Exploring the impact of diabetes in Sudan : out-of-pocket expenditure and social consequences of diabetes on patients and their families

Abstract: Diabetes mellitus in Sudan is a growing health problem in all socio-economic classes. The natural history of the disease is associated with poor of glycaemic control, a high prevalence of complications and a low quality of life. Objectives: The studies aimed to evaluate the social and economic burden and impact of diabetes. The direct costs and intermediate benefits of attaining good glycaemic control were estimated, and specifically the contribution by adult patients with type 2 diabetes to manage their disease without reported chronic complications, and further to describe and analyse health-related quality of life, compared to a matched control group of people without diabetes. Design and methods: Four cross-sectional studies using structured questionnaires were conducted in Sudan among parents of 147 children with type 1 diabetes and 822 adult patients with type 2 diabetes. Data on family and patient incomes, cost of diabetes care and metabolic control of the patients, was also obtained, with glycosylated haemoglobin A1c (HbA1c) as determining parameter. Subsequently, another 375 people with diabetes were compared with 375 controls using data on out-of-pocket medical expenses and social impact. The Health Utility Index was used to assess health-related quality of life. Results: The median annual expenditure of diabetes care during childhood was USD 283, of which 36% was spent on insulin. The direct median cost of diabetes care for type 2 adult diabetes patients was USD 175 per year. These costs represent 23% and 9% of incomes of the families of the children with diabetes and of adult patients, respectively. More than half of the income of adult patients was contributed by the spouse or siblings. The median total annual medical expenditure was fourfold higher among people with diabetes, compared to those without diabetes (USD579 vs USD148, respectively). Moreover, those with diabetes were significantly more likely to suffer from serious comorbidities, and reported a higher proportion of personal adverse social effects, such as being prevented from doing paid work or participation in education, both for themselves and their families. Recall of levels of blood glucose monitoring indicated poor glycaemic control in 86% of children with diabetes. HbA1c was at unsatisfactory levels in 77% of adult patients. Patients attending private clinics had both higher income and higher costs than those attending public clinics. However, both groups had poor glycaemic control, which may reflect the low direct costs and the minimal care given to all patients with diabetes. Both self-rated health and the Health Utilities Index were lower in people with diabetes, compared with those without diabetes, and were associated principally with pain, visual impairment and negative emotions. Conclusions and recommendations: These studies have emphasized the intensity of the economic burden on Sudanese patients with diabetes. This economic burden has generally not been translated into optimum diabetes care, and can be considered as a depletion of family resources and the consequences of an inefficient healthcare system. Patients with diabetes and their families pay a considerable part of their income to maintain health, and in return they receive insufficient care. The implications for health policy are that primary care services should be supported so that patients attain better diabetes control, and that the economic burden on patients with diabetes must be alleviated. Evidence-based programs for diabetes management and prevention in low-resource communities should be developed. Future research is needed to gain a greater understanding both of how families cope, and of efficient mechanisms to improve services in a cost-effective way.