Diabetes poorly managed in people with ID

By Laurence Taggart, PhD
Institute of Nursing Research, School of Nursing, University of Ulster, Coleraine, Northern Ireland, UK

People with intellectual disabilities (ID) are at a higher risk of developing diabetes compared to the non-disabled population, as they are more likely to lead a sedentary lifestyle, undertake low levels of exercise, and consume high-fat diets. All of these elements can contribute to obesity, which is a significant risk factor for developing Type 2 diabetes (T2D).

What did you do in your research?
We wanted to examine the demographics and the health and quality of diabetes care indicators amongst a sample of people with ID in Northern Ireland. Questionnaires were mailed to all community ID teams and supported living/residential managers.

What did you find out?
Completed questionnaires were returned on 186 people with ID. Two-thirds (67%) were reported to have T2D, whereas 61 people (33%) had Type 1 diabetes (T1D). A significant number of the people with T1D (23%) had Down syndrome compared to 8% of those with T2D. Significantly more people with Autism Spectrum Disorder (ASD) had T1D (13%) compared to 5% with T2D. Furthermore, the majority of participants with ID were found to be obese, with 17% co-morbidly obese.

Quality of diabetes care indicators: Over the last 12-month period, 59% of the sample had their HbA1c (average level of blood sugar/glucose) monitored, 78% had their lipid/cholesterol levels checked, 77% had an annual eye check, and 10% had attended an emergency room as a consequence of their diabetes. Results also illustrate that the national standards for good diabetes management were only partially being met due to a lack of regular health screening of Hb1Ac, body mass index (BMI), blood pressure, and lipids/cholesterol. As half of the informants did not know or failed to report the above information, this raises concerns regarding whose responsibility it is to monitor and manage diabetes in people with ID. Without the appropriate health screening and management, people with ID who have diabetes will remain a high-risk group difficult to reach, identify and monitor. Therefore, the secondary complications (i.e. blindness, renal failure, amputation and cardiovascular problems) associated with diabetes, leading to premature death, are likely to increase.

What are the take-home messages?
People with ID are more likely to be at risk from developing both T1D and T2D as a result of having a genetic condition (i.e. Down syndrome) and leading a sedentary lifestyle (i.e. little exercise, poor nutrition, obesity, hypertension) respectively. Numbers of people with ID developing T2D will increase as they age. For over half of the people with ID their diabetes was poorly controlled. Living with any long-term condition such as diabetes is challenging associated with its daily management regime: planning what to eat, planning physical activity, monitoring weight and blood glucose, and managing medication and/or insulin injections as well as avoiding serious secondary complications that can lead to premature death. This is even more demanding and complicated for a person with an ID. Cognitive impairment, communication difficulties, and other associated conditions make them more dependent upon their carers to support them to manage and monitor this chronic condition. Government policies place a strong ethos upon self-management at the heart of living with diabetes; however this further poses challenges for this population and those who provide care for them. Greater emphasis needs to be placed upon collaborative working and education between ID, primary healthcare, and diabetes staff in order to meet these quality indicators and improve the quality of life of this population.

To learn more about these findings contact
Laurence Taggart.

Full Journal Article
Taggart, L., Coates, V. and Truesdale-Kennedy, M. (2013), Management and quality indicators of diabetes mellitus in people with intellectual disabilities. Journal of Intellectual Disability Research, 57: 1152–1163.

We have currently ben funded by
Diabetes UK to examine Diabetes education for adults with ID with Type 2 diabetes and their carers. The aim of this research is to evaluate strategies that can facilitate the self-management of T2D through the development and testing of DESMOND Programme for adults with ID. This programme of research will be conducted in three stages: (1) adaptation of a widely used DESMOND education programme to enhance its suitability for those with an ID and their carers (2) examining the psychosocial (i.e. quality of life, beliefs about diabetes, impact of diabetes) and self-management strategies (i.e. diet, activity, smoking) and their adaptation to those with ID, in terms of the invariance of their factor structure (3) conducting an exploratory trial to test the feasibility of using an adapted DESMOND programme among people with ID and their carers.