM) and lymphocytes count (LYMPH). Pre-treatment values of IL8 > 36.7 relocated more than 50% of patients with survival < 3 weeks and only 1.5% of patient with survival > 52 weeks. On the other hand, pre-treatment values of IL8 < 19 relocated about 92% of patients with survival > 52 weeks. Patients are then additionally separated based on the lymphocytes count (LYMPH). LYMPH values higher than 7.5 will drive the probability of survival > 52 weeks still over 90% while it drops down to 2.1% for LYMPH < 7.5. CONCLUSION:An explainable machine learning approach based on decision trees is able to predict the survival at different timing after radiotherapy in patients with advanced cancer. This approach provides an intelligible explanation of individualized risk prediction, helping clinicians to identify the best strategy for patient stratification and treatment selection.

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. 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. 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. 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. Cancer treatment often focuses primarily on treating the tumor, while the emotional, physical, and psychological impacts on patients are overlooked. These factors can significantly affect patients' quality of life during and after treatment. The study addresses the challenge of integrating patient-centered care into cancer treatment, an approach that considers patients' overall well-being, not just their cancer. This study is part of the European Union-funded project MyPath, that aims to develop a digital tool supporting more patient-centered cancer care in Europe. Understanding the perspectives of healthcare providers is essential in ensuring that the tool fits with real-world clinical settings. The main point of this study is to explore how healthcare providers view patient-centered care and the role of digital tools in improving quality of life through better symptom management. The results show that healthcare providers recognize the importance of enhancing quality of life and believe that digital tools could support a more patient-centered approach to care. However, they tend to view patient-centered care as more relevant to end-of-life or palliative care, rather than active cancer treatment. This suggests that while digital tools hold potential to improve quality of life, a shift in mindset and hospital cultures is needed to make patient-centered care an equal part of cancer treatment, rather than a competing focus.

Background: Undernutrition and cachexia are common in advanced cancer and often linked to systemic inflammation. While inflammation is associated with poorer prognosis, accelerated weight loss, and reduced treatment tolerance, its direct impact on food intake remains insufficiently investigated. Aim: To examine the association between systemic inflammation and energy and protein intake over time in patients with advanced cancer. Methods: A total of 170 patients from the Palliative Radiotherapy and Inflammation Study were included. Nutritional status was assessed using PG-SGA SF. Dietary intake was recorded using repeated 24 h recalls. Systemic inflammation was defined as CRP > 10 mg/L. Mixed linear models were applied to evaluate the association between inflammation energy and protein intake over time. Results: Systemic inflammation (CRP >10 mg/L) was present in 87 (51%) patients and associated with significantly lower energy (-3.6 kcal/kg, p = 0.04) and lower protein intake (-0.25 g/kg, p = 0.003). Patients with inflammation were more often undernourished and had shorter survival. Conclusions: Systemic inflammation is likely associated with clinically relevant reductions in energy and protein intake in advanced cancer. CRP may help identify patients for whom standard nutritional support is insufficient.

To identify and synthesize evidence from European qualitative studies on cancer-related quality of life outcomes, needs, experiences, preferences, and concerns of people undergoing cancer treatment in the last decade. Systematic review ( https://www.crd.york.ac.uk/PROSPERO , CRD42024575065) of European studies using qualitative methodology, assessing constructs related to HRQoL, and involving adults receiving cancer treatment. The search was performed in PubMed and Scopus from January 2013 to July 2024. Titles, abstracts, and full texts screening, data extraction and risk of bias assessment were conducted independently by two researchers. The main outcomes were the themes reported in each study. The thematic analysis was performed by organizing the themes of the studies into categories. Out of 18,256 articles initially identified, 36 met the inclusion criteria: 21 with generic and 15 with specific objectives. Five categories encompassing 110 themes were identified from the generic studies: Psychological Function (n = 41), Clinical Management (n = 26), Symptoms and Physical Function (n = 18), Social Function (n = 16), and Life Disruption (n = 9). Eleven studies with specific objectives focused on clinical management with all their themes fitting within the categories identified in the generic studies. Results showed the predominance of psychological function and clinical management themes. Symptoms and physical function, social function, and life disruption maintained their importance within the classical HRQoL framework. The emergence of clinical management is consistent with the growing patient-centered care approach, suggesting the need to integrate this content into the evaluation of patients undergoing cancer treatment. Limitations: most European countries were not represented, and publication bias could hide traditional domains.

