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

Autor:	Heydenrijk-Kikkert MA; Erasmus MC, University Medical Center Rotterdam, Department of Rehabilitation Medicine, Rotterdam, the Netherlands.; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Pediatric Brain Center, Rotterdam, the Netherlands.; Rijndam Rehabilitation, Rotterdam, the Netherlands., Schmidt AKK; Erasmus MC, University Medical Center Rotterdam, Department of Rehabilitation Medicine, Rotterdam, the Netherlands., Pangalila R; Erasmus MC, University Medical Center Rotterdam, Department of Rehabilitation Medicine, Rotterdam, the Netherlands.; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Pediatric Brain Center, Rotterdam, the Netherlands.; Rijndam Rehabilitation, Rotterdam, the Netherlands., De Wit MY; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Pediatric Brain Center, Rotterdam, the Netherlands.; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Department of Pediatric Neurology and The ENCORE Expertise Center for Neurodevelopmental Disorders, Rotterdam, the Netherlands., van Haren NEM; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Pediatric Brain Center, Rotterdam, the Netherlands.; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Department of Child and Adolescent Psychiatry, Rotterdam, the Netherlands., Van Veelen MC; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Pediatric Brain Center, Rotterdam, the Netherlands.; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Department of Neurosurgery, Rotterdam, the Netherlands., Roebroeck ME; Erasmus MC, University Medical Center Rotterdam, Department of Rehabilitation Medicine, Rotterdam, the Netherlands.; Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Pediatric Brain Center, Rotterdam, the Netherlands.; Rijndam Rehabilitation, Rotterdam, the Netherlands.
Jazyk:	angličtina
Zdroj:	Developmental medicine and child neurology [Dev Med Child Neurol] 2023 Nov; Vol. 65 (11), pp. 1493-1500. Date of Electronic Publication: 2023 Apr 18.
DOI:	10.1111/dmcn.15610
Abstrakt:	Aim: To identify meaningful outcomes of children and their caregivers attending a paediatric brain centre. Method: We 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. Results: We 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. Interpretation: Children 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 This Paper Adds: 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. (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)
Databáze:	MEDLINE
Externí odkaz:	Plný text