How Important are Patient-Reported Outcomes in Pediatric Rheumatology?

In the first part of our 3-part feature on patient-reported outcome measures (PROMs), Rheumatology Network interviewed pediatric rheumatologist, Janet E McDonagh, MD, FRCP to discuss the importance of obtaining both the patient and parent perspective. McDonagh is the Clinical Senior lecturer in Pediatric and Adolescent Rheumatology at the University of Manchester.

Too often, the opinion of the patient is overlooked because the parent is given the PRO questionnaire. In previous studies, investigators discovered that 50% of patients and parents disagreed with a patient’s quality of life, with 25% overestimating disability and pain and 25% underestimating these measures. Unfortunately, the wider the discrepancy is, the higher the risk of mental health issues. McDonagh tries to minimize this issue by giving the questionnaires to both parent and child at the same time to eliminate the chance that the parent will fill out the form on behalf of the patient. This also allows her to obtain twice the perspectives.

Further, McDonagh calls for a change in the way that PRO questionnaires are created. “I think any patient-reported outcome questionnaire should be developed with young people first and foremost. It should not be developed by doctors or researchers. It needs to be done with young people, not just parents, because we need to be asking what matters to them. And what matters to young people doesn't always matter to parents,” McDonagh stated. “I've been involved in some other specialties. In hemophilia, they created a patient-reported outcome involving young people, which was great. Specifically with pediatric rheumatology, the child is the patient. The parent can fill out the forms that they want to fill out, but it might not align with the child. Both are important perspectives. They're not wrong, but it's just different perspectives.”