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Published on: February 16, 2011
Meaningful outcomes for children and their caregivers attending a paediatric brain centre
Myrna A Heydenrijk-Kikkert1,2,3, Ann Katrin K Schmidt1, Robert Pangalila1,2,3
1Erasmus MC, University Medical Center Rotterdam, Department of Rehabilitation Medicine, Rotterdam, the Netherlands.
Insights
Children and caregivers identified key outcomes for pediatric brain disorders, highlighting emotional well-being, quality of life, and environmental factors. These findings are crucial for improving care and support for children with neurodisability.
Area of Science:
- Pediatric Neurology
- Rehabilitation Medicine
- Health Outcomes Research
Background:
- Children with brain-related disorders require comprehensive outcome assessments.
- Existing outcome sets may not fully capture the perspectives of patients and caregivers.
- Identifying meaningful outcomes is essential for tailoring interventions and improving quality of life.
Purpose of the Study:
- To identify meaningful health and functioning outcomes for children with brain-related disorders.
- To incorporate the perspectives of children, caregivers, and healthcare professionals.
- To prioritize outcomes using a validated survey and the International Classification of Functioning, Disability, and Health (ICF) framework.
Main Methods:
- Compiled a comprehensive list of outcomes from multiple sources.
- Categorized outcomes using the ICF: Children and Youth version.
- Conducted a patient validation survey with children and parent-caregivers to prioritize outcomes.
- Defined meaningful outcomes as those ranked 'very important' by at least 70% of participants.
Main Results:
- Identified 104 initial outcomes, with 59 included in the survey.
- Prioritized 27 meaningful outcomes covering emotional well-being, quality of life, functioning, and activities.
- Newly identified outcomes included parent-caregiver concerns and environmental factors.
- Survey respondents included children, caregivers, and parent-caregiver dyads.
Conclusions:
- Meaningful outcomes for children with brain-related disorders encompass a broad range of health and functioning aspects.
- Involving children and parent-caregivers identified crucial outcomes not previously recognized by professionals or literature.
- Proposed outcomes, including caregiver and environmental factors, should be integrated into future assessment sets for children with neurodisability.
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.
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