Quality of life of children with spina bifida in Kenya is not related to the degree of the spinal defects.

OBJECTIVES

To assess the relationship between the degree of symptoms and defects caused by spina bifida and the quality of life (QoL) of children with spina bifida in Kenya.

METHODS

Children with spina bifida at BethanyKids at Kijabe Hospital, at mobile clinics throughout Kenya and a control group of healthy children were interviewed regarding their QoL. The SEIQoL-DW was used as an instrument to measure the QoL. This instrument can transfer well across cultures by using open questions clustered in six domains chosen based on the study group responses. Symptoms and impairment caused by spina bifida were obtained from the medical files.

RESULTS

Sixty-nine per cent of 102 patients with spina bifida had a myelomeningocele, 59% had hydrocephalus, and of 49 incontinent children older than 2.5 years, 67% used clean intermittent catheterization. Quality of life of children was 65.1 on a scale from 0 to 100, compared to 78.0 in the healthy control group. Not one single determinant made a significant difference in the overall QoL. The most important domains were 'development' and 'self-actualization'. The lowest scores were found in the domain 'health and disease'.

CONCLUSION

This study showed no significant influence of the degree of defects of spina bifida on the QoL, but identified domains that can be targeted for improvement in children with spina bifida.