The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires are some of the most widely used patient-reported outcome measures (PROMs) for health-related quality of life assessment in oncology. The EORTC Item Library is an online platform comprising all EORTC PROMs that enables the creation of customised questionnaires (item lists). To characterise and better understand the breadth of functioning, disability and health coverage within the EORTC Item Library, this study aimed to link and analyse its content using the International Classification of Functioning, Disability and Health (ICF). A team of reviewers applied the most recent ICF linking rules to map the items currently included in the EORTC Item Library. Descriptive analysis was used to summarise the content covered in ICF categories and concepts coded as not covered or not definable. The 1076 EORTC items covered 1860 concepts overall, with most (n = 1641, 88.2

BACKGROUND:Previous studies show ambiguous results concerning quality of palliative care among patients with severe mental disorders, defined as schizophrenia, moderate to severe depression, and bipolar disorders. AIM:To investigate quality in specialist palliative care among Danish patients with pre-existing severe mental disorders using data from the Danish Palliative Database. DESIGN:Danish cohort study linking data from the Danish Palliative Database and hospital medical files. SETTING/PARTICIPANTS:All adult decedents in 2023 from Central Denmark Region affiliated with specialist palliative care. Hospital records were screened for severe mental disorders. Quality indicators included: Place-of-death, days from referral to death, specialist palliative care waiting time, discussion at multidisciplinary conferences and completion of symptom assessment. RESULTS:Of 1869 patients, 80 (4.3%) had pre-existing severe mental disorders. Compared to patients without mental disorders, these patients died younger and more often from non-cancer conditions. They were less likely to complete symptom assessment (Risk Ratio (RR): 1.49 (95% CI: 1.15;1.95)). Those who also received active psychiatric treatment experienced longer waiting times for specialist palliative care (Mean ratios (MR): 3.48 (95% CI: 1.06;11.39)) and shorter palliative care pathways (MR: 0.44 (95% CI: 0.20;0.96)) than patients without active psychiatric treatment. CONCLUSION:Danish patients with active severe mental disorders were less likely to complete symptom assessment, had longer waiting times and shorter specialist palliative care pathways. Future efforts should focus on timely access to specialist palliative care and health professionals supporting completion of symptom assessments in this population.

BACKGROUND:Vulvar cancer is a rare and mutilating disease with a high recurrence rate. Prior studies have reported relatively favorable survival rates after primary disease, while survival after recurrence is poor. Yet there is limited knowledge on recurrence and survival patterns following primary diagnosis, first, and second recurrence. Although many recurrences are local, their detection may be challenged by limitations in self-examination and inadequate knowledge of symptoms. Consequently, further knowledge of symptoms preceding a vulvar cancer recurrence may improve understanding of early manifestations to inform patient education and support early detection and treatment of recurrent disease. OBJECTIVES:In this study, we aimed to describe recurrence incidences for first, second, and third recurrence, estimate overall survival following primary diagnosis, first, and second recurrence, and identify symptoms preceding first recurrence. STUDY DESIGN:We conducted a population-based nationwide cohort study in Denmark. All patients with primary vulvar squamous cell carcinoma who were prospectively registered in the Danish Gynecological Cancer Database during 2011-2022 and who underwent curatively intended treatment were included. Data were validated and enriched with data from hospital charts. The cumulative incidences of first, second, and third recurrence were estimated using the Aalen-Johansen estimator, accounting for death before recurrence as a competing event. Overall survival was estimated by the Kaplan-Meier method. Symptom analyses were descriptive and included symptom frequencies stratified by recurrence location and visual exploration of symptom co-occurrence using selected 2×2 tables and bar-chart summaries. RESULTS:We identified 800 patients with a median follow-up of 68.8 months (interquartile range (IQR) 39.7-104.9). The cumulative incidence of first recurrence was 19.2% (95% confidence interval (CI) 16.6-22.1) at 24 months and 35.0% (95% CI 31.3-38.8) at 120 months. The five-year overall survival following primary diagnosis was 73.3% (95% CI 69.9-76.3), decreasing to 38.2% (95% CI 31.5-44.9) following the first recurrence, though only to 49.8% (95% CI 40.1-58.7) following the first isolated local recurrence. More than half of the patients with a recurrence had an isolated local recurrence (n=149, 58.9%), one fourth had a distant recurrence (n=60, 23.7%), and only a few had either a locoregional (n=17, 6.7%) or an isolated regional recurrence (n=22, 8.7%). Median time from completion of primary treatment to local, locoregional, regional, or distant recurrence was 24.5 (IQR 10.5-43.7), 7.0 (IQR 3.9-23.7), 8.1 (IQR 4.9-13.3), and 9.0 (IQR 4.8-19.4) months, respectively. Nearly all patients with a local, locoregional, or regional recurrence experienced at least one out of several predefined symptoms preceding the first recurrence (n=213, 94.7%). The symptoms varied according to recurrence location. Itching often appeared alongside vulvar pain in local recurrences, while groin tumors frequently appeared with groin pain in regional recurrences. CONCLUSIONS:Vulvar cancer recurrences were common, with isolated local recurrences occurring at a relatively constant rate for up to nine years post-treatment. Overall survival after primary diagnosis was favorable but decreased markedly following first and second recurrence. Most recurrences were preceded by predefined symptoms, highlighting the importance of symptom awareness.

