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Health-related quality of life in paediatric spina bifida
P L Thong1, S W Wong2, M R Abdul Manaf3
1Universiti Putra Malaysia, Faculty of Medicine and Health Sciences, Department of Paediatrics, Serdang, Selangor, Malaysia. t_puiling@upm.edu.my.
Insights
Spina bifida significantly impacts children
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Public Health
Background:
- Spina bifida (SB) affects 0.43 per 1,000 live births in Malaysia.
- Despite improved management, SB significantly impacts patient development and health.
- Quality of Life (QOL) is a crucial measure in current SB patient care strategies.
Purpose of the Study:
- To investigate factors influencing Quality of Life (QOL) in Malaysian children with spina bifida.
- To identify socio-demographic and clinical determinants of QOL in this population.
Main Methods:
- Prospective, cross-sectional study of 54 children (5-20 years) with spina bifida.
- Validated Parkin QOL questionnaire used for data collection.
- Univariate and multivariate analyses performed to determine QOL predictors.
Main Results:
- Lower QOL scores were associated with neurogenic bowel (p=0.003), neurogenic bladder (p=0.041), shunt use (p=0.044), and non-ambulatory status (p=0.007).
- Being the only child in the family also correlated with lower QOL (p=0.037).
- Multivariate analysis indicated neurogenic bowel (β=0.375) and being an only child (β=0.250) significantly explained QOL variance.
Conclusions:
- Neurogenic bowel emerged as the most impactful clinical factor affecting QOL in spina bifida.
- Being an only child was the sole socio-demographic factor linked to reduced QOL.
- Comprehensive patient management must address both clinical and socio-demographic factors impacting QOL.
Introduction:
The average incidence of spina bifida (SB) in Malaysia is 0.43 among 1,000 live births. The burden of the disease and its impact on the overall development and health though tremendously improved, remains significant. Therefore, current patient management strategies must include quality of life (QOL) measures.
Methods:
This was a prospective, cross-sectional study on spina bifida children aged 5-20 years, attending the paediatric spina bifida clinics of Universiti Kebangsaan Malaysia Medical Centre Kuala Lumpur and Hospital Tuanku Jaanku Seremban. Scores were obtained using the validated disease specific Parkin QOL questionnaire. Univariate and multivariate analysis were used to investigate factors that were determinants for these outcomes. Results were expressed as beta coefficient and 95% confidence intervals (95%CI).
Results:
A total of 54 children and adolescents aged between 5-20 years completed the questionnaires. Presence of neurogenic bowel (p=0.003), neurogenic bladder (p=0.041), shunt (p=0.044), non-ambulators (p=0.007) and being the only child in the family (p=0.037) were associated with lower QOL scores. Multivariate analysis showed presence of neurogenic bowel (β=0.375, 95%CI: 0.00, 0.15) and being the only child in the family (β=0.250, 95%CI: 0.04, 0.17) explained 22.1% of the variance in the QOL mean percentage scores.
Conclusion:
Being a single child in the family was the only socio-demographic variable associated with lower QOL scores. Although several clinical factors appeared to contribute significantly to QOL in spina bifida children, the presence of neurogenic bowel had the greatest impact.
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