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 SurvivorsCancer 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.
Highlights
Electronic supplementary material The online version of this article contains supplementary material, which is available to authorized users.Patient-reported outcomes (PRO) are patients’ self-reports about the impacts of a health condition on functioning, symptoms, and health-related quality of life (HRQOL) as well as experiences of treatment and care
Participants who dropped out after the second, third, or fourth wave showed a steeper decline in global HRQOL and physical functioning and a steeper increase in depressive symptoms than full responders
Sensitivity analyses suggested this trend was driven by mortality, first wave dropouts still reported worse initial HRQOL than full responders, unrelated to mortality
Summary
Patient-reported outcomes (PRO) are patients’ self-reports about the impacts of a health condition on functioning, symptoms, and health-related quality of life (HRQOL) as well as experiences of treatment and care. PRO data can support the provision of patient-centred care by informing decisionmaking at the individual level, driving quality improvement at a system level, and determining factors that influence patient outcomes on a population level [1]. Missing data poses a challenge for PRO research, as it relates to attrition (i.e. when a participant drops out and is never observed again) [2]. Despite its implications for data quality, analysis, and interpretation, the mechanisms of attrition in populationbased PRO research are not well understood [2].
Sign-in/Register to view highlights & summary 
Published Version (
Free)
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call