Assessment of proxy quality of life in children with cerebral palsy: a cross-sectional study

Introduction
Cerebral palsy (CP) is a non-progressive brain disorder in the developing fetal or infant brain that reduces the quality of life of children with cerebral palsy. Every child with CP may have individual experiences and problems that restrict participation in daily life activities. Quality of life (QOL) in children with CP needs to be measured by CP-specific questionnaire, Cerebral palsy – Quality of life (CP-QOL). CP-QOL questionnaire is being used for this purpose. Hence, we aimed to study the proxy QOL of children with CP from the primary caregivers.

Material and methods
One hundred and twenty-one primary caregivers (parent) of children with CP in the age group of 4 to 12 years were recruited by convenience sampling technique for the cross-sectional descriptive study. The parents of the children attending the Physiotherapy Outpatient Department, Occupational Therapy Outpatient Department, and Pediatric Outpatient Department were asked to complete the CP-QOL questionnaire. Collected data were analyzed and reported in frequency.

Results
CP-QOL questionnaire was completed by 121 primary caregivers of CP children. The overall QOL score obtained was 37.67 ±4.57. The seven domains of the questionnaire were taken into consideration, and QOL was found to be compromised. The domains of pain, access to services and impact of disability family health were severely compromised and less reliable when compared to other domains. The CP-QOL score among the children with CP in the age groups 4 to 6 years, 7 to 9 years, and 10 to 12 years were 37.44 ±12.52; 39.95 ±4.74 and 39.64 ±1.65, respectively.

Conclusions
The proxy QOL of children with CP was compromised, and the CP-QOL can be used to assess the QOL in children among the developing countries.