Objective
The objective of this program is to generate evidence about effective approaches and strategies to increase timely diagnosis of people with T1D in Ethiopia, Ghana, and Nigeria.
Background Rationale
The incidence of T1D is significant and is expected to increase rapidly, especially in resource-limited countries – yet the true impact of this disease is often underestimated. In contrast to well-resourced settings, where T1D is effectively diagnosed and people with the condition have good long-term outcomes, missing prevalence, due to non-diagnosis, late diagnosis, and lack of adequate treatment leading to excess mortality, is high in LMICs.1 Low rates of diagnosis come hand-in-hand with high rates of diabetic ketoacidosis (DKA) at time of diagnosis, indicating that the path to diagnosis from the onset of symptoms has taken too long. Sadly, too often the outcome is death at onset of T1D due to failure to correctly diagnose the disease.
To save the lives of children and adolescents with T1D and address this massive equity gap, effective strategies are needed to ensure early warning signs and symptoms are recognized and lead to rapid diagnosis and treatment initiation. Earlier detection would result in reduced rates of DKA at time of diagnosis, and hence lower mortality.
Description of Project
In countries with developing health systems, Type 1 Diabetes (T1D) is often diagnosed late or never diagnosed at all. Late diagnosis can result in a serious complication called diabetic ketoacidosis (DKA). Missed diagnoses mean no treatment with insulin, and certain death. Although experts propose that in a well-functioning health system, as few as 5% of people newly diagnosed would have DKA, in some countries as many as 75% are diagnosed when in DKA. Sadly, too often the outcome is death without ever obtaining a correct diagnosis.
This project will work in Ethiopia, Ghana, and Nigeria to assess barriers and facilitators to improved diagnosis rates and provide evidence on the costs and effectiveness of different strategies to increase the timely diagnosis of children and adolescents living with T1D. In order to support timely diagnosis, CHAI will work in each country with local stakeholders to describe challenges at three stages in the pathway to treatment: (1) from when symptoms first appear to when the family seeks care at a health facility; (2) from when a child comes to the health facility and when the initial diagnosis of T1D is made; and (3) from when diagnosis is confirmed to when treatment is initiated. With a focus on the first two steps, teams in each country will implement targeted programs to increase awareness of T1D and common signs and symptoms among parents, teachers and community members. We will try new interventions at the school level such as in-school clubs and school health screenings. With government health officials, we will also train health workers who work at the primary care level and in the community on symptoms of T1D and emergency DKA response, and equip them to conduct confirmatory blood glucose testing. Lastly, we will define clear referral pathways to treatment to minimize delays between diagnosis and treatment initiation. In each country we will look at a basic package, focused on health facility diagnosis, and a comprehensive package that also includes community awareness activities, and will compare these packages to each other to the extent possible.
We decided to work in these three countries due to our perception of success factors for the program: existing CHAI programs and relationship with government, presence of collaboration partners, opportunity to achieve scale of the interventions, potential for effective evaluation, and commitment of the Ministries of Health to ensure sustainability. In each setting, programs will be developed and defined with local stakeholders, building on the current systems of diagnosis and care that are available in country, and planning for future sustainability.
As the selected package of interventions is implemented in each setting, we will assess the impact of the individual interventions and/or combined program of work on (1) number of children diagnosed with T1D, and (2) the percentage of children who are diagnosed with T1D while in DKA. We will also collect information about intervention costs and conduct qualitative research to understand more about the patient pathway and experience, causes of delays, and ongoing bottlenecks to diagnosis. This data may contribute to a broader set of programs supported by JDRF to more fully describe and implement evidence-based interventions to improve timely diagnosis and close the T1D diagnosis gap.
Anticipated Outcome
The outcomes will be:
1) Stakeholders will work together to develop a package of interventions to increase timely diagnosis of T1D to be integrated within existing systems and sustainable in the public sector
2) Package of interventions for awareness and for early diagnosis will be implemented in selected areas, including community awareness events, health worker training, school health intervention, and deployment of communications materials
3) Research study to generate evidence about the effectiveness and costs of the implemented interventions and to describe barriers and facilitators to timely diagnosis
4) Disseminated results and lessons learned within the program countries and internationally to influence government and donor investments and program practice
Relevance to T1D
This program will contribute to knowledge about health systems interventions to close the T1D diagnosis gap and improve timely diagnosis.