Meaningful outcomes for children and their caregivers attending a paediatric brain centre.
Dev Med Child Neurol
; 65(11): 1493-1500, 2023 11.
Article
en En
| MEDLINE
| ID: mdl-37072934
ABSTRACT
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.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Contexto en salud:
1_ASSA2030
Problema de salud:
1_recursos_humanos_saude
Asunto principal:
Cuidadores
/
Niños con Discapacidad
Tipo de estudio:
Prognostic_studies
Aspecto:
Patient_preference
Límite:
Adolescent
/
Child
/
Humans
Idioma:
En
Revista:
Dev Med Child Neurol
Año:
2023
Tipo del documento:
Article
País de afiliación:
Países Bajos