Diabetes in people with intellectual disabilities: A systematic review of the literature

doi:10.1016/j.ridd.2015.10.003

Research in Developmental Disabilities

Volume 47, December 2015, Pages 352-374

https://doi.org/10.1016/j.ridd.2015.10.003 Get rights and content

Highlights

•
Previous research suggests significantly higher rates of diabetes in people with ID than the general population.
•
People with ID report a basic understanding of diabetes and want to know more.
•
Existing mainstream diabetes management programmes need to be modified or developed for people with intellectual disabilities.
•
Carers report that they lack diabetes knowledge and do not routinely encourage diabetes self-management skills.

Abstract

Objective

To present an analysis of the evidence related to the prevalence of diabetes in people with intellectual disabilities (ID), their experiences of their condition and treatment and those of their carers.

Materials and methods

A systematic literature review was conducted. A total of 22 studies exploring diabetes prevalence and 5 exploring views and experiences of diabetes in people with ID were identified and included. A narrative synthesis approach was utilised to amalgamate data extracted from the included studies regarding some 49,046 participants with ID and diabetes and 31 care professionals and family members across Europe, North America, New Zealand, Australia, China and Hong Kong.

Results

Prevalence rates of diabetes in people with ID were highly varied, ranging from 0.4% to 25%. 7 studies reported significantly higher rates of diabetes in people with ID than the general population. People with ID reported a basic understanding of diabetes and wanted to know more. Carers reported that they lack diabetes knowledge and do not routinely encourage diabetes self-management skills. Several studies neglected to report vital demographic information such as participants’ level of ID (13 studies) and diabetes type (16 studies) and the quality of included prevalence studies was variable.

Conclusions

Further research in this field is required, notably prevalence studies which control for participant demographics and personal situations to obtain more accurate diabetes prevalence rates in this population group. People with ID and diabetes should be encouraged to participate in future research and we recommend exploring the feasibility of adapting current mainstream diabetes management programmes for these individuals.

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)

A.T. Bazzano 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)
M. *Cardol et al.
Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes
Patient Education and Counseling
(2012)
C.F. *de Winter 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)
C. Gillberg et al.
Learning Disability. Seminar
The Lancet
(2003)
C. *Hoybye
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)
H. Leonard et al.
Association of sociodemographic characteristics of children with intellectual disability in Western Australia
Social Science & Medicine
(2005)
T. *Shireman et al.
Quality of diabetes care for adults with developmental disabilities
Disability and Health Journal
(2010)
P. Bartlo 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)
B. Berg
Qualitative research methods for social sciences
(2007)
A.H. Bittles et al.
The influence of intellectual disability on life expectancy
The Journals of Gerontology Series A: Biological Sciences and Medical Sciences
(2002)

J.V. *Butler et al.

Prevalence of, and risk factors for, physical ill-health in people with Prader–Willi syndrome: A population-based study

Developmental Medicine and Child Neurology

(2002)

M. *Cardol et al.

People with mild to moderate intellectual disabilities talking about their diabetes and how they manage

Journal of Intellectual Disability Research

(2012)

G. *Chen et al.

A preliminary report on the medical profile of disabled persons living in Zhabei District, Shanghai, Mainland China

Quality in Primary Care

(2011)

J. Corbin et al.

Basics of qualitative research; techniques and procedures for developing grounded theory

(2008)

C.F. *de Winter et al.

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)

(2013)

Disability Rights Commission (DRC)

Equal treatment: Closing the gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems

(2006)

C. *Dysch et al.

How do people with intellectual disabilities and diabetes experience and perceive their illness?

Journal of Applied Research in Intellectual Disabilities

(2012)

Effective Public Health Practice Project

Quality Assessment Tool for Quantitative Studies

(2008)

E. Emerson et al.

Health inequalities & people with learning disabilities in the UK

(2010)

E. Emerson et al.

People with learning disabilities in England

(2008)

E. Emerson et al.

People with Learning Disabilities in England: 2011

(2012)

G. Ewing et al.

Evaluation of a cardiovascular health program for participants with mental retardation and normal learners

Health Education and Behaviours

(2004)

G. Glover et al.

Using local data to monitor the health needs of people with learning disabilities

(2012)

M.J. *Goldacre et al.

