ESPE Yearbook of Paediatric Endocrinology

julia.vonoettingen@mcgill.ca Can J Diabetes 2022: 46; 32e39. doi: 10.1016/j.jcjd.2021.04.010

Brief Summary: This validation study and survey showed that the Diabetes Quality of Life for Youth (DQOLY) questionnaire and the EuroQol Visual Analogue Scale (EQ-VAS) are valid measures of Health-Related Quality of Life in Haitian youth with type 1 diabetes (T1D).

Tools used for the assessment of the health-related quality of life (HRQOL) in children and adolescents with diabetes are commonly developed in high-income countries. However, it is also important to assess HRQOL in countries where social characteristics differ markedly from those in high-income countries. This is the case with Haiti, one of the poorest countries in the world. In this study, 20% of patient’s parents were not alive, 23% were unable to read or write, and over half did not have a higher than elementary school education. This study validates existing tools, shows that the HRQOL is poor in youth with diabetes in Haiti, and poorer compared to similar studies performed in higher-income countries. Interestingly, metabolic control of diabetes, which is very poor in Haiti, was not a factor in their lower HRQOL. Instead, older age, female sex, and lower socio-economic status were associated with lower HRQOL. One hypothesis might be that the consequences of poor metabolic control are a long-term issue, while QOL reflects immediate concerns, such as poverty and being female. Indeed, other studies have reported a variety of issues perceived by girls with diabetes, such as being a burden on their families, stigma of diabetes care and worries about diabetes affecting their ability to go to school, find a job, get married and bear children. These factors were not studied here but may well exist in Haiti and further emphasize the need for a better, holistic approach to diabetes in Haiti.