Rethinking Diabetes Risk in ID
A Review of Risk Factors for Diabetes in Persons with Intellectual Disability and Opportunities for Early Detection and Management
Nikki Jacobus, Bethany Robinson, Catherine Ly, and David Jenkins
Due to the high prevalence of diabetes in persons with intellectual disability (ID) and the benefits of diabetes testing/screening and regular exercise, the authors encourage health care providers to consider those with ID a high risk category for diabetes and screen accordingly. They further propose increased participation in exercise and sports activities.
Introduction
Current literature has determined that persons with intellectual disability (ID) are 2-3 times more likely to have diabetes. The higher prevalence has many causes, attributed to hormone problems inherent in many of the ID conditions. Notably, a significantly higher rate of obesity and sedentary lifestyle are observed in the ID population. Another factor that persons with ID may experience is poor access to health care as a result of cultural and socio-economic factors. When looking at treatments designed to manage diabetes, exercise has been found to dramatically benefit persons with diabetes, but many clinicians are frustrated by the unwillingness of their patients with diabetes to exercise as a result of certain barriers and challenges.
The objective of this article is to provide an overview of the current literature regarding the prevalence of diabetes in persons with ID. Additionally, we will describe the overwhelming evidence supporting the benefits of exercise for persons with diabetes and examine the many barriers and challenges that persons with diabetes report regarding why they will not exercise. Lastly, it is hoped that the findings in this review can play a role in the creation of recommendations for a health screening process for not only risk factors for diabetes in the ID population but for associated medical problems such as diabetic foot ulcers.
Intellectual Disability
Intellectual disability (ID) is a condition that hinders the development of the brain before, during, or after birth. ID can be a result of genetic or environmental influences. An IQ score of below 70 to 75 indicates a significant limitation in intellectual functioning. Conditions that are highly associated with ID include Down syndrome, fetal alcohol spectrum disorders, Prader-Willi syndrome, cerebral palsy, spina bifida and Apert’s syndrome to name a few.
Diabetes
Diabetes is a chronic health condition characterized by the body’s inability to regulate blood sugar levels. The three main types of diabetes are type 1, type 2, and gestational diabetes. Type 1 diabetes is an autoimmune disorder in which the beta cells of the pancreas are destroyed, resulting in the pancreas producing little to no insulin. In type 2 diabetes, the pancreas still secretes insulin, but the body’s tissues are not able to respond due to insulin resistance. Pre-diabetes is a condition where patients show higher than normal blood sugar levels, but levels are not at the level of a type 2 diabetes diagnosis. Pre-diabetes is a significant risk factor for the future development of type 2 diabetes.
Those with diabetes are at increased risk of nerve damage. Peripheral neuropathy is a type of nerve damage where sensation is lost in the extremities. The loss of protective sensation makes it difficult to recognize injuries to the feet such as blisters, sores, or cuts. Undetected and untreated, these wounds can develop into ulcers and become infected leading to amputation. Foot health screenings are an important preventative measure to observe and treat injuries before they develop into more serious conditions.
Both screening and early diagnosis of type 2 diabetes, as well as timely initiation of care for hyperglycemia and cardiovascular risk factors, should provide significant health benefits. The sooner the treatment is started the better.
Intellectual Disability and Diabetes
Research on diabetes, related to persons with ID, is relatively limited, but existing articles suggest a predisposition for diabetes and increased prevalence rates. Adults with intellectual and developmental disabilities (IDD) are 2-3 times more likely to incur type 2 diabetes compared to the general population due to associated medical conditions, hereditary influences, and lifestyle challenges. A detailed analysis of 22 studies found the average prevalence rate across all 22 studies was 8.3%. and eleven of the studies determined that the rate of diabetes is higher in the ID population than the general population, which in the United States is reported to be 11.3%. One study found that persons with ID are more likely to require hospitalization when compared to the general population. Certain intellectual disabilities, such as Down syndrome, are highly associated with diabetes. Studies proport that persons with Down syndrome experience a 4 to 35 times greater prevalence of type 1 diabetes when compared to the general population.