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.

Cancer remains a leading cause of morbidity and mortality worldwide. Given its substantial burden, quality of life has become a key outcome in cancer care and research. Patient-reported outcome measures (PROMs) are commonly used to assess quality of life. Although qualitative research is essential for establishing PROM content validity, patient narratives are less often collected and analysed systematically once PROMs are implemented. Adding open-ended responses to quantitative PROM data may provide policy-relevant insights into what patients themselves prioritise. This study has aimed to identify the factors that people living with or beyond cancer across Europe perceive as having the greatest impact on their quality of life. Following a pan-European validation study of the newly developed EUonQoL-Kit – a set of questionnaires designed to assess the quality of life of people living with or beyond cancer in Europe – the responses to the final open-ended question “Having completed the questionnaire, what do you feel most impacts your quality of life?” were collected. Responses underwent qualitative thematic analysis using a coding framework iteratively developed and interpreted by researchers and people with lived experience of cancer involved as ‘co-researchers’. Of the 4,284 cancer patients and survivors participating in the EUonQoL-Kit validation study, 3,350 (78.2%) provided a response to the final open-ended question. Factors perceived as having the greatest impact on quality of life were categorised into 23 distinct themes, covering six overarching domains: Physical health, Psychological wellbeing, Social health, Overall health, Healthcare experience and Environment. The most frequently reported factors included physical symptoms, overall health, relationships and connectivity, emotions and feelings, and impact of care pathway. This study provides a comprehensive overview of the factors that impact quality of life most in people living with or beyond cancer across Europe. Combining structured PROMs with open-ended patient input may support more patient-centred quality of life measurement and interpretation and help align care and policy priorities with what matters most to patients.

BACKGROUND:Cancer is among the largest drivers of morbidity and mortality worldwide, causing physical, psychological and emotional strain for both patients and caregivers. AIM:We estimated the cost-effectiveness of two dyadic psychoeducational interventions (FOCUS+ and iFOCUS) compared to usual care for people with advanced cancer and their primary family caregiver. METHODS:This was an economic evaluation within a clinical trial. Patient-caregiver dyads were recruited in Belgium, Denmark, Ireland, Italy, Netherlands and the UK from 2021 to 2023. We estimated costs by combining questionnaire responses with unit costs in euros (€) for 2022 and calculated outcomes as quality-adjusted life years (QALYs). Primary endpoint was 12 weeks, with secondary analysis at 24 weeks (trial exit). RESULTS:We recruited 431 dyads (140 FOCUS+, 148 iFOCUS, 143 usual care), of whom 281 (65%) participated to trial end. In primary analysis, estimated treatment effect of FOCUS+ versus usual care on total costs was +€253 (95% CI: -1440 to +3466), and estimated effect on QALYs was +0.010 (-0.02 to +0.04). For iFOCUS compared to usual care, the estimated effects were -€178 (-3047 to +2059) and - 0.001 (-0.04 to +0.04). Estimated incremental cost-effectiveness compared to usual care was highly uncertain in primary analysis, and in sensitivity analyses to timeframe and perspective. CONCLUSION:Two dyadic, psychoeducational interventions for people with advanced cancer and their caregivers were not found to have a significant effect on costs, QALYs or cost-effectiveness compared to usual care. Multiple additional lessons for future trials in serious illness have been identified. TRIAL REGISTRATION:Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349.

