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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.
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.
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.
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.
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- Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry
Belle H. de Rooij
Nicole P. M. Ezendam
Pauline A. J. Vissers
Melissa S. Y. Thong
Carla C. P. Vlooswijk
Nicole J. E. Horevoorts
Lonneke V. van de Poll-Franse
- Springer International Publishing
- Quality of Life Research
An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation - Official Journal of the International Society of Quality of Life Research
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649