Lastly, besides Down syndrome, there are specific ID conditions that make the likelihood of developing diabetes much higher, including Prader-Willi syndrome. This is a condition associated with excessive eating due to hormone deficiency, which can lead to obesity, increasing the risk of developing diabetes.
In summary, there is agreement that persons with ID are predisposed to developing diabetes as per multiple factors such as hormone problems, medication use, higher rates of obesity, a sedentary lifestyle, specific ID conditions like Down syndrome, and limited access to healthcare due to socio-economic and cultural barriers.
An example of medication use; persons with ID routinely receive antipsychotic medications at a far higher rate than the general population. Incredibly, this degree of prescribing can be as great as 56% in a group home based ID population versus 1% in the general population Antipsychotics tend to promote weight gain and thus an increased risk of developing diabetes.
Higher rates of obesity are also incredibly common in the ID community which also leads to an increased risk of diabetes. One study found an obesity rate of 47% in persons with ID versus 34% in the general population. Special Olympics global data shows that a significant number of athletes over the age of 20 are obese, ranging from 12.3% in the East Asia region to over 46.2% in the North America region. Persons with ID experience a high degree of obesity for multiple reasons and may include consumption of unhealthy foods, struggles with chewing and/or swallowing food, living in a situation that may hamper dietary options e.g., group home environment, unable and/or unwillingness to exercise due to physical impediments.
Another important consideration is that a significant number of persons with ID are living in poverty. Typically, those in poverty tend to rely on food that is far from nutritious, commonly high in calories and processed. Given that individuals with the highest poverty rates also are the most obese, one can conclude that those with ID may suffer from obesity due to poverty conditions which then increases the risk for diabetes. Unfortunately, even those with ID that are in group homes are not afforded healthy nutritional choices.
Barriers to Care
Lack of Inclusive Healthcare
Another important aspect to consider that can further increase the risk of developing diabetes in patients with ID is the lack of inclusive and accessible healthcare for these individuals. For example, many individuals in this patient population have difficulty communicating. Cognitive impairments may make it more difficult for persons with ID to identify/communicate symptoms to healthcare professionals, lessening the chance for a screening. Diagnostic overshadowing (where the clinician assumes the symptoms/findings are due to the ID diagnosis instead of medical conditions. This similarly may lessen the chance of a screening taking place.
Provider Training and Attitudes
Institutions that train future healthcare providers often do not prepare students enough to care for and communicate properly and effectively with patients with ID. According to a study that gave surveys to medical students, 36% of students felt that their school gave them what they needed to effectively care for patients with disabilities. The majority, 97.6%, of students believed that they needed more training on this topic.
Socioeconomic Status and Poverty
It can be arduous for a person with ID to obtain employment. For a variety of reasons, many employers are reluctant to hire those with ID. Reasons given include misconceptions about abilities such as productivity, fear based on ignorance about those with ID and concerns that person with ID will be untrainable. They fear having employees with ID is more costly to employ and the bottom line will suffer. So many of these fears are driven by ignorance, misconceptions, and stereotypes. Struggles with obtaining employment and associated poverty can result in financial instability which increases the difficulty in affording healthcare and studies show this patient population experiences more healthcare inequalities because of their financial status. As noted above, these factors also result in a very poor nutritional picture adding to obesity/diabetes risk. If these patients cannot afford proper healthcare, then they may not receive necessary treatment for diabetes.
Health Care Screenings for Diabetes in those with ID
Current literature reports that persons with ID experience difficulty in obtaining screenings for chronic health conditions, and this scenario worsens as one ages. Early detection is imperative as compared to the general population, as people with ID that develop diabetes are more prone to suffer kidney disease, heart disease, eye damage, diabetic nerve damage, or amputation of limbs.
Likewise, a report states that persons with ID were screened at a lower rate than the general population in a studied Medicaid. A number of studies emphasize the scarcity of diabetes interventions for individuals with IDD, and highlight the need for tailored programs, enhanced education, policy changes, and further research to improve their health outcomes.