Cancers and immune related diseases associated with Down's syndrome: A record linkage study

Archives of Disease in Childhood

(2004)

L.A. *Hale et al.

Self-management abilities of diabetes in people with an intellectual disability living in New Zealand

Journal of Policy and Practice in Intellectual Disabilities

(2011)

K. Hannes

Critical appraisal of qualitative research

M. *Haveman et al.

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Journal of Intellectual and Developmental Disability

(2011)

S. *Havercamp et al.

Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina

Public Health Reports

(2004)

S. *Hillege et al.

The challenges for families managing an adolescent with an intellectual disability and type 1 diabetes

Australian Journal of Advanced Nursing

(2013)

Cited by (51)

Widening disparities in the national prevalence of diabetes mellitus for people with disabilities in South Korea
2024, Public Health
In Korea, diabetes mellitus has a high disease burden, based on disability-adjusted life years. However, the disease burden is disproportionately distributed, with people with disabilities (PWD) experiencing higher rates of health disparities. Our study investigated long-term trends in diabetes prevalence and risk according to disability status, grade, and type.
Retrospective cohort study.
Approximately 10 million individuals aged ≥30 years were included yearly from the National Health Information Database (NHID) and national disability registration data in Korea between 2008 and 2017, corresponding to 40 % of those aged ≥30 years in Korea. In 2017, 12, 975, 757 individuals were included; 5.5 % had disabilities. We estimated annual diabetes age-standardized prevalence and used multiple logistic regression analyses to estimate the odds of having diabetes in 2017, according to disability status, severity, and type.
Diabetes age-standardized prevalence consistently increased over 2008–2017 in PWD and people without disabilities. However, the prevalence increased more rapidly and was higher in all years among PWD, with widening disparities based on disability status. Additionally, diabetes prevalence was high in all years for specific subgroups, including women, individuals with intellectual or mental disabilities or autism, and individuals with severe disabilities, suggesting further disparities among PWD.
Our findings reveal health disparities between those with and without disabilities and among PWD subgroups. In addition to timely prevention, diabetes screening and management among PWD is vital. Public investment in improving disparities in the root causes of diabetes is essential, including health behaviours, healthcare utilization, and self-care.
The delivery of healthy lifestyle interventions for people with disability living in supported accommodation: a scoping review of intervention efficacy and consumer involvement
2023, Disability and Health Journal
People with disability living in supported accommodation experience health disparities that may be partly attributed to sedentary lifestyle behaviors and poor dietary quality. Healthy lifestyle interventions have been suggested as a method of health promotion for this population; however, a synthesis of their efficacy has not yet been conducted.
The primary aims were to (1) identify healthy lifestyle interventions delivered to people with disability living in supported accommodation and (2) examine their efficacy in supporting health and well-being. A secondary aim was to explore whether people with disability have been involved in the codesign of these interventions.
A scoping review was conducted following the Joanna Briggs Institute's guidance for conducting scoping reviews, and six databases were searched from January 2011 to November 2021.
Thirty-two studies were included. Identified intervention types included training and education, exercise programs, and multicomponent interventions. A broad range of outcomes were examined; however, findings regarding efficacy were overall mixed and limited due to significant heterogeneity and the underreporting of consistently measured outcomes. The codesign of interventions in consultation with people with disability was underexplored.
Health promotion training for staff and tailored education for people with disability hold promise in creating a care environment that supports a healthy lifestyle. The paucity of interventions developed in consultation with people with disability is concerning and highlights the importance of meaningful co-design. The development of a theoretically informed intervention that is codesigned and addresses the broader social determinants that influence health behavior is recommended.
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 Diabetes
Citation 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].
To conduct an epidemiological analysis of patterns observed in diabetes care provided to individuals with and without intellectual disabilities (ID) in primary care settings.
An ID-cohort (N = 21,203) was compared with a control group of similar age and sex from the general Dutch population (N = 267,628). Distinctive data for diabetes (both type 1 and type 2) and related complications were retrieved from national databases.
