Meaningful outcomes for children and their caregivers attending a paediatric brain centre

Abstract

AimTo identify meaningful outcomes of children and their caregivers attending a paediatric brain centre.MethodWe compiled a long list of outcomes of health and functioning of children with brain‐related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets. An aggregated list was categorized using the International Classification of Functioning, Disability, and Health: Children and Youth version in a patient validation survey for children and parent‐caregivers to prioritize outcomes. Outcomes were considered meaningful when ranked ‘very important’ by 70% or more of the participants.ResultsWe identified 104 outcomes from the three perspectives. After categorizing, 59 outcomes were included in the survey. Thirty‐three surveys were completed by children (n = 4), caregivers (n = 24), and parent‐caregivers together with their child (n = 5). Respondents prioritized 27 meaningful outcomes covering various aspects of health and functioning: emotional well‐being, quality of life, mental and sensory functions, pain, physical health, and activities (communication, mobility, self‐care, interpersonal relationships). Parent‐caregiver concerns and environmental factors were newly identified outcomes.InterpretationChildren and parent‐caregivers identified meaningful outcomes covering various aspects of health and functioning, including caregiver concerns and environmental factors. We propose including those in future outcome sets for children with neurodisability.

What outcomes do disabled children and their caregivers value most?

“…Interesting, if not surprisingly, many of the desired outcomes prioritized in Heydenrijk‐Kikkert et al's study reflect the outcomes my parents and I wanted several years ago 2 . Priority outcomes that connect to me and my experience include:…”