Although there is a paucity of literature pertaining to screening for diabetes in persons with ID, a number of publications point out the dire status of persons with ID related to diabetes and a tremendous need for screenings. One such study found high levels of obesity and dismal blood sugar control amongst several other health findings, and they query who should best address this significant deficiency in those health findings.
Another study surveyed Canada’s approach to when to screen for diabetes and who are the high risk groups to assess? At the time of their publication, only the elderly, indigenous persons and pregnant women were considered high-risk and in need of screening for diabetes. The authors called for significant changes in the protocol. First, those with ID should be included in the high risk category for screenings. They also recommended an earlier age for screening those with ID and much improved and easier to understand educational materials about diabetes and self-care. Providing information and guidance for caregivers was also felt to be an important change Another study suggested screening for diabetes in persons with ID at 30 years of age, a full 10 years prior to the prevailing convention.
Although few studies address the availability of screenings, publications addressing the efficacy or success of such screenings are even more limited. One study that does describe a model screening and reports on its effectiveness suggests including queries regarding overall medical history, aspects of lifestyle, blood pressure, BMI, and hematologic studies related to blood sugar status.
Exercise and Diabetes
Given that diabetes is so prevalent among people with ID, it is important to consider the relationship of diabetes and one of its commonly recommended treatments, exercise. The barriers to exercise participation discussed below are not unique to those with ID. Reluctance to exercise is an issue not just seen in the ID or diabetes population. but the general population at-large.
Exercise provides physiological benefits for patients with diabetes. In addition to losing weight and improving muscle tone, heart rate, and respiratory function, exercise can also help patients control their diabetes itself. Long term exercise is known to enhance insulin receptors and glucose transporters which reduce insulin resistance, and exercise also helps with blood sugar control (reducing the HbA1c values a test that measures blood sugar over a longer period of time). Exercise also offers patients with diabetes psychological benefits. Exercise is known to improve major depressive disorder (a condition comorbid with diabetes), enhance self-image, and instill self-discipline which may help patients comply with their diabetes treatment regimens.
Diabetes care is costly – managing diabetic foot ulcers (DFUs) alone costs more than treatment for the top 5 most expensive cancers. Currently, patients with diabetes make up over 50% or 100,000 major lower limb amputations per year, which then leads to a poor 5-year death rate. Though exercise can do much to control diabetes and reduce these costs and risks, patients are still extremely reluctant to exercise due to real and perceived barriers. Regrettably, over one half of adolescents with type 2 diabetes mellitus (T2DM) do not exercise. When compared to the general population, 9% less of patients with diabetes of all ages meet the American Diabetes Association (ADA) standard for exercise.
Patients with diabetes have physical barriers to exercise. This population often has high body mass index (BMI) and other medical conditions like shortness of breath, arthritis, and heart issues, which may make it difficult to exercise.
Socioeconomic and psychological barriers exist as well – patients are impeded by costly fitness centers or exercise equipment and gear; or by not having walkways in their community that are accessible, of good quality, and safe. Some psychological barriers to exercise may include lack of time, poor weather, feeling tired or distracted by television or social media. Also, many patients report the dread of monotony and boredom that comes with treadmill or stationary bike exercise. Patients cite that not knowing how to perform a fitness activity is a barrier. On top of these barriers, patients with diabetes reported that their clinicians prescribed exercise programs that were vague or uninspiring.
To help overcome barriers, clinicians can recommend a specific regimen that is achievable by their patients. Exercising with others, turning exercise into a mandatory chore (walking the dog is less avoidable than simply choosing to walk), and incorporating technology such as smart watches can all make exercise more palatable. Jenkins and Jenks proposed hiking as an ideal activity to overcome exercise barriers.
Discussion
Diabetes is prevalent among people with ID and seriously impacts physical, mental, and socioeconomic wellbeing. Significant barriers exist for people with intellectual disability in accessing preventative healthcare services including screening for diabetes risk While exercise offers many health benefits for people with diabetes, there exists many real and perceived barriers to exercise for people with intellectual disability. Although it appears that efforts to prevent diabetes in the population with ID are sorely lacking, there are some exceptional opportunities to engage in exercise and receive tailored healthcare screenings particularly suited for people with ID.
