A survey on death in children with severe cerebral palsy in an orphanage in Cambodia

Abstract

Introduction

  Severe cerebral palsy has been known to increase the risk of death in one’s life. This study aimed to discuss issues of care for cerebral palsy, based on a survey about the age and the causes of death in children with severe cerebral palsy at the Cambodian national orphanage in 2003-2019.

Methods

  We included 13 children with severe cerebral palsy who were admitted to the orphanage in 2003. The severity of their disability was classified using Gross Motor Function Classification System (GMFCS), Eating and Drinking Ability Classification System (EDACS), and the overall disability score (DISAB score). Death profiles were obtained from the orphanage records and by interviewing staff in 2019. The 20-year survival rate was analyzed using the Kaplan-Meier method with the time of birth as the enrollment.

Results

  The age of children was 2-13 (median 5) years in 2003. Of these, 11 were classified into level V in GMFCS, and nine of them were severely handicapped with a DISAB score of ≥ 9 and had EDACS III-IV dysphagia. The survival curve linearly decreased at the age of 9-18 years, and all children with a DISAB score of ≥ 9 died by the age of 18 years. The 20-year survival rate from the time of birth was 23% and median survival time was 14 years. The most common death profile was “a gradual loss of appetite, weight loss, and death.” Eating ability of all three survivors over the age of 20 was relatively high.

Conclusions

  Based on the death profiles, the main cause of death was severe malnutrition caused by dysphagia and the accompanying weakness, heart failure, hypoglycemia, etc. Individual nutritional management and approaches for dysphagia are important for improving the survival of children with cerebral palsy in the Cambodian orphanage.