Integrated management of Type 1 DM children, CDiC, Uganda

Objectives

It is estimated that worldwide 70,000 children develop type 1 diabetes each year and disturbingly, the incidence is increasing. Awareness of the problem is low and treatment non-existent in many developing countries. As a result many have a very short life span or die even before a diagnosis is made.

Uganda is no exception. Currently, there is only one paediatric diabetes clinic in the whole country. In the rest of the country, children with type 1 diabetes are either treated at clinics for adults with type 2 diabetes or do not receive any care at all.

Many children with type 1 diabetes are never diagnosed, they simply die before they are seen by a health care professional who has sufficient knowledge about the disease and can make a proper diagnosis. Even among those who are diagnosed many have a very short life span after diagnosis and those who survive into adulthood often experience early onset of complications due to poor management of their disease. This should not be the case, because with effective treatment most children with type 1 diabetes grow into healthy, productive adults leading a full life.

The aim of the project is to establish a systematic approach for management of children with type 1 diabetes.

Approach

The paediatric diabetes clinic in Uganda is situated at Mulago Hospital in Kampala and has approximately 100 children attending the clinic. Another 100 children with type 1 diabetes sparingly attend the Nsambya Hospital also located in Kampala and a diabetes clinic in Arua in the north western part of Uganda. These latter 100 children do not receive structured care for the disease. In addition to these approximately 200 children known to have type 1 diabetes there are many children with type 1 diabetes who remain undiagnosed and die prematurely.

In order to improve care for children with type 1 diabetes, Nsambya Hospital in Kampala is implementing this project with support from the Ministry of Health. The project will complement other past and ongoing activities funded by WDF in Uganda and will also build upon a partnership between the Ministry of Health and Novo Nordisk A/S that includes the distribution of free insulin to children with type 1 diabetes.

The project will use the so-called "Hub and Spoke" concept to establish type 1 diabetes dedicated clinics. The concept consists of three components:
1. Establishment of specialised clinics for children
2. Training of doctors and nurses
3. Education of children with type 1 diabetes and their families

The first component will include the establishment of two type 1 diabetes centres of excellence for children at Mulago and Nsambya Hospitals in Kampala and the creation of two paediatric diabetes clinics in two peripheral districts, namely Arua and Wakiso. The clinics and centres will be established within the structures of existing diabetes clinics serving adult diabetes patients. All the clinics will be renovated and equipped with appropriate medical and laboratory equipment as well as a refrigerator for insulin storage.

Training of doctors and nurses - the second component - is required to ensure qualified staff at the clinics/centres. In this project, eight doctors and twelve nurses will receive intensive training on type 1 diabetes. The training will take place each year, starting with a four-day course the first year, which will be followed by a refresher course the second year and a consolidation course in the third and final year of the project. The participating doctors and nurses will be identified in collaboration with the Ministry of Health. The trained health care professionals are expected to train other health care professionals within their home health facilities; thereby increasing the number of health care professionals whose awareness is raised to 100.

When the clinics are staffed and up and running it is also planned to set up a national diabetes registry for children with type 1 diabetes. The registry would enable proper surveillance and follow up of patients and thereby improve the quality and consistency of care for the children attending the clinics. It is anticipated that 250 children with type 1 diabetes will receive improved care as a result of this project.

In order to implement the third component relating to self-care education of children with diabetes and their families, the existing education materials on diabetes will be revised and adapted to children. Also, a peer education support programme will be commenced. The programme will involve group sessions based on empowerment theory. Hence, the health worker facilitating the session will work in collaboration with the children and their parents in order to support the knowledge and skills of the children and help them attain self-selected goals and overcome barriers. A total of 150 children and their families will participate in the peer education support programme.

In addition to these activities, the project will also seek to raise awareness by organising diabetes camps. Each year a joint diabetes camp will be arranged for the centres at Mulago and Nsambya Hospitals and the clinic at Wakiso, while Arua, which is located 500 km away from the other clinic/centres, will organise its own camp. The camps will be free and include a lot of sports activities as well as an educational component aimed at helping the children to learn how to manage their disease.

The children who are part of this initiative will receive diabetes supplies, including glucometers, strips, insulin and syringes based on a partnership between the MoH, Roche Diagnostics and Novo Nordisk A/S.

Results at completion

• 3 type 1 diabetes training and referral centres have been established.
• 7 type 1 diabetes clinics have been established.
• 20 doctors, 42 nurses and 5 paramedics have been trained.
• 667 children with type 1 diabetes are registered and receive treatment in the 10 established clinics.
• 3 diabetes camps have been held