Integrating patient-reported outcomes into cancer care and registries  Feasibility, methods & attitudes

Cancer and its treatments often lead to physical, psychological, and social symptoms/problems that may affect cancer patients’/survivors’ functioning, quality of life, and treatment adherence. Clinician ratings of symptoms may not represent the patient’s experience, do not correlated highly with patients’ self-reports, and often under-estimate the severity of symptom prevalence and burden. For this reason, patient-reported outcomes (PROs) have become the gold standard for measuring more subjective outcomes in cancer care and research. PROs are reports of health status obtained directly from patients, without interpretation by a clinician, that can be collected via questionnaires, interviews, or other methods. Clinicians have begun to use PROs routinely in clinical practice to assess symptoms (e.g., pain, fatigue). This has been demonstrated to improve patient-provider communication, reduce symptom burden, and improve treatment adherence. Yet, little is known about the real-world use of clinical PROs outside of research settings. We report on new methods that build upon accreditation standards for distress screening to obtain data on real-world clinical PRO use.
Central cancer registries provide high-quality, population-based data on cancer incidence, survival, and care that inform cancer control/research in many countries. However, the absence of PRO data inhibits registries’ ability to fully describe the burden of cancer on population health. We report on a reproducible registry-based method for collecting PRO data around the time of treatment and cancer survivors’ views regarding sharing PRO data with central cancer registries. We discuss the implications of our results for integrating PROs into both routine clinical care and cancer registries.