Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry

• Published in: Quality of life research Vol. 27; no. 12; pp. 3313 - 3324
• Main Authors: de Rooij, Belle H., Ezendam, Nicole P.M., Mols, Floortje, Vissers, Pauline A. J., Thong, Melissa S. Y., Vlooswijk, Carla C. P., Oerlemans, Simone, Husson, Olga, Horevoorts, Nicole J. E., van de Poll-Franse, Lonneke V.
• Format: Journal Article
• Language: English
• Published: Cham Springer 01.12.2018; Springer International Publishing; Springer Nature B.V
• Subjects: Aged; Aged, 80 and over; Cancer; Cancer Survivors - statistics & numerical data; Female; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Participation; Patient Reported Outcome Measures; POPULATION BASED STUDIES; Public Health; Quality of Life; Quality of Life Research; Registries; Sociodemographics; Sociology; Surveys and Questionnaires; Survival Rate; Netherlands; Cancer survivors; Patient-reported outcomes; Non-response bias; Non-participation; Quality of life
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-018-1979-0

Purpose The '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. Methods Between 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. Results Participants 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. Conclusions Cancer 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.