University Medical Center, Utrecht, The Netherlands.
Trop Med Int Health. 2011 Jan;16(1):30-6. doi: 10.1111/j.1365-3156.2010.02680.x. Epub 2010 Nov 10.
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.
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.
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'.
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.
评估肯尼亚脊髓脊膜膨出患儿的症状和缺陷程度与生活质量（QoL）之间的关系。
在肯尼亚 BethanyKids 医院 Kijabe 医院、流动诊所的脊髓脊膜膨出患儿以及健康对照组儿童接受 QoL 访谈。使用 SEIQoL-DW 作为测量 QoL 的工具。该工具通过使用基于研究组回答选择的六个领域的开放性问题聚类，可以很好地跨文化转移。脊髓脊膜膨出引起的症状和损伤从病历中获得。
102 例脊髓脊膜膨出患儿中，69%为脊膜脊髓膨出，59%有脑积水，49 例 2.5 岁以上的尿失禁患儿中，67%使用清洁间歇导尿。0 到 100 的评分中，患儿的生活质量为 65.1，而健康对照组为 78.0。没有一个单一的决定因素对整体 QoL 有显著影响。最重要的领域是“发展”和“自我实现”。得分最低的是“健康和疾病”领域。
本研究表明，脊髓脊膜膨出的缺陷程度对 QoL 没有显著影响，但确定了可以针对脊髓脊膜膨出患儿进行改善的领域。
