Outcomes that children with brain-related disorders and their parent-caregivers consider to be the most meaningful cover a wide range of aspects of functioning.
Involving these children and their parent-caregivers resulted in the identification of important outcomes that were not covered by professionals and the literature.
Parent-caregiver-related factors (coping, burden of care) and environmental factors (support, attitudes, and [health care] services) were identified as meaningful.
Meaningful outcomes in children and their caregivers with brain-related disorders (such a cerebral palsy, brain injury and genetic neurodevelopmental disorders) were identified using a online patient validation survey assessing salient outcomes. The survey was based on the integrated outcomes from the perspectives of families, health-care professionals and literature.
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