SPECIAL ISSUE: THE 50th ANNIVERSARY OF THE NATIONAL CANCER ACT OF 1971 - MINI- REVIEW - USING PATIENT-REPORTED OUTCOMES IN CLINICAL PRACTICE – A CENTRAL PART OF FUTURE PRECISION MEDICINE

Abstract

Patient-reported outcomes (PRO) have been found to be a strong predictor of all- cause mortality and when included in trials lead to better evaluation of treatment effectiveness. Clinical use of PROs is also valuable for management of disease, shared decision making and assessment of real-world treatment effects. To date, most centers collect PRO data as a clinical routine, with the purpose to improve the quality of delivered care to patients before, during and after treatment for cancer. However, to improve survival and quality of life for the individual patient, clinicians must evaluate the PRO results and intervene if scores are alarming, not only collect PRO data for quality evaluations and national registries. Changing clinical practice is not without problems and some issues remain to be solved. For example, we need to shift focus from what clinicians and researchers need – to what are the challenges for the individual patient and can be used in every day clinical practice. Tools for reporting treatment effects on patients’ daily life, are only ef cient if clinicians act on the results. Further, quality of life data covering all cancer diseases through the whole care pathway generating large scale databases would be helpful in guiding treatments on what help patients live meaningful lives, and support patients in making informed decisions regarding treatment options. Feasible and safe methods for collecting, storing, analysing and reporting PROs in real-time are under development and will hopefully not be a barrier in the future. To conclude, to improve survival and improve quality of life of cancer patients, we need to regard self-reported data with equal importance as other more objective measures and routinely include these in cancer treatment. Focus of symptom management should be included in precision medicine in the future.

Keywords

• quality of life
• clinical practice
• cancer care
• patient perspective
• symptom management
• self-report