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Self-perceived health among children with spina bifida in the West Bank: a cross-sectional study
Maha Sudki Nahal1, Åsa B Axelsson2, Asma Imam3
1Department of Nursing, Al-Quds University, Abu Dies Campus, Jerusalem, State of Palestine.
Insights
Children with spina bifida report lower health-related quality of life, particularly in social functioning. Higher physical disability levels correlate with poorer self-perceived health in these children.
Area of Science:
- Pediatric Health
- Quality of Life Research
- Disability Studies
Background:
- Spina bifida presents significant physical challenges for children and their families.
- Health-related quality of life (HRQOL) in affected children is often assessed via proxy reports.
- Self-perceived health in children with spina bifida remains under-measured.
Purpose of the Study:
- To measure self-perceived health in children with spina bifida in the West Bank.
- To compare self-perceived health with a healthy reference group from the same region.
- To examine the association between self-perceived health and disability level in spina bifida.
Main Methods:
- A cross-sectional study involving 200 children (50 with spina bifida, 150 healthy) aged 8-12 years.
- Utilized the Paediatric Quality of Life Inventory (PedsQL) for health-related quality of life assessment.
- Disability in spina bifida was categorized by impairment in mobility, bowel/bladder function, and hydrocephalus.
Main Results:
- Children with spina bifida reported significantly lower PedsQL scores (mean 45.5) compared to healthy children (mean 80.0).
- Social functioning showed the lowest scores among children with spina bifida (mean 30.5).
- Significant inverse associations were found between self-perceived health and mobility impairment (r=-0.65) and hydrocephalus (r=-0.53).
Conclusions:
- Findings highlight the critical need for social support and rehabilitation services for children with spina bifida.
- Increased community awareness and education for healthcare providers and families are essential.
- Addressing the unique HRQOL challenges faced by children with spina bifida is crucial for improving well-being.
Background:
Children born with spina bifida endure constant physical disability, which is challenging for themselves and their families. To date, the impact of spina bifida on the health-related quality of life (HRQOL; eg, physical, psychological, and social wellbeing) of these children has been assessed mainly through parent proxy reports, and self-perceived health among these children is rarely measured. This study aimed to measure self-perceived health in children with spina bifida in the West Bank, to compare this with that in a healthy reference group also from the West Bank, and to assess the potential association between self-perceived health and the level of disability in children with spina bifida.
Methods:
A cross-sectional study was conducted in the West Bank. The Paediatric Quality of Life Inventory (PedsQL) was administered to a convenience sample of 200 children aged 8-12 years, of whom 50 have spina bifida and 150 are healthy. For the children with spina bifida, their disability was categorised and ranked according to four aspects of impairment (mobility, bowel function, bladder function, and hydrocephaly). Data were analysed with SPSS version 24. Difference in PedsQL scores between the two groups of children was tested with the Mann-Whitney U-test. The Spearman's rank correlation coefficient was used to evaluate the association between the level of physical impairment in children with spina bifida and their self-perceived health. Written informed consent was obtained from the children's parents. The children's verbal assent was also obtained, and their right to withdraw from the study at any time was emphasised.
Findings:
Children with spina bifida had lower overall PedsQL scores (mean 45·5, SD 14.5) than those reported by the reference group of healthy children (mean 80·0, SD 12·8). For children with spina bifida, social functioning had the lowest mean score (30·5, SD 20·8), followed by physical functioning (37·5, SD 16.6), emotional functioning (56·0, SD 17·2), and school functioning (62·6, SD 17.8), whereas the range for all of the PedsQL scores in the reference group was 71·7-84·5. The results demonstrate significant inverse associations between self-perceived health (overall PedsQL score) in children with spina bifida and both the level of mobility impairment (rs=-0·65, p<0·0001) and the presence of hydrocephalus (rs=-0·53, p<0·0001). A weak inverse association was found between self-perceived health and both bladder and bowel dysfunction. For both groups, no associations were found between demographic characteristics (age, gender, type of settlement of residence [city, village, camp]) and self-perceived health.
Interpretation:
The findings provide insights into the importance of social support and rehabilitation services for children with spina bifida in the occupied Palestinian territory. In particular, community awareness, and education of health care providers and family members, may be important.
Funding:
None.
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