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Quality of life in children operated for spina bifida; low- and middle-income country perspective

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Abstract

Introduction

Spina bifida is a potentially disabling congenital condition and affects the quality of life (QOL). We aimed to assess clinical outcomes and QOL in children who underwent spina bifida repair at our hospital.

Methods

This was a retrospective cohort study on children who underwent spina bifida repair at our hospital over 10 years. Phone calls were made to parents of the children, and the Health Utility Index Mark 3 (HUI 3) score was used to assess QoL, and degree of disability. Demographics and clinical data were obtained from the medical chart review. Statistical analysis was done using SPSS (version 21).

Results

Eighty children with a median age of 1.1 months (IQR 0.03–2.0) at the time of presentation, were included in this study. The mean follow-up period was 6.04 ± 2.54 years and the median HUI-3 score was 0.64 (IQR: 0.40 – 0.96) on a scale of 0 (dead) to 1 (perfectly healthy). Based on the severity of disability, 12 (23.1%) children had mild disability, 4 (7.7%) had moderate disability, and 23 (44.2%) had severe disability. Factors including a leaking spina bifida and paraplegia at presentation; radiological findings of hydrocephalus and Chiari malformation, were associated with a significantly low QOL. Children who required CSF diversion (EVD/ VP shunt) during the repair or at a later stage also had significantly low QOL.

Conclusion

In LMIC, children with myelomeningocele (MMC) born with lower limb weakness, hydrocephalus, Chiari malformation, and those presenting with leaking MMC, have a significantly low QoL at a mean follow-up of 6 years.

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Availability of data and material

The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

QoL:

Quality of Life

LMIC:

Low- and middle-income countries

HUI 3:

Health Utility Index Mark 3

NTDs:

Neural tube defects

MMC:

Myelomeningocele

SE:

Standard error

CI:

Confidence interval

HUI:

Health Utilities Index

CHQ-PF-50:

Child Health Questionnaire Parent form 50

ETV:

Endoscopic third ventriculostomy

VAD:

Ventricular access device

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Authors and Affiliations

  1. Dean’s Clinical Research Program, Aga Khan University, Karachi, Pakistan

    Mujtaba Khalil, Zara Shah & Hassaan Musood

  2. Section of Neurosurgery, Department of Surgery, Aga Khan University Hospital, 74800, Karachi, Pakistan

    Saqib Kamran Bakhshi & Muhammad Shahzad Shamim

  3. Aga Khan University, Karachi, Pakistan

    Faiza Urooj & Shilpa Golani

  4. Department of Surgery, Aga Khan University, Karachi, Pakistan

    Nida Zahid

  5. Department of Neurological Surgery, Vanderbilt University Medical Center, Nashville, TN, USA

    Michael Christopher Dewan

Authors
  1. Mujtaba Khalil
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  2. Saqib Kamran Bakhshi
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  4. Faiza Urooj
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Contributions

Mujtaba Khalil, Saqib Kamran Bakhshi and Zara Shah conceived and designed the project, and wrote the manuscript. Shilpa Golani and Hassaan Musood collected data. Faiza Urooj and Nida Zahid performed the analysis. Michael Christopher Dewan and Muhammad Shahzad Shamim reviewed the manuscript.

Corresponding author

Correspondence to Muhammad Shahzad Shamim.

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The study has been approved by the institutional ethics research committee at Aga Khan University Hospital.

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Khalil, M., Bakhshi, S.K., Shah, Z. et al. Quality of life in children operated for spina bifida; low- and middle-income country perspective. Childs Nerv Syst 39, 3155–3161 (2023). https://doi.org/10.1007/s00381-023-05993-2

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  • DOI: https://doi.org/10.1007/s00381-023-05993-2

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