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Caring for Patients with Disabilities
Novel Educational Training Programs

ARTICLE IN BRIEF

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DURING THEIR CLINICAL ROTATION in neurology, medical students at New York University School of Medicine spend time in an inpatient rehabilitation unit where people with severe neurological disabilities are treated.

The article looks at efforts by medical schools to integrate training and curricula on working with people with disabilities, including a novel program at Stanford Medical School that aims to engage medical students with young patients with neurological disabilities.

During his first year of residency at the Lucile Packard Children's Hospital at Stanford University, Jonathan Santoro, MD, enjoyed taking medical students on rounds. “I had one patient, a girl of about eight, with cerebral palsy and flexion contractions in her upper extremities. She was nonverbal,” he recalled. “When I asked one of the medical students what was going on with this particular patient, he admitted that he had not examined her. He said he didn't know how.”

It turned out that none of the students did. “It was a big challenge for them. They had no previous experience with patients with neurologic disabilities before, and they didn't know how to approach or communicate with them,” said Dr. Santoro, a pediatric neurologist who completed his residency in 2015 and has remained at Stanford Medicine.

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DR. ANDREW SYMONDS: “What we are trying to teach medical students focuses not on the specifics of particular conditions that lead to disability, but the principles of dealing with disability as a healthy care provider. You need to understand the particular challenges faced by patients with specific disabilities, of course, but its primarily about patient-centered care.”

Dr. Santoro began researching the attitudes of medical students and health care providers working with patients with physical disabilities. While most medical students tend to have a favorable attitude toward people with disabilities, many — like the Stanford students — express feelings of fear and discomfort.

One study by a team of family clinicians in upstate New York showed that these emotions, coupled with the lack of understanding and experience, can often interfere with their ability to provide optimal care. He wondered whether there was any specific training given to medical students in working with patients with disabilities.

Dr. Santoro asked a colleague, pediatrician Elizabeth Stuart, MD, about this gap and discovered that developing some sort of program to prepare medical students to examine and treat patients with disabilities had been on the school's “to-do” list for more than 15 years. Dr. Stuart is Stanford's assistant dean for clerkship education. She encouraged him to develop a program.

He teamed up with Emily Whitgob, MD, a developmental pediatrics fellow and former special education teacher. Together they developed a model curriculum that would help students understand various types of disability, use person-first language (referring to people with epilepsy, for example, not epilepsy patients), and learn how to adapt bedside examination and history collection techniques with patients and families of those with disabilities.

While creating the curriculum, Dr. Santoro found that Stanford wasn't alone: education for medical students on caring for patients with disabilities is lacking nationwide. A 2009 survey published in the International Journal of Oral Science found that 81 percent of medical students reported no clinical training related to patients with disabilities, and more than 50 percent of deans said that such training was not a high priority.

A handful of other US medical schools have curricula focused on patients with disabilities; it is taught in some rehabilitation rotations at some medical schools. The most notable training program is the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, State University of New York. The curriculum was created in partnership with local disability advocacy groups. The coursework provides integrated education about caring for patients with disabilities into all four years of the medical school curriculum — from meeting patients and hearing presentations on the history of disability in year one, to standardized patient encounters in year two, to clerkship rotations in year three, and a full elective in primary care for people with disabilities in year four. Since the program's inception in 2008, approximately 750 medical students have participated in some aspect of the teaching program.

“There is an assumption in medical education that you'll learn about disability in your neurology rotation,” says Andrew Symons, MD, clinical associate professor of family medicine and vice chair for medical student education at the University of Buffalo, who helped spearhead the program's development.

“That's true, but it generally involves teaching about the mechanisms of different neurologic conditions, like cerebral palsy or neuromuscular disease,” he continued. “What we are trying to teach medical students focuses not on the specifics of particular conditions that lead to disability, but the principles of dealing with disability as a healthy care provider. You need to understand the particular challenges faced by patients with specific disabilities, of course, but it's primarily about patient-centered care.”