Purpose Home care nurses play a central role in providing palliative care to patients with life-limiting illnesses. Although holistic needs assessment is recommended, systematic assessment is not standard in primary care, and nurses often struggle to address complex psychosocial and existential concerns. PRO-Pall is a structured instrument developed to support holistic palliative care across healthcare sectors. This study explores home care nurses’ experiences with PRO-Pall, focusing on its perceived benefits and implementation challenges. Methods Qualitative interviews were conducted with home care nurses from municipalities actively testing PRO-Pall. Data were analysed using thematic analysis. Drawing on Bourdieu’s theory of practice, the analysis interprets nurses’ engagement with the instrument through the concepts of habitus, field, and capital. Results Two overarching themes emerged: (1) Enhancing holistic care with patients and within families, and (2) Systemic barriers to holistic care within homecare institutions and across interdisciplinary and cross-sectoral collaboration. Nurses found PRO-Pall useful for initiating sensitive conversations and adapted the tool flexibly to support individual needs. Its focus on holistic care aligned with nurses’ professional habitus. However, systemic barriers, including limited time, inadequate digital infrastructure, and fragmented coordination, restricted consistent use. Conclusions Home care nurses regard PRO-Pall as a meaningful support for holistic palliative care. Effective integration depends on alignment between individual dispositions, organisational conditions, and access to social, cultural, symbolic, and economic capital. Strengthening training, resources, and collaborative structures is essential for the sustainable use of systematic needs assessments in municipal palliative care.

The European Organisation for Research and Treatment of Cancer’s computerized adaptive test instrument, the EORTC CAT Core, provides dynamic, individualised assessment across 14 health-related quality of life domains, including emotional functioning (EF), which encompasses anxiety and depression. When one of these symptoms is of primary interest, separate scores may better support clinical decision-making and increase measurement sensitivity. The aim here was to evaluate separate item banks for anxiety and depression as potential supplements to the EORTC CAT Core. Responses to 33 candidate EF items from 1,023 cancer patients were available from the original EF item bank project. Expert-based content classification was followed by psychometric analyses, including confirmatory factor analysis (CFA), item response theory (IRT) model calibration and evaluation, differential item functioning (DIF) analyses, and CAT simulations to assess measurement properties of the two item banks. Experts allocated nine items to anxiety and 17 to depression while seven items were judged to assess something else. CFA supported unidimensionality for each item bank. All items demonstrated acceptable IRT model fit, and no DIF of practical relevance was identified. CAT simulations indicated greater measurement precision than fixed 1- and 2-item scales, with potential sample size savings of up to 30

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.

ObjectivePatient-reported outcome measures (PROMs) and their integration into clinical practice are important topics in health care. However, little is known about health care professionals' (HCPs) perception and use of PROMs. We therefore investigated the use of PROMs by HCPs in specialized palliative care (SPC) and how PROM data are perceived by these HCPs.MethodA survey was sent to the heads of SPC services in Denmark (N = 41), asking them to distribute the survey to their HCPs with patient contact.ResultsThe survey (N = 160) showed that 75% of the HCPs reported that they looked at PROM responses from at least 75% of the patients in whom PROMs had been performed prior to the first consultation, whereas the proportion of HCPs looking at PROM responses was lower for subsequent contacts (45%-51%). Sixty percent of the HCPs reported that they used PROMs in the first consultation, and around 40% compared a completed PROM from the first consultation with PROMs done in later consultations. Many HCPs experienced that PROMs gave them knowledge about the patient's situation (89%), was meaningful (86%), and that they understood how and why PROMs were used (92%). According to most HCPs, patients understood why they completed a PROM (84%), and patients found the completion meaningful (70%). Few differences between health professions were found.ConclusionsIn Denmark, PROMs are often part of the first SPC consultation and generally used in dialogue with the patient. However, increased integration of PROMs is needed later in the palliative trajectory.

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.

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.

Computerized adaptive tests (CATs) provide individualised measurement, using score estimates based on the patient’s prior responses to select the next most informative item. However, as no score estimate is available at the outset, the start item is typically not individualised. The European Organisation for Research and Treatment of Cancer (EORTC) CAT Core covers 15 health-related quality of life (HRQoL) domains. We explored whether scores from one domain could be used to obtain initial score estimates and hence, individualised start items for another domain, thereby improving measurement. For each HRQoL domain, we evaluated the ability to predict scores using each of the 14 other domains in a large international sample of cancer patients (N = 10,084). Using simulations, we compared the impact of individualised versus standard fixed start item on CAT measurement precision. Across domains, predicted scores were within one standard deviation of the observed score in 72–89

