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Health-related quality of life in children and adolescents with spinal dysraphism: results from a Taiwanese sample

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Abstract

Purpose

This study was designed to investigate health-related quality of life (HRQL) in children and adolescents with spinal dysraphism and to determine the differences between the myelomeningocele (MMC) and lipomyelomeningocele (LMMC) groups.

Methods

Thirty-two patients (mean age, 13.2 years) with MMC and 28 patients (mean age, 11.3 years) with LMMC participated in this study. HRQL was measured using the Child Health Questionnaire-Parent Form 50 (CHQ-PF50). The CHQ-PF50 scores for the study participants were compared with those of a reference sample of healthy Taiwanese children. Outcomes for children with MMC were compared with those for children with LMMC. We also explored the relationships of the lesion level and associated medical problems with HRQL in these subjects.

Results

Patients with MMC had significantly lower scores on the physical and psychosocial aspects of CHQ-PF50 than did healthy children. Patients with LMMC had lower scores on some domains but had comparable psychosocial summary scores. Significant differences were noted between the MMC and LMMC groups for all subscales and both summary scores. Children with a higher lesion level had poor physical health (r = −0.52, P < 0.001) but not poor psychosocial health. The number of associated medical problems, indicating their severity, was related to both physical (r = −0.77, P < 0.001) and psychosocial health (r = −0.57, P < 0.001).

Conclusions

Children and adolescents with MMC have reduced HRQL compared with those with LMMC. Children and adolescents with more associated medical problems have the greatest risk of diminished physical and psychosocial well-being.

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Acknowledgments

The authors thank Ling-Chen Tai, MS for reviewing the statistical analysis. This work was supported by grant no. V100C-061 from Taipei Veterans General Hospital, Taipei, Taiwan.

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Authors and Affiliations

  1. Department of Physical Medicine and Rehabilitation, Taipei Veterans General Hospital, No. 201, Section 2, Shih-Pai Road, Beitou District, Taipei City, Taiwan, 11217, Republic of China

    Jia-Chi Wang, Chih-Jou Lai, Rai-Chi Chan & Tsui-Fen Yang

  2. Department of Surgery, Cheng Hsin General Hospital, Taipei, Taiwan

    Tai-Tong Wong

  3. Division of Pediatric Neurosurgery, Department of Neurology, Taipei Veterans General Hospital, Taipei, Taiwan

    Muh-Lii Liang & Hsin-Hung Chen

  4. School of Medicine, National Yang-Ming University, Taipei, Taiwan

    Tai-Tong Wong, Muh-Lii Liang & Hsin-Hung Chen

  5. Department of Physical Therapy and Assistive Technology, National Yang Ming University, Taipei, Taiwan

    Rai-Chi Chan & Tsui-Fen Yang

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  1. Jia-Chi Wang
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  2. Chih-Jou Lai
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  3. Tai-Tong Wong
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  4. Muh-Lii Liang
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  5. Hsin-Hung Chen
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  7. Tsui-Fen Yang
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Correspondence to Tsui-Fen Yang.

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Wang, JC., Lai, CJ., Wong, TT. et al. Health-related quality of life in children and adolescents with spinal dysraphism: results from a Taiwanese sample. Childs Nerv Syst 29, 1671–1679 (2013). https://doi.org/10.1007/s00381-013-2117-5

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  • DOI: https://doi.org/10.1007/s00381-013-2117-5

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