It doesn't stop at validation: patient reported outcome measures require ongoing and iterative development

Patient reported outcomes (PROs) are a pillar of modern-day patient-centered care and clinical trials. PROs complement clinical information with the patient's own report about their experiences of health, without influence or interpretation by other people. However, choosing an appropriate PRO measure from the many available remains challenging for clinicians and researchers. One of the common pitfalls in instrument selection is that the instrument is often developed with a different patient population than the group being cared for or researched. This difference can result in salient items of importance to the patients, being under-reported or missed altogether. We highlight, through the reporting of some of our own data, that PRO instrument development does not stop with a validation study and we provide suggestions for future research for further improvement in this space.

Automated summary

Patient reported outcomes (PROs) are crucial in modern patient-centered care and clinical trials, providing valuable information about patients' experiences of health. However, selecting an appropriate PRO measure remains challenging for clinicians and researchers, as using instruments developed for different patient populations may lead to under-reporting or missing important items. Ongoing research and improvements are necessary to enhance the development and selection of PRO instruments.