Epidemiology of cerebral palsy in Sumba Island, Indonesia

Abstract

LMICs Low-and middle-income countries MACS Manual Ability Classification System AIM To define the epidemiology, clinical characteristics, and rehabilitation status of children with cerebral palsy (CP) in Sumba Island, Indonesia. METHOD A community-based key informant method survey among children (aged <18y) with CP was conducted between March and August 2017. Children with suspected CP underwent detailed neurodevelopmental assessment by a multidisciplinary medical team. Sociodemographic characteristics, aetiology, motor type, motor severity, associated impairments, educational, and rehabilitation status were documented. RESULTS There were 130 children with clinically confirmed CP. The mean age at assessment was 8 years 11 months and 43.8% (n=57) of the children were female. The mean age at CP diagnosis was 6 years 5 months. Of these children, 46.9% (n=61) had post-neonatally acquired CP, most frequently because of vaccine-preventable infectious encephalopathy (73.8%, n=45). In total, 80.8% (n=105) had a predominantly spastic motor type of CP and 83.8% (n=109) were classified in Gross Motor Functional Classification System levels III to V. A total of 77.7% (n=101) had at least one associated impairment (speech 77.5%, intellectual 29.2%, visual 13.8%, hearing 20.0%, and epilepsy 13.5%). And 66.2% (n=86) had never received rehabilitation services. INTERPRETATION Post-neonatally acquired CP was common in this setting. Addressing preventable post-neonatally acquired risk factors for CP should be a public health priority. Earlier identification and diagnosis of CP would also provide new opportunities for early intervention and targeted rehabilitation services.

New Ethical Issues in Cerebral Palsy

“…Whereas, 85% of disabled children are estimated to live in low-and middleincome countries (LMIC), <5% of them have access to basic rehabilitative and support services, and they are at higher risk for discrimination, neglect, and abuse. Primary and secondary prevention strategies for cerebral palsy are absent or insufficient (24), and the needs of most children with cerebral palsy, particularly those in rural settings, are not met, as illustrated by low school attendance, careseeking, and access to assistive devices (25,26). Lack of stimulation and rehabilitation likely hamper self-care skills, communication, and mobility.…”

Key informants in socio‐epidemiology: advantages and pitfalls

“…For some conditions, such as epilepsy, it has also been shown that parents may hide severely affected children to avoid stigma. 2,3 In such cases, children may be severely neglected, malnourished, and even sexually abused.…”

“…The key informant method was originally developed in anthropology to gain in‐depth insight into particular social contexts by working with locals who have the ability to explain and ‘translate’ social phenomena, cultural values, and behaviours 1 . This method has been adapted for epidemiological surveys as outlined by Jahan et al and is certainly attractive for population based studies as it relies on the knowledge and networks of local people 2 . Unfortunately, few details are provided on the training of the key informants.…”

“…being able to address a child’s physical and developmental needs), it is also psychological (how to shoulder cultural beliefs and local aetiologies regarding the cause of the condition and how to pre‐empt avoidance behaviour resulting from stigma). For some conditions, such as epilepsy, it has also been shown that parents may hide severely affected children to avoid stigma 2,3 . In such cases, children may be severely neglected, malnourished, and even sexually abused.…”

“…1 This method has been adapted for epidemiological surveys as outlined by Jahan et al and is certainly attractive for population based studies as it relies on the knowledge and networks of local people. 2 Unfortunately, few details are provided on the training of the key informants. Of course good communication skills with locals are important, as well as being able to identify particular individuals with clinical symptoms or characteristics at community levelas is the case when using socioanthropological and community-based approaches in epidemiology.…”