Review articleDiabetes in people with intellectual disabilities: A systematic review of the literature
Introduction
The term intellectual disabilities (ID) is characterised by significant limitations in intellectual functioning and adaptive behaviours originating before age 18. People with ID typically display an IQ below 70 and limited conceptual, social, practical and adaptive skills (Schalock et al., 2010). A range of alternative terms are used internationally, such as learning disabilities (LD), developmental disabilities (DD) and, less commonly, mental retardation (MD), which essentially label the same condition. ID remains the most widespread, universally recognised term and will be utilised throughout this paper.
People with ID constitute 1–2.5% of the population in the Western world (Gillberg & Soderstrom, 2003). Studies from England (Emerson et al., 2012) and Australia (Wen, 2004) report similar prevalence rates of 2% and 2–3% respectively. It has been previously recognised that people with ID experience poorer health compared with the general population (Glover, Emerson, & Eccles, 2012) in addition to a higher prevalence of physical health conditions and significant barriers to adequate health care (Jansen, Krol, Groothoff, & Post, 2004). There is a paucity of research specifically targeting diabetes and people with ID, yet it is apparent that it is an area requiring further attention considering evidence suggesting people with ID are more likely to experience the major diabetes risk factors – poor nutrition; high fat, sugar and salt intake; high blood pressure; a sedentary lifestyle with limited physical activity and associated obesity (Bartlo and Klein, 2011, Ewing et al., 2004, McGuire et al., 2007, Merrick and Morad, 2010, Merrick et al., 2004, Mokdad et al., 2003, Sohler et al., 2009a). The worldwide prevalence of diabetes is rapidly increasing, as is the number of people dying as a consequence of diabetes-related complications (WHO, 2006). Furthermore, a 14% increase in the number of people with ID by 2021 is predicted (Emerson & Hatton, 2008) with life expectancy advancing (Bittles et al., 2002). Diabetes is, therefore, impacting on the lives of people globally and evidence points to increasing complications and risk. People with ID are more likely to experience the major risk factors associated with diabetes and are living longer. As a consequence, appropriate access to healthcare and additional resources is required yet research focusing on the distinct needs of this population remains limited.
This paper presents findings from a systematic review of the current research evidence related to diabetes and people with ID. The review systematically evaluates data obtained from a total of 27 studies. It is envisaged that examining the available literature will identify gaps in evidence which can be used to inform further research and clinical practice in this field.
- 1.
What is the prevalence of diabetes amongst people with ID?
- 2.
What are the views of people with ID on managing their diabetes and the service they receive?
- 3.
What are the views of carers of people with ID and diabetes regarding diabetes management and the current service provision?
Section snippets
Search strategy
The primary literature search was carried out between October and November 2013 by the lead researcher. A comprehensive computerised search of the literature was conducted using 14 English language databases: AMED, CINAHL, MEDLINE, PsycINFO, ASSIA, ZETOX, PubMed, Psychology and Behavioural Sciences Collection, Sociological abstracts, Expanded Academic ASAP, Science Direct, Wiley Online Library, Web of Knowledge and Ingenta Connect. A search strategy for each database was developed using
Search results
A flow diagram of data retrieved at each stage of the literature search can be seen in Fig. 1. A total of 27 studies (Butler et al., 2002, Cardol et al., 2012a, Cardol et al., 2012b, Chen et al., 2011, Dysch et al., 2012, de Winter et al., 2012, de Winter et al., 2013, Goldacre et al., 2004, Hale et al., 2011, Haveman et al., 2011, Havercamp et al., 2004, Hillege et al., 2013, Hoybye, 2004, Kerr et al., 2003, Lunsky et al., 2011, McDermott et al., 2006, McDermott et al., 2007, Morin et al., 2012
Discussion
The findings from the quantitative studies indicated that there is no clearly identified prevalence of diabetes in people with ID within the available literature, however, the evidence points to significantly higher prevalence rates for these individuals than the non-ID population. The results from the qualitative studies which obtained data from people with ID about managing their diabetes suggested respondents had a basic understanding of diabetes and many want to know more. People with ID
Conclusions
In conclusion, from systematically reviewing the current literature relating to people with ID and diabetes, it is apparent that further research is required to both clarify diabetes prevalence and to devise appropriate management strategies that enable family cares and professionals to better support the intellectually disabled to manage their diabetes. This is important as, in addition to one that is ageing and increasing, this population already presents with comorbid physical and mental
Conflict of interest
The authors declare that there is no conflict of interest.
