ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2018
Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 50 papers, 1 of them a synthesis that pooled it.
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Who cites it
50 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Review of response rates over time in registry-based studies using patient-reported outcome measures.BMJ open · 2020Pooled it
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- Gastrointestinal symptoms and health-related quality of life before and after pancreatectomy for pancreatic cancer (GO-PANC): longitudinal nationwide study.The British journal of surgery · 2026Article
- Patient Reported Outcomes in Multidisciplinary Care for High-risk Head and Neck Cutaneous Squamous Cell Carcinoma.Acta dermato-venereologica · 2026Article
- Do non-responders of a geriatric screening questionnaire face lower one-year survival compared to responders? A retrospective cohort study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Anticipating incomplete patient-reported outcomes in schizophrenia: a machine learning approach to predict the occurrence of missing data.Health and quality of life outcomes · 2026Article
- Predicting health-related quality of life two years post-diagnosis across seven cancer types: using machine learning to identify vulnerable patients.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Prevalence and determinants of sleep problems in cancer survivors compared to a normative population: a PROFILES registry study.Journal of cancer survivorship : research and practice · 2026Article
- Sex differences in health-related quality of life and psychological distress among colorectal cancer patients: a 2-year longitudinal study.Journal of cancer survivorship : research and practice · 2025Observational
- Fatigue in long-term cancer survivors: prevalence, associated factors, and mortality. A prospective population-based study.British journal of cancer · 2025Article
- Getting valuable and valid insight in life after ICU: evaluating the representativeness of a large cohort of ICU survivors.International journal for quality in health care : journal of the International Society for Quality in Health Care · 2025Article
- Understanding the Experiences of Patients With Pancreatic Cancer: Quantitative Analysis of the Pancreatic Cancer Action Network Patient Registry.Journal of participatory medicine · 2025Article
- Article
- The course of self-perceived cognitive functioning among patients with lymphoma and the co-occurrence with fatigue and psychological distress.Journal of cancer survivorship : research and practice · 2025Article
- Development of a prediction model for clinically-relevant fatigue: a multi-cancer approach.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Health-related quality of life benefits of arsenic trioxide in patients with non-high-risk acute promyelocytic leukemia are sustained over time: long-term results of the GIMEMA APL0406 trial.Annals of hematology · 2024Observational
- Current Trends and Outcomes in Cellular Therapy Activity in the United States, Including Prospective Patient-Reported Outcomes Data Collection in the Center for International Blood and Marrow Transplant Research Registry.Transplantation and cellular therapy · 2024Article
- Understanding the multilevel factors influencing the implementation of digital health interventions for supportive care in Adolescents and Young Adult (AYA) cancer survivorship: determinants of adopting mindfulness-based mobile applications.Implementation science communications · 2024Article
- Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors - assessing the reasonableness of the "missing completely at random" assumption.BMC medical research methodology · 2024Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
purposeThe 'Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship' (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry.
methodsBetween 2008 and 2015, cancer survivors with different cancer diagnoses (N = 14,011) were invited to participate in PROFILES registry studies, of whom 69% (N = 9684) participated. Socio-demographic and clinical characteristics and survival data, collected through the Netherlands Cancer Registry, were associated with participation versus non-participation in multivariable logistic regression analyses and cox proportional hazard regression models, respectively.
resultsParticipants had a significantly better survival compared to non-participants (HR = 1.47, P < .01). Participation was associated with male gender, being 60-70 years old, high socio-economic status, receiving any treatment, receiving radiotherapy, having no comorbidities, and a cancer diagnosis 2-3 years before invitation. Sensitivity analysis demonstrates that the health-related quality of life (HRQoL) might be up to 1.3 points lower (scale 0-100) using hot deck imputation compared to non-imputed participant data.
conclusionsCancer survivors not participating in observational PROs research significantly differ from participants, with respect to socio-demographic and clinical characteristics, and survival. Their HRQoL scores may be systematically lower compared to participants. Therefore, even in PRO studies with relatively high participation rates, observed outcomes may represent the healthier patient with better outcomes.
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