Issue: July 2017 - Improving access to diabetes care
Section: Health delivery
SWEET: enhancing quality of care for children with diabetes worldwide
Diabetes is a lifelong condition that may be difficult to live with anywhere in the world, but there is a greater degree of difficulty associated with diabetes care and self-management in settings with fewer resources available. Currently, four out of five people affected by diabetes live in low- and middle-income countries.1 Although very little data is available on the presentation and frequency of diabetes in childhood in these countries, reports available suggest that children who develop diabetes may die before being diagnosed2 or survive only a few years after diagnosis from lack of access to insulin3,4. Programs such as IDF Life for a Child5 help provide insulin where it is needed; however, insulin is only part of the care required for children with diabetes.
SWEET is the acronym for “Better control in Paediatric and Adolescent diabetesS Working to crEate CEnTres of Reference,” a multinational initiative to improve diabetes care and outcomes in youth with all types of diabetes. SWEET activities include benchmarking of clinical care and outcomes and sharing of information and experience between participating centres. Benchmarking involves each centre providing data on children who are followed in their clinics on a central database twice per year. This information is used to generate regular reports that allow each diabetes centre to see how they compare to others. Through this process, participating centres can learn from each other to improve provision of care to their children and achieve the best possible outcome. As of February 2017, 50 paediatric diabetes centres from around the world are contributing data. Although the majority of centres working with SWEET are from Europe, the following developing countries are also included: India (two centres), Mali, Argentina, and Costa Rica.
The challenges of caring for diabetes in children and adolescent patients in developing countries are the same as in developed countries: achieving glycaemic goals to prevent complications and providing the best opportunity for a good quality of life. The difference between care in a developed country versus a developing country are barriers related to: socioeconomic problems; lack of accessibility to diabetes supplies and education; and inequity in the assistance of vulnerable groups.
The principal challenges related to diabetes access and outcomes are:
- shortage of available diabetes supplies;
- deficits in knowledge leading to preventable death from the acute complications of diabetes;
- scarcity of medication and medical care coverage resulting in inadequate diabetes control and increasing the risk of complications and shortened life expectancy;
- lack of diabetes education for families leading to deficient compliance with regular insulin doses and blood glucose monitoring, again contributing to increased risk of complications and shortened life expectancy;
- social stigma associated with diabetes resulting in children, adolescents and young adults hiding their condition from their social circle to avoid being denied access to school, work and later, to marriage.
In the last three decades, these issues have been addressed in higher income countries by providing sufficient resources for access to testing supplies or other, insulin and education for families and children with diabetes and through public awareness of diabetes. However, in developing countries, these issues remain significant challenges for individuals affected by diabetes.
Participation in SWEET for the centres in India, Mali, Argentina and Costa Rica led to the development of a local or regional electronic registry tracking the data of the population they serve for benchmarking. Participation in SWEET is also perceived as a means to develop or improve local standard protocols for the care of children with diabetes, support for care provider education, and promotion of the need for multidisciplinary approach to diabetes care. The following examples illustrate these benefits:
In Buenos Aires, Argentina, since joining SWEET in 2014, the number of children being treated with multiple daily insulin injections as per the international practice guidelines has significantly increased leading to a substantial improvement in the glycaemic targets in their population.
In Ahmedabad, Gujarat, and Belgaum, Karnataka, India, implementation of the registry led to standardization of patient medical appointments and frequency. This standardization has resulted in increased interactions with the diabetes care team, better understanding of diabetes by families and children, improved self-management care including more accurate insulin dosing and blood glucose monitoring, and a decrease in frequency of hospitalizations for acute diabetes complications.
In Bamako, Mali, prior to having data collected for SWEET, children would rarely attend regular medical visits or receive an HbA1c, a diagnostic blood test measured primarily to identify the three-month average plasma glucose concentration which is ideally given to children living with diabetes four times per year. Since being involved in SWEET, the frequency of medical visits and access to HbA1c testing has increased to twice per year.
All participants in SWEET share a common commitment to care for children who have developed diabetes. The centres from low-income countries show great initiative despite several barriers, challenges or difficulties. For these centres, involvement in SWEET is a significant advantage in helping providers and their patients achieve improvements in best practice and obtain further credibility and support from local health authorities. As described by one participant centre, SWEET’s benchmarking process provides a sense of healthy, positive competitiveness, thereby making each centre more productive, hardworking, efficient, and focused to produce the best possible results, regardless of its socioeconomic background. Participation from diverse paediatric diabetes centres provides a variety of valuable insights, perspectives, and opportunities that can be used to promote healthier lives and stronger futures for children with diabetes in low- and middle-income countries.
The SWEET study group is a multinational initiative to improve diabetes care and outcomes in youth with all types of diabetes.
Danièle Pacaud is a paediatric endocrinologist and professor at University of Calgary, Calgary, Canada.
Carmen S Mazza MD is a paediatrician specializing in diabetes and nutrition practicing in the Nutrition Department at Hospital de Pediatria JP Garrahan, Buenos Aires, Argentina.
Dhruvi Hasnani is an assistant diabetologist at the Diacare Diabetes Care & Hormone Clinic, Ahmedabad, India.
Erick Richmond is a paediatric endocrinologist at the National Children’s Hospital and professor at the University of Costa Rica.
Stéphane Besançon is biologist and nutritionist, and CEO of the international NGO Santé Diabète (www.santediabete.org).
Sujata M Jali is professor and Head of the Department of Pediatrics at the KLE University’s JNMC and KLES Hospital, Belgaum, India.
Jean-François Lemay is a developmental paediatrician and professor at University of Calgary, Calgary, Canada.
- International Diabetes Federation. IDF Diabetes Atlas, 7th edn. Brussels, Belgium: International Diabetes Federation, 2015. www.diabetesatlas.org
- Rwiza HT, Swai AB, McLarty DG. Failure to diagnose diabetic ketoacidosis in Tanzania. Diabet Med 1986; 3:181-3
- Sidibe, AT, HA Traore, IT Liman-Ali, et al. Juvenile diabetes in Mali: An 8-year prospective follow up (Article) [Le diabète juvenile au Mali]. Rev Franc Endocrinol Clin 1999; 40: 513-21.
- Beran, D, JS Yudkin, M. de Courten. Access to care for patients with insulin-requiring diabetes in developing countries: case studies of Mozambique and Zambia. Diabetes Care 2005; 28: 2136-40.
- IDF Life for a Child Programme. IDF Life for a Child Programme Annual Report 2014. https://www.lifeforachild.org/component/attachments/attachments.html?id=1007