Taking patient reported outcomes centre stage in cancer research – why has it taken so long?

Peter Selby, Galina Velikova

Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires. When they are used, studies and cancer service developments are clearly constrained to focus on what matters to patients rather than, perhaps what matters to health service professionals or recent exciting but perhaps relatively unproven new technologies. There is good evidence that PROMs can contribute valuable inputs into the results of randomised controlled trials, clinical consultations and surveys of whole populations even at a national level. However, there is a great deal more work to be done on methodology and perhaps to change attitudes and cultures within the healthcare professions before they can deliver all of their potential to bring benefits to cancer patients. In response to Roger Wilson's challenge to place a patient-centred approach using Patient Reported Outcome Measures (PROMs) across all of the patient pathway, we have summarised progress over 40 years. We have critically evaluated what has been achieved to use patient reported outcomes in randomised controlled trials, in routine clinical practice and in population surveys. We conclude that there has been substantial scientific progress but that it has, arguably, been relatively slow. Barriers to placing PROMs centre stage in all of these areas of activity remain in methodology and to a degree in professional attitudes and culture. Active research programmes on methodology and closer working between healthcare professionals, cancer patients and patient advocates are the key requirements to speed up the use and application of PROMs and which should bring benefits to cancer patients and healthcare services.