ArticleJournal of cancer survivorship : research and practice2019
Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out.
Article in Journal of cancer survivorship : research and practice, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 31 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
31 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Factors associated with response to patient-reported outcome measures: a systematic review of systematic and scoping reviews, and meta-analyses.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Pooled it
- Effects of a WeChat-based multimodal psychoeducational intervention on psychological well-being and quality of life in acute leukaemia patients in China: a randomised controlled trial.Journal of cancer survivorship : research and practice · 2022Trial
- Trial
- Characteristics and patient-reported outcomes associated with dropout in severely affected oncological patients: an exploratory study.BMC medical research methodology · 2021Trial
- Long-term health-related quality of life and lifestyle behavior of patients with acute myeloid leukemia.The oncologist · 2026Article
- ATTITUDE - Addressing attrition in longitudinal cancer cohorts: an in-depth qualitative analysis of experiences and perspectives on participation in longitudinal studies among breast cancer survivors.Breast cancer research and treatment · 2026Observational
- Patients' and relatives' perspectives on the quality of end-of-Life care in advanced cancer: From the final months to bereavement.PloS one · 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
- Observational
- 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
- Socioeconomic disparities in health-related quality of life and healthcare use in the last year of life of patients with advanced cancer: longitudinal results from the eQuiPe study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Observational
- 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
- Real-world quality-of-life of patients with HR+/HER2- advanced breast cancer treated with palbociclib plus endocrine therapy: EORTC QLQ-C30 results from POLARIS.Breast cancer research and treatment · 2025Observational
- 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
- Impact of comorbidity on health-related quality of life in newly diagnosed patients with lymphoma or multiple myeloma: results from the PROFILES-registry.Annals of hematology · 2024Article
- Head and neck cancer patients with geriatric deficits are more often non-responders and lost from follow-up in quality of life studies.European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery · 2024Article
- The association of circadian parameters and the clustering of fatigue, depression, and sleep problems in breast cancer survivors: a latent class analysis.Journal of cancer survivorship : research and practice · 2023Article
- Sociodemographic, mental health, and physical health factors associated with participation within re-contactable mental health cohorts: an investigation of the GLAD Study.BMC psychiatry · 2023Article
- Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review.Health and quality of life outcomes · 2023Article
Corrections and comments
- Erratum issued
Authors and funding
7 authors.
Funding
Abstract
purposeAttrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates.
methodsSociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time.
resultsParticipants who dropped out were more likely to be female (OR = 1.23, CI = 1.02-1.47), older (OR = 1.20, CI = 1.09-1.33), less educated (OR = 1.64, CI = 1.30-2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39-2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61-0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders.
conclusionsCancer survivors' HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES-a potential mechanism for providing information and access to support-is an avenue for keeping this group engaged.
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