Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)
In 2009 we initiated the PROFILES registry for the study of the physical and psychosocial impact of cancer and its treatment. PROFILES enables data collection management; from inviting patients to participation in studies, to collecting patient-reported outcomes data via web-based or mailed questionnaires, and linking these data with clinical data. PROFILES contains a large web-based component and is linked directly to clinical data from the population-based Netherlands cancer registry.
PROFILES was built to increase the knowledge on the impact of cancer on people’s lives across the whole cancer continuum. The primary goal of studies that use the PROFILES registry are:
- psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes,
- to analyse mediating mechanisms to better understand the biological and behavioral factors associated with cancer treatment outcomes, and
- to evaluate physical and psychosocial care needs of cancer survivors.
Today we have evaluated patient reported outcomes (PRO’s) of more than 40.000 cancer survivors in 80 hospitals in the Netherlands, resulting >150 scientific publications.
The availability of a control cohort of approximately 2000 persons from the general population who complete the same basic questionnaire annually will provide the opportunity to estimate the unique impact of cancer, beyond that of normal aging and comorbidities.
With an NWO large investment grant (2016) we are now collecting novel data that includes biological markers, wearables, online food diaries and body composition; to investigate mechanisms of declining health after cancer.
Results of PROFILES studies will contribute to better care and aftercare for both patients and survivors.