NADD U.S. Policy Update (from the NADD Bulletin Volume X1 Number 5)

Complete listing

Preventable and treatable medical comorbidities and adverse drug events in people with ID/MH

Laurie Charlot, PhD


Few studies report the prevalence or nature of medical problems experienced by persons with intellectual disabilities (ID) treated for psychiatric illness (Charlot, Abend, Ravin, Mastis, Hunt & Deustch, manuscript in preparation). This, despite the fact that for people with ID physical distress is often associated with changes in mood, mental status and behavior, as a significant "setting event" (Gardner & Whalken, 1996, Gunsett, Mulick, Fernald & Martin, 1989; Carr, Smith, Giacin, Whelan, & Pancari, 2003).  Medical causes for agitated behavior are frequently missed (Abend & Silka, 1999, Ryan & Sunada, 1997) because people with ID are poor reporters of their own health problems.  Also, individuals with limited expressive language often show the same externalizing behaviors at different times, for different reasons. These behaviors act as a  "final common pathway" for distress (Charlot, Doucette & Mezzacappa, 1993). 


The potential cost for poor outcomes related to missing or underestimating the impact of medical problems on behavior, both in suffering and in health care dollars, is likely quite high.  People with ID are known to have high rates of medical problems when compared to people without disabilities. Having a mental health disorder may elevate risk for other health problems in persons with ID (Kwok, 2007). Most estimates suggest about 40% of people with ID have a psychiatric disorder, and as many as 60% are treated with psychoactive medications. It is important to know if some of these individuals have treatable or preventable health problems or adverse drug events (ADEs). Recent investigations have emerged highlighting the enormous impact of health problems suffered by persons with serious mental illness, often associated with morbidity and mortality rates many times greater than those reported for people without psychiatric disorder (Connolly & Kelly, 2005). 


In addition to many lifestyle factors associated with chronic mental illness that appear to adversely affect health outcomes, recent research points to a rise in risk for specific medical problems related to  psychopharmacologic treatment including obesity, hypertension and diabetes.  It is unclear to what extent these same problems or different ones affect people with ID/MH (Mackin, Bishop, Watkinson, Gallagher & Ferrier, 2007).  At least some differences in health related morbidity are likely to be identified related to associations between ID and an array of genetically determined risk factors.  In some cases, people with ID share common concerns with older individuals without ID, who also have high rates of medical problems, and frequent treatment with psychoactive medications in non-specific ways (eg to reduce "agitation").   In light of recent findings from the Tyrer et al. (2008) study, it seems timely to learn more about side effects, as well as health issues we may routinely miss in our patients with ID/MH. 


We recently conducted a retrospective review of 198 consecutive admissions to an inpatient psychiatric service for people with ID and found high rates of medical comorbidity (Charlot, Abend, Ravin, Mastis, Hunt & Deustch, manuscript in preparation). In many cases, inpatients with ID were agitated or experienced significant mental status changes that were primarily a product of a non-psychiatric medical problem.  A variety of health problems were seen to provoke changes in behavior and mood, including constipation, GERD, UTIs, ear infections, dental pain, skin infections, neuroleptic induced movement problems such as akathsia and dsytonias, excessive sedation, delirium, sleep apnea, hypothyroidism and diabetes.  For many individuals, improvement in medical problems was a critical component of subsequent behavioral improvements.  Though the inpatients appeared to have fairly low rates of psychosis, 73% received treatment with at least one antipsychotic drug.  Many inpatients were treated with multi-drug regimens and had recently experienced multiple drug changes.


More systematic and focused research is needed to examine types and rates of preventable and treatable medical problems and ADEs in people with ID/MH. 

Such problems could be better appreciated and reduced by:


·Increased government support for research exploring the relationship between health and mental health in people with ID

·Development of screening tools and assessment guidelines to increase early detection

·Initiatives addressing the prevention of common medical problems and preventable ADEs, i.e. educational programs aimed at caregivers, case managers, various clinicians, inpatient psychiatric programs, ER programs, and especially MDs to alert care providers to unique issues affecting people with ID/MH

·Collaborations with payors and governmental agencies to explore the need for individuals with severe psychiatric problems and ID to have access to multidisciplinary medical care, longer medical appointments and clinician reimbursement for additional work required to provide adequate care to individuals with highly complex needs. (Targeting people treated with multiple psychoactive medications or who have frequent "psychiatric" relapses, emergencies and inpatient stays.)

·Initiatives aimed at promoting wellness, addressing the unique needs of people with ID/MH including programs that promote use of art, music, sports, exercise, and healthy diets. Education to promote recognition of the key role of meaningful engagement in wellness.


Contact: Lauren Charlot, Ph.D.