The Last Word: Aging, Intellectual Disabilities, and Missed Diagnoses
Advancements in medicine have improved the average life expectancy for most people, including those with intellectual and developmental disabilities (IDDs). However, many health care providers are ill-equipped to recognize and diagnose common age-related health conditions in people with IDD. These patients often lack the ability to effectively communicate their symptoms, leading to missed or incorrect diagnoses by even the most skilled physicians. IDD-specific clinical education for all health care providers is critical to addressing these health inequities.
People with IDDs are living longer, in part, because of advances in medical care.1 In 1983, the average age of death for someone with Down syndrome was 25. Today, it is over 60. As people with IDD age, they face the same health conditions that those without IDD experience later in life. Arthritis begins to creep in. Hearing and vision changes may occur. And the risk of cancer increases. Ensuring clinicians can meet the health care needs of aging people with IDD is essential to prevent unnecessary suffering and untimely death.
The competency of most primary care clinicians to treat many of the health care issues associated with aging is of minor concern. Most clinicians are well-versed in arthritis treatments, managing preventive screenings; treating the long-term effects of hypertension, diabetes, and osteoporosis; and recognizing other age-related changes in their patients. But for many people with IDD, presenting signs and symptoms of commonly seen health conditions may be very different from those we see in people without an intellectual disability.
In many cases, this is due to the different ways that people with IDD may communicate. For many, the ability to verbally express their needs or what symptoms they are experiencing can be severely limited or even nonexistent. Because of this, we often see the emergence of adverse behavior as the first sign of pain or discomfort. And for the unaware clinician, behavioral changes are frequently attributed to the person’s disability. This is a phenomenon called “diagnostic overshadowing.”
Diagnostic overshadowing was the subject of The Joint Commission’s Sentinel Event Alert number 65, released on June 22, 2022.2 The Commission contends that diagnostic overshadowing is harm that stems from cognitive bias. This bias contributes to health disparities and is of particular concern in groups that are at greater risk, such as those with IDDs, and can result in a failure to deliver a proper diagnosis. The Joint Commission’s alert signifies a departure from clinically accepted principles of developing a differential diagnosis.
One of the glaring factors relating to the prevalence of diagnostic overshadowing in people with IDD is that most clinicians have had little training in treating people with IDD.3 Because of this, many behaviors are seen as “just something that people with IDD do.” What often follows is a psychiatric referral for an assessment of the adverse behavior, which frequently results in the person being started on psychotropic medication to control the behavior.4
Let’s imagine for a minute that you have gastroesophageal reflux, but you cannot verbally express your symptoms to anyone. Over time, you may learn that you have terrible burning pain in your chest and throat every time you eat a meal. As supporters attempt to ensure you are eating adequately, you associate the presence of food with pain and knock the plate from the table or become aggressive with a supporter who may be attempting to assist you to the dinner table. Behaviors like these often result in the initiation of psychotropic medication. The person continues to suffer from the undiagnosed and treatable condition and is now on unnecessary medication with potentially significant side effects.
When we educate clinicians about the provision of IDD-competent health care, we save lives and reduce unnecessary suffering. Requiring clinical education for physicians, nurse practitioners, physician assistants, nurses, and other health care providers is paramount to addressing health inequities for people with IDD. I urge you to work with your local clinical practices, hospitals, and medical and nursing schools to incorporate IDD-specific clinical training for students and clinicians already in practice. And now, with the availability of eLearning courses, this type of training is more accessible than ever before. Providing foundational knowledge to all health care providers will improve health care for some of society’s most at-risk populations, ultimately improving health care for all.
— Craig Escudé, MD, is a board-certified fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and is the president of IntellectAbility.
2. The Joint Commission. Diagnostic overshadowing among groups experiencing health disparities. Sentinel Event Alert. June 22, 2022. https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety-topics/sentinel-event/sea-65-diagnostic-overshadowing-6-16-22-final.pdf. Accessed October 10, 2022.
3. Iezzoni LI, Rao SR, Ressalam J, et al. Physicians' perceptions of people with disability and their health care. Health Aff (Millwood). 2021;40(2):297-306.
4. Lunsky Y, Khuu W, Tadrous M, Vigod S, Cobigo V, Gomes T. Antipsychotic use with and without comorbid psychiatric diagnosis among adults with intellectual and developmental disabilities. Can J Psychiatry. 2018;63(6):361-369.