Recommendations on Standards for the Design of Medical Diagnostic Equipment for Adults with Disabilities, Advisory Committee Final Report

8.1 Excluded Populations Needing Future Attention

The statutory authority of the MDE Advisory Committee applied only to adults with disabilities not to pediatric populations. Significant advances in medical care now allow individuals born with formerly life-threatening, disabling conditions – and those who acquire such conditions in childhood – to live into early adulthood, middle-age, and sometimes old age. The numbers of children and youth under age 18 living with disabilities is growing and will continue rising in coming decades. Some of these children and youth require intensive diagnostic testing and therapeutic interventions to maintain and promote their health. These individuals and other children and youth with disabilities will also need the same routine care (e.g. annual visits), preventive services, and episodic care (e.g., diagnosis and treatment of accidental injuries) as do other persons younger than 18 years old. Therefore, future efforts must consider standards to ensure that medical diagnostic equipment is accessible to children and youth with disabilities.

Because of time, information, and feasibility constraints, the MDE Advisory Committee decided early in its deliberations not to address specific standards for ensuring that medical diagnostic equipment is accessible to individuals disabled by extreme obesity.^PP Committee members across the various stakeholder groups endorsed the urgency of addressing this topic. In support, various Committee members cited reports from the Centers for Disease Control and Prevention (CDC), which tabulates data on obesity among individuals within states and nationwide. CDC figures document significantly increasing rates of obesity over the last 20 years among Americans of all ages. More than one-third (35.7%) of U.S. adults are obese (http://www.cdc.gov/obesity/data/facts.html). Especially worrisome, 16.9% of American children and adolescents are obese, portending another generation of obese adults. Of special note, rates of extreme obesity have also risen. Largely because of the critical importance of this growing population, Committee members felt that addressing this topic thoughtfully and comprehensively was infeasible, requiring more time, information, and resources than were available.

The MDE Advisory Committee recognized that certain individuals at the extreme end of the weight continuum may have difficulty accessing medical diagnostic equipment without specific accommodations to address their weight-related needs. Committee members spent some time trying to define this population using standard metrics, such as the body-mass-index (BMI), and seeking guidance from information available from the CDC and the World Health Organization. However, the MDE Advisory Committee did not reach consensus on a specific BMI level or levels for defining disability among individuals who are obese, especially for extreme or severe obesity. Notably, no anthropometric data are available for obese individuals.

Given the large numbers of persons who are obese, specific medical services have emerged that address needs specific to the evaluation and treatment of obesity. These services, often grouped under the broad title of “bariatric services,” have generated equipment designs specifically for their diagnostic and therapeutic care settings. However, persons disabled by extreme obesity also require the same range of clinical services as do other individuals. Without special accessibility features, equipment outside non-bariatric care settings may not accommodate these individuals, perhaps delaying the diagnoses and treatment of other health conditions. Without anthropometric information, the Committee would have found it difficult to make meaningful recommendations to improve MDE accessibility for these individuals. As noted, future initiatives will need to address this topic.

Notes

^PP The Advisory Committee spent considerable time trying to: (1) choose appropriate language for describing this population subgroup; and (2) find explicit parameters for what constitutes extreme or severe obesity. Many Committee members, including the Editorial Committee, rejected the word “bariatric” to describe these individuals because “bariatric” is typically used specifically to indicate particular types of services or service settings. Not all persons with severe obesity will chose bariatric services. The word “morbid,” often used before obesity (“morbid obesity”), carries connotations of the consequences of obesity that made some Committee members uncomfortable. The Editorial Committee settled on using the common adjectives “severe” or “extreme” that are employed in many contexts to identify values at the high end of a continuum of values. As noted in the text, although Committee members searched for definitions of extreme obesity among prominent public health organizations (e.g., Centers for Disease Control and Prevention, World Health Organization), we could not find a consensus definition of extreme obesity. The Committee intends for the phrase “extreme obesity” to represent individuals at the highest end of the weight continuum, who often have a body habitus or physique that necessitates diagnostic medical equipment designed specifically to accommodate their needs.