Health related quality of life in children with spina bifida in Uganda.

Background: Studies on health related quality of life (HRQOL) of children with disabilities in low income countries are limited.

Objective: To inform interventions for children with spina bifida in low income countries, HRQOL of children with spina bifida and siblings, predictors, relationships between HRQOL and parental stress in Uganda were examined.

Methods: Demographic, impairment, daily, social functioning data, and HRQOL using the KIDSCREEN-10 were collected from 39 children, 33 siblings, and 39 parents from a cohort of families of children with spina bifida. T-tests, correlations, analysis of variance and regression analysis were used to compare means between children with spina bifida and their siblings, understand relationships between variables, and identify predictors of HRQOL.

Results: Children with spina bifida (N = 39) had lower HRQOL compared to their siblings (N = 33) (t = -3.868, p < .001 parental; t = -3.248, p = .002 child ratings). Parents (N = 39) indicated higher parental stress for their child with spina bifida (t = 2.143, p = 0.036). HRQOL child outcomes were predicted by the presence of hydrocephalus (β = -.295, p = 0.013) for children with spina bifida, and daily functioning levels (β = .336, p = 0.038), and parental support (β = .357, p = 0.041) for siblings specifically. Parent rated HRQOL outcomes were predicted by parental distress (β = -.337, p = 0.008), incontinence (β = .423, p = 0.002), and daily functioning levels (β = .325, p = 0.016) for children with spina bifida.

Conclusions: To improve HRQOL investment in neurosurgical care, community based rehabilitation, incontinence management, and parental support are required. A combination of child friendly semi-structured and creative research methods are recommended to study HRQOL.