Acknowledgements
The corresponding author undertook the initial literature review, synthesis and write up of the results. All authors contributed to and assisted with the analysis, preparation, drafting and revising of the manuscript.
References* (58)
- et al.
The healthy lifestyle change program a pilot of a community-based health promotion intervention for adults with developmental disabilities
American Journal of Preventative Medicine
(2009) - et al.
Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes
Patient Education and Counseling
(2012) - et al.
Cardiovascular risk factors (diabetes, hypertension, hypercholesterolemia and metabolic syndrome) in older people with intellectual disability: Results of the HA-ID study
Research in Developmental Disabilities
(2012) - et al.
Learning Disability. Seminar
The Lancet
(2003) Endocrine and metabolic aspects of adult Prader–Willi syndrome with special emphasis on the effect of growth hormone treatment
Growth Hormone and IGF Research
(2004)- et al.
Association of sociodemographic characteristics of children with intellectual disability in Western Australia
Social Science & Medicine
(2005) - et al.
Quality of diabetes care for adults with developmental disabilities
Disability and Health Journal
(2010) - et al.
Physical activity benefits and needs in adults with intellectual disabilities: Systematic Review of the Literature
American Journal of Intellectual and Developmental Disabilities
(2011) Qualitative research methods for social sciences
(2007)- et al.
The influence of intellectual disability on life expectancy
The Journals of Gerontology Series A: Biological Sciences and Medical Sciences
(2002)
Prevalence of, and risk factors for, physical ill-health in people with Prader–Willi syndrome: A population-based study
Developmental Medicine and Child Neurology
People with mild to moderate intellectual disabilities talking about their diabetes and how they manage
Journal of Intellectual Disability Research
A preliminary report on the medical profile of disabled persons living in Zhabei District, Shanghai, Mainland China
Quality in Primary Care
Basics of qualitative research; techniques and procedures for developing grounded theory
Associations of symptoms of anxiety and depression with diabetes and cardiovascular risk factors in older people with intellectual disability
Journal of Intellectual Disability Research, 2013 (online)
Equal treatment: Closing the gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems
How do people with intellectual disabilities and diabetes experience and perceive their illness?
Journal of Applied Research in Intellectual Disabilities
Quality Assessment Tool for Quantitative Studies
Health inequalities & people with learning disabilities in the UK
People with learning disabilities in England
People with Learning Disabilities in England: 2011
Evaluation of a cardiovascular health program for participants with mental retardation and normal learners
Health Education and Behaviours
Using local data to monitor the health needs of people with learning disabilities
Cancers and immune related diseases associated with Down's syndrome: A record linkage study
Archives of Disease in Childhood
Self-management abilities of diabetes in people with an intellectual disability living in New Zealand
Journal of Policy and Practice in Intellectual Disabilities
Critical appraisal of qualitative research
Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study
Journal of Intellectual and Developmental Disability
Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina
Public Health Reports
The challenges for families managing an adolescent with an intellectual disability and type 1 diabetes
Australian Journal of Advanced Nursing
Cited by (51)
Patterns in the prevalence of diabetes and incidence of diabetic complications in people with and without an intellectual disability in Dutch primary care: Insights from a population-based data-linkage study
2021, Primary Care DiabetesCitation Excerpt :Previous studies that tried to estimate basic insights such as the prevalence of diabetes among people with ID encountered methodological limitations such as small samples and difficulties in generalizing findings from subgroups with specific ID diagnoses to the ID population at large [7,9–15]. Prevalence rates have been found to range between 0.4 and 25%, and have been inconclusive as to whether diabetes is more prevalent than in the general population [7,16]. However, commonly observed diabetes-related risk factors such as unhealthy lifestyles and metabolic effects of psychotropic drug use, contribute to the shared belief that diabetes is more prevalent in people with ID than in the general population [17–21].
A Scoping Review of Wearable Technologies for Use in Individuals With Intellectual Disabilities and Diabetic Peripheral Neuropathy
2024, Journal of Diabetes Science and Technology
- *
Denotes studies included in the systematic review.