Title: Opportunity-Led Research Proposal: Diabetes education for adults with intellectual disabilities (ID) with Type 2 diabetes (T2D) and their family/paid carers: a pilot RCT
Funder: Health and Social Care Research and Development Division (HSC R&D) of Public Health Agency, Northern Ireland

Abstract: Background: Diabetes mellitus affects approximately 1 in 20 people across Europe and accounts for an uneven use of healthcare resources (IDF, 2007). According to the WHO (2006), rates of diabetes worldwide will increase from 177 million in 2000 to 366 million by 2030, a global prevalence rate of 6.3%. Specific risk factors for the development of T2D are having a sedentary lifestyle, little exercise, poor nutrition (high fat and low fibre), obesity, high blood pressure and cholesterol, increasing age, family history of diabetes and ethnicity (Turner et al., 1988, Mokdad et al., 2001). Traditional management of T2D includes diet and lifestyle modifications with oral anti-glycaemic agents and then insulin added according to recognised treatment algorithms T2D is usually managed by the patients’ GP and practice nurse during three-monthly visits to the health centre. T2D and people with ID: People with ID are more likely to have risk factors for, and have a higher prevalence of, T2D compared to non-ID population (Havercamp et al., 2004, Merrick & Morad, 2010, Shireman et al., 2010, Taggart et al., 2013, Taggart et al., 2014). The prevalence figures of diabetes in North America were found to vary from 7.1% to 14% depending on the sample used (McDermott et al., 2006, Shireman et al., 2010, Lunsky et al., 2011). Diabetes UK (2009) has estimated that 270,000 people with ID have T2D. Figures are not yet known for Northern Ireland. There is clear evidence that many young people and adults with ID have a more sedentary lifestyle, undertake low levels of exercise, and consume high-fat diets all of which can contribute towards obesity: significant risk factors for developing T2D (Taggart & Cousins, 2014). As with the non-ID population, people with ID are also living longer thereby being more susceptible to developing a range of chronic physical health conditions associated with the ageing process including T2D (Sohler et al., 2009). Quality indicators of diabetes: Rarely have studies examined the extent to which diabetes is managed in adults with ID or whether the quality indicators for diabetes care are being met (Beange et al., 1995, Taggart et al., 2013, 2014). Lennox et al. (2007) found a considerable number of people with ID living in community had diabetes and were obese who were neither identified nor managed. Diabetes management includes an annual review in which the individual is screened for the onset of a range of chronic conditions. There is some evidence to suggest that many people with ID and diabetes miss out on such screenings. Nationally and internationally, standards and guidelines have been developed to enhance the prevention, the early detection and management of diabetes (NICE Guidelines for Diabetes(2011), The NHS for Diabetes (DH, 2007), Diabetes UK (2011)). However, Taggart et al. (2013) in a study of 186 adults with ID in N Ireland highlighted that many of these standards of diabetes practice have not been met for this population: further illustrating ongoing inequality and disadvantage. Diabetes and structured education: As many patients find T2D self-management difficult to implement and sustain, therefore the need for structured, rather than ad hoc, patient education programmes for T2D using both a theoretical rationale and cognitive reframing have been given a high priority on the UK government’s healthcare agenda (Ellis et al., 2004, NICE, 2004, DoH, 2005, Richards, 2011). Long-term poor glycaemic control leaves adults with chronic problems such as blindness, renal failure, amputation and cardiovascular problems (stroke and myocardial infarction): leading to premature death. It is well established that the treatment and management of the long-term complications of diabetes account for 10% of NHS budget (Wanless, 2012). Aim of study: To develop a structured T2D education programme for people with ID and their carers, and to assess the potential gains from such a programme.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;METABOLIC AND ENDOCRINE