Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
Malcolm McNeillSamantha NoyekEshetu EngedaNora FayedPublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2020)
Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.