‟Health Related Quality of Life Assessment in Children with Down syndrome in Rwanda”

Abstract

Down syndrome is a genetic disease associated with delay in development, mental retardation and many congenital malformations which impact the quality of life of affected individuals. It is the most prevalent genetic disease in Rwanda however the associated problems and QOL of children with DS has not yet been studied. Objectives: The aim of this study is to examine the associated health problems and QOL of children with Down syndrome Methods: We conducted a qualitative study at CHUK/ clinical genetic outpatient department. We involved 20 participants. Data collection was done through semi structured interviews and thematic analysis was used. Results: All twenty participants were Rwandans and were from almost all provinces; only western province was not represented. Children mean age was 43 months. Caretakers mean age was 40.5 years. Four domains of quality of life were assessed including physical health in which delayed gross motor development was a common problem for all, emotions and socialization which were reported to be good for all, communication in which delayed speech was a common problem but no hearing impairment reported, daily living skills and school performance in which the parents reported inability to perform daily basic skills as performed by others of the same age and poor school performance. Conclusion: Apart from emotional function and socialization that all our respondents reported to be good, other domains of life are impaired in children with DS. Having impaired QOL implies a need for support in the involved domains. In Rwanda we have limited rehabilitation services to help these children. Our study forms a base of literature to expand the research and propose necessary support and services to assist children with Down syndrome and their families.