Background Cancer is a leading cause of death in Europe, and it has a major impact on the quality of life of those affected by it. Quality of life is a multifaceted concept affected by a range of factors, namely individual, organisational, and national health system factors. Despite existing research on individual and organisational aspects, little is known about the association between health system factors and quality of life. Therefore, the aim of this study is to explore the health system factors that relate to the quality of life of people with (a history of) cancer and to identify potential gaps in literature.Methods We conducted a rapid review to gain insight into what is known in scientific literature regarding health system factors that are related to the quality of life of people with (a history of) cancer. We complemented our findings with a broad search in various grey literature databases.Results The rapid review included 31 studies, which were supplemented by six health policy reports and one book chapter. Based on the review of scientific and grey literature, we constructed a list of ten health system factors that may relate to the quality of life of people with (a history of) cancer.Conclusions We compiled a list of ten health system factors that may relate to the quality of life of people with (a history of) cancer. Seven factors were identified from and described in scientific literature. Three factors, namely 'policy and vision', 'research and innovation', and 'quality of care delivery', were identified in grey literature. The relation of these health system factors needs to be studied further to better understand what may impact on the quality of life of people with (a history of) cancer.

The global cancer burden is expected to increase dramatically in the coming years, providing considerable difficulties to healthcare systems around the world. While clinical practice frequently focuses on physical symptoms, there is a growing awareness that integrated, patient-centered care, particularly for patients at the end of life (EoL), can be critical for their wellbeing by addressing all aspects of their individual needs. This paper focuses on the essential role of spirituality as a component of quality of life across the EoL trajectory. Assessment of spiritual needs may have clinical value by providing patients with greater self-understanding and autonomy, allowing clinicians to propose humanized and targeted interventions, and guiding healthcare systems in optimizing resource allocation and economic sustainability. Despite its relevance, spiritual care is under-integrated into standard practices due to institutional barriers such as workload, insufficient staff training, and cultural values. To address these gaps, this paper presents the EUonQoL project as a model for developing culturally adapted, patient-centered assessment toolkits. This perspective argues that a comprehensive evaluation of spiritual wellbeing might be regarded as a therapeutic goal to ensure that end-of-life treatment matches with the individual's real priorities and needs.

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.

Purpose The European Oncology Quality of Life (EUonQoL) project aims to develop a questionnaire toolkit (EUonQoL-Kit) to assess the quality of life (QoL) of cancer patients and survivors across Europe. Methods The EUonQoL-Kit development used mixed-methods and a co-design approach. Data was collected in six countries (Denmark, France, Germany, Italy, Netherlands and UK). The target populations were patients in active treatment (A), survivors (B) and patients requiring palliative care (C). A review of existing QoL theoretical models produced an initial EUonQoL conceptual framework. Semi-structured interviews and a Delphi survey evaluated/modified the framework. Existing validated items were used to construct the toolkit, including Computer Adaptive Testing (CAT), where available. A usability study evaluated EUonQoL-Kit.v1. Data triangulation and consensus methodology guided EUonQoL-Kit.v2. Results The initial conceptual framework covered four multi-dimensional domains: physical, social and overall health, and psychological wellbeing. The interviews and Delphi survey included 75 and 155 participants, respectively. The domain ‘healthcare experience’ was identified and included in the framework. EUonQoL-Kit.v1 resulted in three static questionnaires, one for each target population (n items- A=75; B=67; C=79). Following usability testing with 53 participants, EUonQoL-Kit.v2 was produced via a multi-stakeholder consensus development panel, creating a shortened version (n items- A=50; B=50; C=44). Dynamic versions of these questionnaires were developed using the EORTC CAT Core system. Conclusions EUonQoL-Kit is a novel toolkit developed to assess QoL across the cancer continuum and inform health policy within Europe. Its psychometric properties are currently being evaluated using data collected on more than 4200 patients across 32 countries.

Digital tools facilitate the timely collection of patient-reported outcome and experience measures (ePROMs/PREMs), but there is no consistent reporting on the technical and content adaptations made essential to implementing these digital tools in a specific context. Adaptations made to ePROMs/ePREMs can improve data quality, clinical management, and patient outcomes. We explored how studies report on adaptations and the reasons and types of these during an implementation process of ePROMs/ePREMs systems in routine cancer care. We conducted a systematic scoping review. We searched PubMed, Embase, PsychINFO, and CINAHL (inception—May 5, 2023), using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. Guided by the Population, Concept, and Context (PCC) framework, data were extracted and summarised in tables in four dimensions: context, content, evaluation, and training. The systematic search found n = 5597 publications, and n = 20 were included (85

BACKGROUND:Opioids in step III of the WHO analgesic ladder are the standard of care for treating cancer pain. However, a significant minority of patients do not benefit from therapy. Genetics might play a role in predisposing patients to a good or poor response to opioids. Here, we investigated this issue by conducting a genome-wide association study (GWAS). METHODS:We genotyped 2057 European advanced cancer patients treated with morphine, buprenorphine, fentanyl and oxycodone. We carried out a whole-genome regression model (using REGENIE software) between genotypes and the opioid response phenotype, defined as a numerical score measuring patient pain intensity. RESULTS:The GWAS identified five non-coding variants on chromosome 20 with a p-value <5.0 × 10-8. For all of them, the minor allele was associated with lower pain intensity. These variants were intronic to the PCMTD2 gene and were 200 kbp downstream of OPRL1, the opioid related nociceptin receptor 1. Notably according to the eQTLGen database, these variants act as expression quantitative trait loci, modulating the expression mainly of PCMTD2 but also of OPRL1. Variants in the same chromosomal region were recently reported to be significantly associated with pain intensity in a GWAS conducted in subjects with different chronic pain conditions. CONCLUSIONS:Our results support the role of genetics in the opioid response in advanced cancer patients. Further functional analyses are needed to understand the biological mechanism underlying the observed association and lead to the development of individualized pain treatment plans, ultimately improving the quality of life for cancer patients. SIGNIFICANCE STATEMENT:This genome-wide association study on European advanced cancer patients treated with opioids identifies novel regulatory variants on chromosome 20 (near PCMTD2 and OPRL1 genes) associated with pain intensity. These findings enhance our understanding of the genetic basis of opioid response, suggesting new potential markers for opioid efficacy. The study is a significant advancement in pharmacogenomics, providing a robust dataset and new insights into the genetic factors influencing pain intensity, which could lead to personalized cancer pain management.