Cancer treatment greatly impacts physical and psychological functioning of cancer patients, negatively affecting their quality of life (QoL). This Umbrella Review (UR) aims to systematically summarize psychological and social factors positively or negatively associated with QoL in cancer patients undergoing treatment. Four scientific databases (PubMed, Embase, Scopus, and PsycInfo) were searched to identify systematic reviews between 2012 and 2023 analyzing the relationship between QoL and psychosocial factors in cancer patients in treatment. The UR was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and Joanna Briggs Institute (JBI) review guidelines. The methodological quality of the included studies was evaluated using Assessment of Multiple Systematic Reviews 2 (AMSTAR2). Eighteen systematic reviews were included. The major psychological factors influencing QoL are depression, coping strategies, anxiety, and distress. Results also demonstrate the significant impact of social factors on QoL: perceived social support has a positive influence on QoL of cancer patients, while lowered social support, impaired social functioning, interactions, and role limitations worsen their QoL and overall well-being. This UR provides a comprehensive overview of the psychosocial factors impacting QoL of cancer patients and serves as a prominent base for developing questionnaires and policies aimed at measuring QoL in cancer patients undergoing treatment. Moreover, the findings of the study can guide future research or the development of personalized clinical interventions aimed at improving QoL for this cancer population group.

Most patients with pancreatic cancer have advanced disease at the time of diagnosis and a poor prognosis. Therefore, it is important to investigate the symptom burden for these patients, e.g., at the start of specialized palliative care (SPC). To investigate symptoms, problems, and quality of life in patients with pancreatic cancer at the start of SPC and to explore the associations with demographic factors. The data sources were the national Danish Palliative Care Database and Danish Pancreatic Cancer Database. Patients with pancreatic and peri-pancreatic cancer, who were diagnosed and died between 2011 and 2018 and admitted to SPC were included. Data about symptoms, problems, and quality of life were collected by EORTC QLQ-C15-PAL (10 scales ranging 0–100). Using ordinal logistic regression analyses, the associations between demographic factors and the symptoms and functions scores and QOL (outcomes) were investigated. From 2011–18, 3,497 patients with pancreatic cancer were admitted to SPC and 58

The development of the first European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) health-related quality of life (HRQoL) questionnaires contributed to the systematic uptake of HRQoL as an endpoint in cancer clinical trials, and to the measurement of HRQoL for individual assessment in routine care. Following a modular approach, these patient-reported outcome (PRO) measures (PROMs) ensure that both generic and disease-specific issues are assessed, enabling comparison of PROs across groups and studies. The application of a comprehensive and continually refined methodology for developing and updating these PROMs has been crucial in supporting their psychometric and cross-cultural validity, and their continued implementation in clinical research. However, the advancement of measurement science, the more widespread implementation of PROMs, and the significant evolution of anti-cancer therapies over the last decades have highlighted the need to adopt more flexible approaches to PRO assessment to ensure that PROMs remain relevant and fit-for-purpose. The QLG has responded to this call by implementing more tailored PRO measurement approaches through the development and release of the computerised adaptive test (CAT) version of the EORTC QLQ-C30 (i.e., the EORTC CAT Core) and the EORTC Item Library. The EORTC Item Library is an interactive online platform that allows for the creation of customised questionnaires (item lists) from the pool of available items derived from established EORTC QLG PROMs. The aim of this article is to describe the current EORTC QLG approach to PRO measurement in oncology, covering important historical developments and best practice recommendations.

BACKGROUND:Computerized adaptive test (CAT) provides individualized measurement, using the patient's previous responses to select the next most informative item. However, the first item, the start item, is usually not individualized as no score estimate is available a priori. The European Organisation for Research and Treatment of Cancer (EORTC) CAT Core covers 15 health-related quality of life domains. Scores for one domain may be used to obtain initial score estimates for another domain. We assessed the potential for using such cross-domain information to individualize start item selection for the EORTC CAT Core physical functioning. METHODS:The potential for predicting physical functioning (PF) scores from each of the 14 other domains using linear regression was assessed in an international, mixed sample comprising 10,084 cancer patient assessments. Using Monte Carlo CAT simulations, the impact of individually selected PF start items vs. fixed start item for CAT measurement precision was assessed. RESULTS:Depending on the domain predicting PF, the correlation of predicted and observed PF scores ranged 0.25-0.71 and the predicted PF scores were within 1SD of the observed PF scores for 57-85% of the patients. The CAT simulations showed that individually selected start items improved measurement precision for the initial steps of CATs. The application of individual start items had trivial or no impact on measurement precision when the CAT asked three or more items. CONCLUSIONS:Simple linear regression may provide useful cross-domain predictions. Using individualized start items may increase measurement precision of the EORTC CAT Core for the initial steps of CAT which may be of relevance for short CATs.