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

B.H. de Rooij, N.P.M. Ezendam, F. Mols, P. Vissers, M.S.Y. Thong, C.C.P. Vlooswijk, S. Oerlemans, O. Husson, N.J.E. Horevoorts, L.V. van der Poll-Franse

Research output: Contribution to journalArticleScientificpeer-review

16 Citations (Scopus)

Abstract

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
Original languageEnglish
Pages (from-to)3313–3324
JournalQuality of Life Research
Volume27
Issue number12
DOIs
Publication statusPublished - 2018

Keywords

  • Aged
  • Aged, 80 and over
  • Cancer Survivors/statistics & numerical data
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Reported Outcome Measures
  • Quality of Life
  • Registries
  • Surveys and Questionnaires
  • Survival Rate

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