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Published on: June 20, 2020
Prader-Willi Syndrome in children: Quality of life and caregiver burden
Christina Meade1, Ruth Martin1, Ann McCrann2
1Department of Nutrition and Dietetics, National Children's Hospital, Tallaght University Hospital, Dublin, Ireland.
Insights
Prader-Willi syndrome significantly impacts the quality of life for children and their families. Increased weight and age negatively affect psychosocial health, with older children experiencing a greater caregiver burden.
Area of Science:
- Pediatrics
- Genetics
- Quality of Life Research
Background:
- Prader-Willi syndrome is a complex genetic disorder requiring extensive lifelong care.
- The condition presents significant challenges impacting the daily lives of affected children and their families.
Purpose of the Study:
- To evaluate the quality of life (QoL) in children with Prader-Willi syndrome.
- To assess the burden experienced by caregivers of children with Prader-Willi syndrome.
Main Methods:
- A cohort of 44 children with Prader-Willi syndrome was invited from a tertiary referral center.
- Quality of life was measured using the PedsQL questionnaire and family impact modules.
- Caregiver burden was assessed using a dedicated questionnaire.
Main Results:
- Nineteen children participated, with a median age of 7.9 years.
- Increased weight and age were significantly associated with negative impacts on family functioning, psychosocial health, and social functioning.
- Caregivers of children over 12 years reported increased burden due to routine disruption and social restrictions.
Conclusions:
- Prader-Willi syndrome substantially diminishes the quality of life for both children and their families.
- Caregiver burden increases with the child's age, highlighting the need for targeted support strategies.
Abstract:
Prader-Willi syndrome is a complex condition requiring constant care and supervision of the affected child.
Aim:
To evaluate quality of life and caregiver burden in children with Prader-Willi syndrome.
Methods:
All children with Prader-Willi syndrome, attending a tertiary referral centre, were invited to participate (n = 44). Quality of life was evaluated using the PedsQL questionnaire. Family impact modules and parent proxy reports evaluated the impact on the quality of life of the child and family. Additional challenges were captured using a burden questionnaire.
Results:
Nineteen children participated. Median age was 7.9 years (0.6-18.1 years). Majority were female (n = 14, 74%). Median age at diagnosis was 2.5 weeks (range birth-2 years 8 months). Growth hormone treatment was in place for the majority (n = 14, 74%). Increased weight and age were identified as significantly impacting on family functioning and relationships. Parents perceived increased weight and age to have a significant negative impact on their child's psychosocial health and social functioning. Caregivers of children >12 years reported an increased burden of care. Disruption to routines, restriction of social activities and psychological difficulties were reported as increasing caregiver burden.
Conclusion:
Prader-Willi syndrome impacts significantly on quality of life for both the affected child and the family.
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