Changing Diabetes® in Children
There are an estimated 500,000 children with type 1 diabetes in the world today. About half of these children live in resource-poor settings, often without necessary diabetes treatment facilities. These children have high mortality rates, with a life expectancy of less than one year after diagnosis in some countries in sub-Saharan Africa. This is the result of lack of awareness and poor access to diabetes care. As a response, Novo Nordisk established the Changing Diabetes® in Children. It is a five-year programme (2010 - 2014) which primary aim is to improve delivery of care to children with type 1 diabetes.
The Changing Diabetes® in Children programme is running in nine countries: Bangladesh, Cameroon, Democratic Republic of Congo, Ethiopia, Guinea, India, Kenya, Tanzania and Uganda.
Key achievements in May 2013 since project start include:
- 10,214 children enrolled in CDiC.
- 81 clinics were created to deliver care.
- In total 2,813 healthcare providers working in the clinics were trained in the specialities of diabetes care for children.
- Patient education material was developed in English, French and Amharic and distributed to all programme countries. The material is publically available at this website.
- Training manual including PowerPoint presentations have been developed in English and French by ISPAD. The material is publically available at this website.
A Training Manual: Diabetes in Children and Adolecents
Diabetes is a killer disease in many parts of the world, especially when it strikes in childhood or adolescence. This is because of its relative rarity, so that parents and family members do not recognise its subtle beginning symptoms (new onset enuresis, excess thirst, excess urination during the day and the night, and unexplained weight loss). Similarly, healthcare workers at all levels of sophistication, from triage workers to emergency room physicians, fail to ask questions about diabetes in developing countries where problems such as AIDS, malaria, pneumonia, sepsis or overwhelming gastrointestinal infection occur more commonly.
This manual has been prepared in order to help frontline healthcare professionals to improve the diagnosis, treatment and quality of life of children with diabetes in developing countries. It is produced with the hope that it will bring some basic knowledge to many parts of the world about paediatric and adolescent diabetes, insulin, diabetic ketoacidosis and hypoglycaemia emergencies.
The manual will be translated into different languages and will serve as the basis for further education and organisational efforts. The present manual complements the evidence-based ISPAD Clinical Practice Recommendations, which are updated regularly (www.ispad.org). A more detailed manual for providing further information about the specialised paediatric and adolescent diabetes centres that will be part of the Changing Diabetes® in Children collaborative effort is planned for 2011.
The training manual is available in English and French. Training presentations are also available. Click here to download.
The International Diabetes Federation estimates that half a million children worldwide now have type 1 diabetes. Of these, about a quarter of a million live in developing countries with inadequate healthcare. Sub-Saharan Africa has one fifth of the world’s children under five, but accounts for one half of all child deaths (from all causes) in the developing world.
Many children with diabetes die without being diagnosed as health care providers can miss diabetes through lack of adequate training. In children, diabetes shows itself as an acute crisis, so it is often misdiagnosed and the wrong, sometimes fatal, treatment is given, e.g. for dehydration or malaria. Treatment, and quality of life for those lucky enough to be correctly diagnosed, varies according to the availability and training of healthcare providers, and to the availability and accessibility of insulin and other supplies. In many cases no follow-up treatment is available.
Poverty, too, is a major barrier. On a personal scale, it limits what families can afford to pay for insulin, glucose monitoring strips and other equipment. In the absence of healthcare funding, these have to paid for out-of-pocket, which can mean the stark choice between medicines and food for the family. Transportation to medical centres for treatment can also be expensive or non-existent.
Better diagnosis and better care for children with type 1 diabetes is very difficult to achieve in developing countries, as it is not seen by governments as one of the most urgent priorities. Although it affects many thousands of children, other medical issues like HIV/AIDS, tuberculosis and malaria are still seen as a more pressing problem.
Working in Partnership
Due to the complexity of diabetes in children, a coordinated approach that targets multiple barriers to care is required to address the problem holistically. This calls for a simultaneous focus on information for both children and their families, acknowledged treatment guidelines, trained healthcare staff, infrastructure (clinics) and products. For this reason the Changing Diabetes® in Children programme is implemented in collaboration with both international and local partners, each contributing with specialised competencies. The other international partners include the World Diabetes Foundation, Roche and ISPAD. All activities are carried out in partnership with local partner organisations and in 2013 to ensure a sustainable approach. Next step is to enhance sustainability of the programme in each country, making sure that local partners will be able take over and drive the programme activities once Novo Nordisk’s involvement is disengaged.
Within each country in the programme, centres or hubs are established in existing diabetes clinics. Linked with each hub are a number of satellite access points which are general clinics offering diabetes monitoring and treatment. The whole hub-and-spoke system is coordinated by a central point for that country.
All children entering the programme become part of a diabetes register so their progress can be monitored and their treatment followed through receive free insulin, glucometers and strips – a service that continues for the duration of the programme. This programme is the first example of Novo Nordisk supplying free insulin, apart from its emergency aid initiatives.The programme gives major support to both the diabetes centres at the hubs and also the satellite access points. They are provided with medical equipment, including glucometers and strips; also storage facilities for medical supplies, with support to set them up correctly. The centres are given appropriate registry systems, developed by Novo Nordisk for recording blood glucose (HbA1c) and other monitoring data, and the training to use it. Data produced in this way is an invaluable source of information about the state of diabetes in these countries and how it is being controlled. It will contribute to our understanding of the practical extent of the problem. Only by gathering the missing information about who and where they are, will we be able to ensure that individual children are given access to desperately-needed treatment throughout the course of their illness.
All this equipment is complemented by information and training for both healthcare professionals and for the people with diabetes who are their patients. Medical staff are given training in how to identify the symptoms of diabetes and to give appropriate care. Age and literacy appropriate information is supplied for patients and their families to help them control their diabetes through diet and self-care.
Performance - 10,000 children reached
The goal set at the time of launch was to provide care for 10,000 children as well as developing a sustainable model for the delivery of diabetes care to children in low- and middle-income countries. In 2013, a year ahead of time, an important milestone was reached as 10,000 children were enrolled and receiving lifesaving treatment.
Estimates by the International Diabetes Federation suggest that approximately 250 thousand children in developing countries are afflicted with diabetes, but information is still sparse and incomplete. Our immediate priority is to register children who are already diagnosed and provide them with diabetes care, where after we will focus on issues of misdiagnosis and expansion of the programme. We are only beginning to bring together data on the present situation and how it is improving, and this is made even more difficult by the known inadequacies of diagnosis. In short, we need to be able to assess not only access to medicine, but the overall quality of care.
International Diabetes Federation. The Diabetes Atlas. Fourth Edition. Brussels: International Diabetes Federation; 2009.
UN High-level event on the Millennium Development Goals, September 2008. Fact Sheet on MDG 4: Reduce child mortality