The burden of colorectal cancer is high in Europe and still increasing. The disease and treatment can have profound impacts on the patientś quality of life (QoL), emphasizing the importance of measuring QoL. An important tool in this process is Patient Reported Outcome Measures (PROMs). The goal of this study is to give an overview on the use of PROMs throughout the colorectal cancer care pathway in Europe.
Studies were searched via Pubmed until end of April 2018 regarding the development, validation and use of PROMs in colorectal cancer , focusing on the whole care pathway, i.e., screening, diagnosis, treatment, rehabilitation, follow-up, and palliative care. Only studies conducted in Europe, with at least an abstract in English were included.
In total, 49 studies and 7 systematic reviews were analysed. Thirty-six studies evaluated PROMs in clinical trial settings, while 20 focused on screening and patient management. Most of the studies were conducted in the Netherlands (n = 13) and United Kingdom (n = 19). Concerning care processes, most studies focused on treatment – systemic therapy, surgery and radiotherapy - in both trials and patient management. There is a great variation in the PROMs instruments used, as well as in the domains included in them (physical function, symptoms, psychological distress, general QoL, financial aspects, patient satisfaction/experience and decision sharing). The most used standardised instrument was EORTC QoL C30, sometimes in combination with other colorectal cancer specific questionnaires. In almost all studies included, PROMs were assessed at pre-defined key moments: at least before the treatment, during the intervention and at three time points after the intervention (up to 12 months).
In Europe, the use and content of PROMs in colorectal cancer varies, but is still limited. Implementation of a core standardised set of PROMs would allow comparability of patient-perceived quality of care across Europe. Despite some current initiatives (e.g. ICHOM) more work is still needed. Incorporation of a requirement for the use of PROMs in quality assurance measures (e.g. European Initiative on Colorecatal Cancer) may increase patient centredness of the care standards and improve patient experience.
Clinical trial identification
Legal entity responsible for the study
Has not received any funding.
All authors have declared no conflicts of interest.