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脊髓脊膜膨出患儿的健康相关生活质量和活动能力:瑞典人群研究

Health-related quality of life and ambulation in children with myelomeningocele in a Swedish population.

机构信息

Karolinska Institutet, Department of Women's and Children's Health, Stockholm, Sweden.

出版信息

Acta Paediatr. 2012 Sep;101(9):953-6. doi: 10.1111/j.1651-2227.2012.02742.x. Epub 2012 Jun 19.

Abstract

AIM

The aim was to study health-related quality of life (HRQL) in Swedish children with myelomeningocele (MMC) with respect to ambulatory function.

METHODS

A physical examination of the lower limbs was performed, and occurrence of orthopaedic deformities and shunted hydrocephalus was documented. A questionnaire on general health-related quality of life Child Health Questionnaire-50 Parent Form (CHQ-PF50) was answered by the parents of 62 children, mean age 12.5 (3.1) years.

RESULTS

The non-ambulatory children had significantly more frequent spasticity in the lower limbs, more often joint contractures as well as hip dislocation or spine deformity compared with ambulating patients. Thirty-two per cent of the ambulators managed without wheelchair use. All non-ambulators were wheelchair users, of which 60% used both a manual and a powered wheelchair. The children with MMC perceived significantly lower HRQL of all subscales of CHQ compared with the healthy control group. Physical function was significantly higher in ambulatory patients, PF = 57.1 compared with 22.2 for non-ambulatory patients.

CONCLUSION

A Swedish population of children with MMC perceived lower HRQL compared with healthy children, but similar HRQL irrespective of ambulatory function except for the physical domain was reported.

摘要

目的

研究伴有下肢运动功能障碍的脊髓脊膜膨出(MMC)瑞典儿童的健康相关生活质量(HRQL)。

方法

对下肢进行体格检查,记录是否存在骨科畸形和分流性脑积水。62 名儿童的家长填写了一般健康相关生活质量儿童健康问卷 50 项父母简表(CHQ-PF50)。儿童的平均年龄为 12.5(3.1)岁。

结果

与可步行患儿相比,非步行患儿下肢痉挛更为常见,关节挛缩、髋关节脱位或脊柱畸形更为常见。32%的可步行患儿无需使用轮椅。所有非步行患儿均使用轮椅,其中 60%的患儿同时使用手动和电动轮椅。与健康对照组相比,MMC 患儿的 CHQ 所有子量表的 HRQL 显著降低。与非步行患儿的 22.2 相比,可步行患儿的生理功能显著更高,PF 为 57.1。

结论

与健康儿童相比,瑞典 MMC 患儿的 HRQL 较低,但除生理领域外,报告的 HRQL 与步行功能无关。

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