Epidemiology of cerebral palsy among children in the remote Gorkha district of Nepal: findings from the Nepal cerebral palsy register

Abstract

Purpose

To describe the epidemiology of cerebral palsy (CP) among children in Gorkha, Nepal.

Methods

We established the first population-based register of children with CP aged <18 y in Gorkha, Nepal (i.e., Nepal CP Register). Children with suspected CP underwent detailed neurodevelopmental assessment by a multidisciplinary assessment team. Socio-demographic, etiology, motor severity, rehabilitation, and educational status were documented.

Results

Between January and October 2018, 182 children with confirmed CP were registered (mean (standard deviation (SD)) age: 10 years 1 months (4 years 10 months), 37.4% females). The majority (88.3%) had CP acquired pre- or perinatally. Mean (SD) age of CP diagnosis was four years five months. Mothers who did not receive any formal schooling had 4.5, 3.1, and 6.3 times higher odds of having inadequate antenatal care, homebirth, and unskilled birth attendants, respectively, when adjusted for other factors. Most children had spastic CP (77.5%) and Gross Motor Function Classification System level III-V (54.9%). Overall, 45.8% had never received rehabilitation services, 58.0% of school-aged children were not attending schools. The median age of receiving rehabilitation services was three years zero months.

Conclusions

The delayed diagnosis and clinical severity indicate the overall poor health status of children with CP in Nepal which could be improved by ensuring early diagnosis and intervention.

Implications for rehabilitation

• The first population-based cerebral palsy register in Nepal suggests diagnosis of CP is considerably delayed among children.

• The high burden of severe motor impairment and poor communication skill with limited access to timely rehabilitation among children with CP in Nepal is concerning.

• Capacity development of community-based health workers and mothers of children with CP could help implementing community-based programs for prevention and early diagnosis of CP, and to promote early intervention for children with CP in remote Gorkha, Nepal.

Keywords:

• Cerebral palsy (CP)
• epidemiology
• children
• disability
• risk factor
• Nepal
• register

Acknowledgements

We would like to express our heartfelt thanks to all caregivers and children for their valuable time and participation in the study activities. We would like to thank Dr Amrit Devkota from Gorkha District Hospital, Nepal, for his assistance with clinical assessment and data collection throughout the project period. We would also like to thank the research physicians of CSF Global, Dr. Ratul Ghose, Dr. Tasneem Karim, Dr. Manik Chandra Das, and Dr. Arifuzzaman Khan for their support with clinical assessment and data collection. Our deepest thanks go to the CSF Global team in Nepal for their tireless efforts in study implementation, and also for supporting the children with CP and their families with information and in accessing services, in addition to providing a strong referral system.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data used are available upon request to the corresponding author. These are not publicly available due to privacy/ethical restrictions.

Additional information

Funding

This project was funded by the Cerebral Palsy Alliance Research Foundation (PG10017) and internal funding from CSF Global in Bangladesh and Nepal. GK is supported by the NHMRC Investigator Grant (APP2009873). IJ is supported by the Cerebral Palsy Alliance Research Foundation Emerging Researcher Grant (ERG02021).