One such model is Special Olympics, which encourages regular participation both in competitions and practices that are inclusive for people with ID. Special Olympics sports have certified coaches that can teach new athletes how to play the sport. Travelling around the local area to compete against different teams creates a social environment, unlike solitary exercise, such as the treadmill. Additionally, Special Olympics reduces the barrier of cost by offering free training and admission to competitions to qualified athletes.
Further, Special Olympics offers free health screenings for all interested participants through the Special Olympics Healthy Athletes®. This program includes screenings in multiple disciplines, including: podiatry, physiotherapy, audiology, vision, dentistry, preventative and general medicine, and mental health. These screenings may thus be a mechanism to identify risk factors for diabetes, and may, in fact, be an intervention to mitigate risk for diabetes.
Fit Feet (Podiatry), a Healthy Athletes® discipline, offers free podiatric screenings for athletes. Given the heightened awareness for the associated medical problems seen with of diabetes, the high prevalence of diabetes mellitus in persons with intellectual disability and the correlated risk for diabetic foot ulcers (DFUs), the Fit Feet screening now includes diabetes screening questions on the athlete intake form as well as additional assessments included in the Fit Feet physical examination. Specifically, the Fit Feet clinical screening now includes examination of foot pulses, presence of sensation responsible for signaling pain, and identification of bony prominences that could result in points of irritation that may contribute to the development of an ulcer. These updates to the Fit Feet screening will be crucial in preventing foot health complications related to diabetes in those with ID. Simple screening for risk factors takes place and although no actual diagnosis is made, noting identifiable risk factors may then warrant a referral to the appropriate health care provider for a definitive diagnosis and care.
Conclusions
Given the increased risk and prevalence for diabetes in persons with ID, it's highly important to reduce the risk factors through established diabetes prevention approaches including health screenings and programs that support healthy lifestyle changes such as physical fitness. Special Olympics is uniquely suited to reach this population and promote early identification of diabetes risk factors and related health conditions among its athletes. The recent inclusion of screening for diabetic foot ulcers in its Fit Feet program is one such example, with similar opportunities in other disciplines of health screening. The importance of enhancing access to diabetes prevention, diagnosis, and education for persons with intellectual disability cannot be overstated, Special Olympics Healthy Athletes® program represents one such example that is tailor-made for this population. Additionally, those providers that care for individuals with intellectual disability should consider including those patients in a higher risk category for diabetes, and screen and educate or refer accordingly.
Left to right: Bethany Robinson, Nikki Jacobus, Catherine Ly, David Jenkins
About the Authors
David W. Jenkins, DPM, FAAPSM, Professor, Arizona College of Podiatric Medicine, Midwestern University Fellow of the American Academy of Podiatric Sports Medicine & American College of Foot and Ankle Surgeons, Clinical Faculty Advisor, Special Olympics Fit Feet, Faculty Advisor for the Midwestern University Student Chapter for American Academy of Developmental Medicine and Dentistry and Recipient of the Global Golisano Health Leadership Award
Nokki Jacobus, BS (as of 6-2-26 Degree will be DPM) 4th Year Podiatric Medical Student, Arizona College of Podiatric Medicine, Midwestern University, Vice-President, Midwestern University Student Chapter for the American Academy of Developmental Medicine and Dentistry
Bethany Robinson, BS (as of 6-2-26 Degree will be DPM) 4th Year Podiatric Medical Student, Arizona College of Podiatric Medicine, Midwestern University, Member, Midwestern University Student Chapter for the American Academy of Developmental Medicine and Dentistry
Catherine Ly, BA, 3rd Year Podiatric Medical Student, Arizona College of Podiatric Medicine, Midwestern University, Member, Midwestern University Student Chapter for the American Academy of Developmental Medicine and Dentistry
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