The prevalence of diabetes was higher in people with ID than in the general population (9.9% versus 6.6%). Largest differences were seen in younger age groups. Women with ID had diabetes more often than men with ID. Complications were less common in people with ID than in the general population (IR 58.6 vs. 70.4). In particular, cardiological complications were noted less, while surgical interventions and hospitalization occurred more often.
Although diabetes was 1.5 times more prevalent in people with ID than in other people, related complications were less common, followed different patterns and were more severe than in the general population. Future research is needed to understand of the underlying causal mechanisms and to lower the risk of severe diabetic complications among people with ID.
Diabetes mellitus in an adolescent girl with intellectual disability caused by novel single base pair duplication in the PTRH2 gene: Expanding the clinical spectrum of IMNEPD
2021, Brain and Development
Infantile-onset multisystem neurologic, endocrine, and pancreatic disease (IMNEPD) is an extremely rare autosomal recessive disorder with variable expressivity, caused by biallelic mutations in the PTRH2 gene. Core features are global developmental delay or isolated speech delay, intellectual disability, sensorineural hearing loss, ataxia, and pancreatic insufficiency (both exocrine and endocrine). Additional features may include postnatal microcephaly, peripheral neuropathy, facial dysmorphism, and cerebellar atrophy. In literature, there are only a few anecdotal case reports and none of the previous cases presented with diabetic ketoacidosis.
We are reporting a 12-year old adolescent girl with mild intellectual disability who presented with fever, pain abdomen for 2 days, and fast breathing for one day.
Her random blood sugar was 472 mg/dl and arterial blood gas revealed high anion gap metabolic acidosis. Urine examination showed ketonuria. On further evaluation, she was found to have demyelinating sensorimotor polyneuropathy and sensorineural hearing loss. Neuroimaging and other ancillary investigations were normal. Whole exome sequencing revealed a novel homozygous single base pair duplication in exon 1 of the PTRH2 gene (c.127dupA, p.Ser43LysfsTer11), confirming the diagnosis of IMNEPD.
Apart from describing a novel single base pair duplication causing protein truncation in the PTRH2 gene for the first time, our case also expanded the clinical spectrum of IMNEPD, as this is the first case with seemingly pure neurodevelopmental phenotype, who later developed diabetes mellitus, without any exocrine pancreatic abnormality. IMNEPD should be considered in children or adolescents with global developmental delay or intellectual disability when they develop diabetes mellitus.
Using a theoretically driven approach with adults with mild-moderate intellectual disabilities and carers to understand and improve uptake of healthy eating and physical activity
2020, Obesity Medicine
Adults with mild-moderate intellectual disabilities (ID) have poorer diets and participate less in physical activity than adults in the general population. The current study aimed to gather perspectives of this group and their carers on how uptake of healthy eating and physical activity could be improved amongst adults with ID.
Qualitative interview study with 12 adults with ID and 12 carers using a Social Cognitive Theory based approach to understand their current behaviour and how to support behaviour change effectively with this group.
Participants reported that adults with ID may be more responsive to subjective, experiential benefits of health behaviours, including improved energy levels, mood and digestion than abstract changes in weight or muscle mass. Mastery of practical goals potentially leading to employment, purposeful activities and recognition of effort was also considered important. Fostering trust and rapport in their relationships with carers and providing training to carers on health promotion and management of challenging behaviour would also increase intervention effectiveness.
Behaviour change interventions with adults with mild-moderate ID may be improved by tailoring content to their needs and involving carers in health promotion programmes.
A Scoping Review of Wearable Technologies for Use in Individuals With Intellectual Disabilities and Diabetic Peripheral Neuropathy
2024, Journal of Diabetes Science and Technology

View all citing articles on Scopus

^*: Denotes studies included in the systematic review.

View full text

Review articleDiabetes in people with intellectual disabilities: A systematic review of the literature

Highlights

Abstract

Objective

Materials and methods

Results

Conclusions

Introduction

Section snippets

Search strategy

Search results

Discussion

Conclusions

Conflict of interest

Acknowledgements

American Journal of Preventative Medicine

Patient Education and Counseling

Research in Developmental Disabilities

The Lancet

Growth Hormone and IGF Research

Social Science & Medicine

Disability and Health Journal

Physical activity benefits and needs in adults with intellectual disabilities: Systematic Review of the Literature

American Journal of Intellectual and Developmental Disabilities

Qualitative research methods for social sciences

The influence of intellectual disability on life expectancy

The Journals of Gerontology Series A: Biological Sciences and Medical Sciences

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

Review article
Diabetes in people with intellectual disabilities: A systematic review of the literature