Inequities in Preventive Care for Adults with Intellectual and/or Developmental Disability in the USA: A Narrative...

A primary care physician cares for two female siblings in their 40s - one with Down syndrome, and one without. The sister without Down syndrome receives her Pap smears scheduled in accordance with national guidance. Meanwhile, this screening is repeatedly deferred for the sister with Down syndrome due to the assumption that she could not easily tolerate the exam. Concerned about her cervical cancer risk, the patient's sister takes her to a gynecological clinic that specializes in serving those with disabilities. Utilizing simple accommodations such as picture-based explanations and thoughtful anxiolytic administration, her sister was able to get her first Pap smear two decades later than recommended. The samples, fortunately, were negative for HPV and cervical dysplasia. This real-life example on the patient level demonstrates a problem widespread on the population level: the inequitable administration and uptake of preventive care in individuals with intellectual and/or developmental disabilities (IDD). Studies have shown that these patients receive primary and secondary prevention methods such as vaccines and cancer screenings for breast, cervical, and colon cancer, at lower rates than the general population. Yet their need for this care is the same, if not higher -these patients are diagnosed at later stages and suffer higher mortality rates for these malignancies. In this narrative review, we examine disparities in preventive care utilization for US adults with IDD and describe barriers on the patient, clinician, and system levels. We then explore potential strategies to expand access, including alternative screening modalities and models of care delivery. Recognizing and addressing modifiable barriers to this care are essential to addressing preventable morbidity and mortality in this population.