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 (ECOG) performance status, survival, and treatment groups. Findings For the total cohort (N = 912), median overall survival (mOS) after BM diagnosis was 5.9 months (95% confidence interval [CI] 5.2-6.7). ECOG 2-4, uncontrolled extracranial metastases, and >= 5 BM were associated with short survival. In patients treated with radiotherapy, survival for patients with ECOG 2 and those with ECOG 3-4 was similar and particularly short for the whole brain radiotherapy (WBRT) group (ECOG 2: 2.9 months [95% CI 2.3-3.5]; ECOG 3-4: 2.1 [1.5-2.7]). Patients surviving <6 months after BM diagnosis reported worse QoL scores two months after ACT; patients surviving >6 months reported stable scores over time. Interpretation Patients with ECOG 2-4, especially those with uncontrolled extracranial metastases and >= 5 BM, are at risk for futile ACT. BM treatment guidelines should strongly caution against ACT to patients with expected survival <6 months and specifically advise against WBRT.

IntroductionThere is a general need for sharing practical examples of Patient and Public Involvement (PPI) within the research field to learn from and inspire. The aim of this article is to describe our process evaluation of PPI within the development process of the EUonQoL-Kit, a new set of quality of life questionnaires aimed at people with (past experience of) cancer.MethodsFive co-researchers (people with cancer and informal caregivers) were recruited and received training and support from a dedicated team of researchers. Involvement in the development process of the EUonQoL-Kit consisted of four major events: two workshops, a consensus meeting and a stakeholder forum. We have collected event documents, that is, meeting agendas, presentation slides, minutes of the events and minutes of meetings with co-researchers before and after the events, and qualitatively analysed these using the Cube Framework.ResultsOur process evaluation showed that, over time, discussions evolved from focusing on the technical aspects of the EUonQoL-Kit to co-researchers' experiences as input for the questionnaires. Researchers' inexperience with PPI prompted the organisation of a training workshop. After this, researchers prepared the co-researchers better for the meetings and engaged them more actively by asking specific questions. All these developments contributed to a more active participation of co-researchers.ConclusionPPI in the development process of the EUonQoL-Kit was a learning process. Factors that helped include allocating time and resources, actively creating space for co-researchers' input, providing support by researchers specifically responsible for the PPI activities and realising the importance of informal contact. Future PPI efforts should incorporate these principles from the start to facilitate successful collaboration between researchers and co-researchers.Patient or Public ContributionPeople with cancer and informal caregivers played a significant role in this study. They were involved as co-researchers in all stages of the development process of the EUonQoL-Kit. In addition, they were involved in the qualitative analysis of the data presented in this article, the writing of the project report and the writing of this article as co-authors.

Cancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a digital, patient centred system to assess HRQoL based on evaluations and preferences of cancer patients and survivors: the EUonQoL-kit. Patients across the cancer care continuum, healthcare professionals and researchers from six European countries (Denmark, France, Germany, Italy, The Netherlands and United Kingdom) were asked to rate the importance of 44 pre-selected HRQoL subdomains over a maximum of three Delphi survey rounds. We evaluated the importance of HRQoL subdomains for three target populations: patients undergoing active treatment, cancer survivors and patients receiving palliative care. The results were discussed during a consensus meeting. 96 patients and 59 healthcare professionals participated in the Delphi study. After three rounds, consensus was reached for 20 subdomains: ability to work, communication with healthcare professionals, diarrhoea, fatigue, fear of recurrence, global health status, impact of treatment side effects, impact on children/family, insomnia, instrumental activities of daily living, maintaining independence, mobility, nausea, overall quality of life, pain, partner relationship, social activity limitations, social isolation, symptom awareness and uncertain prognosis. The subdomains pain and fear of recurrence were rated as important for all three target populations. Subdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility activity, future outlook, social roles activities, family relationships, social isolation, self-efficacy, overall HRQoL, and healthcare experience. The importance of the subdomains differed for patients in different phases of the cancer care continuum. These findings were used for the creation of the first version of the EUonQoL-Kit, as a base for its further development.