The Alliance for Disability in Healthcare Education reports that other schools, including the University of South Florida's Morsani College of Medicine, the University of Tennessee College of Medicine, the University of Massachusetts Medical School, and the University of South Carolina School of Medicine offer clerkships or invite patients with disabilities to participate in standardized patient encounters.

First year medical students at the New York University School of Medicine participate in an exercise that allows them to “roll a mile in the shoes” of a person with disabilities, said Alex Moroz, MD, director of residency training and medical education at the department of rehabilitation medicine at the medical school.

All medical students are asked to use a wheelchair for half a day, and are paired in simulated role-playing situations as caregiver and patient, he said. Using the wheelchairs, they are asked to use public transportation and to access restrooms, clinical care areas, restaurants, classrooms, and other public spaces. The students also are tasked with feeding themselves with a sock on their hand and wearing sunglasses that limit light, among other scenarios.

Medical students share their experiences in panel discussions with people who are disabled about their successes, barriers, and challenges in general. First year physical medicine and rehabilitation residents participate in the panel together with the first year medical student class.

During their clinical rotation in neurology a year or two later, students spend time in an inpatient rehabilitation unit where people with severe neurological disabilities are treated, thus closing the loop.

The Ohio State University Onisonger Center integrates medical curricula about working with people with autistic spectrum disorders throughout the four-year educational program, including panel discussions with people who have developmental disorders and autism, home visits, and participation in interdisciplinary clinics.

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DR. JONATHAN SANTORO: “When I asked one of the medical students what was going on with this particular patient, he admitted that he had not examined her.”

The Stanford program appears to be the first developed by a neurologist and one that is focused on a neurology curriculum. The program, with its focus on pediatric patients with neurological disabilities, rolled out in early 2016. Dr. Santoro hopes it will become broader and branch out to include adult populations.

“We didn't want just another lecture,” said Dr. Santoro. “The goal was to get the students at the bedside, talking to families together and focusing on the little things that get missed. For example, how do parents who have a nonverbal child know when their child is sick or in pain? What are the signs?”

The curriculum is now in a six-month trial period that involves two separate two-hour blocks during the students' one-month inpatient clerkship rotation. The first half of that time is dedicated to the discussion of disability and health care; the students then get to shadow Dr. Santoro and Dr. Whitgob at the patient's bedside while they perform physical and neurologic examinations and talk with patients and families.

Third-year medical student Jassi Pannu was recruited to take part in the program while on her pediatrics rotation. “We learned a lot during the first part of the rotation that challenged our preconceptions about disabilities, and then during the second half we got so much experience with different patients with disabilities,” she said. “As a 24-year-old, my life has been mostly filled with healthy people. It's been eye-opening to be introduced to so many people with disabilities, including kids near our own age.”

She admitted that she felt uncomfortable at first. “When you first encounter a child who is developmentally delayed and nonverbal it's hard to form a connection right away because you're used to communicating verbally and doing things a different way. The program helped me learn to form connections in nontraditional ways.”

Pannu described a five-year-old nonverbal girl with developmental delays who was always smiling, but “I couldn't tell what she was thinking because she was unable to speak. Jon would hold her hand and play little games with hands, and as soon as she walked in the room she'd grab his hand and hold it the whole time.”

After the rotation, Pannu said she definitely feels more comfortable caring for patients with disabilities. “I don't see how anyone practicing pediatric neurology, or neurology in general, wouldn't benefit from a program like this. I think it's essential. You're going to come across patients with disabilities in your profession and you need to be at ease caring for them.”

After the six-month pilot, Dr. Santoro plans to wrap it up in the fall and assess its success with the help of pre-and post-rotation surveys. “Do students' attitudes about disabilities, their knowledge levels, and their comfort level change with the intervention? When we have data to back that up, we hope to spread it throughout the clinical departments at Stanford and hit most medical students as they rotate through their clinical clerkships,” he said. “This addresses a significant need. We want doctors, no matter what field they go into, to be more attuned to dealing with patients with any form of disability.”

LINK UP FOR MORE INFORMATION:

• Alliance for Disability in Healthcare Education. www.adhce.org
    • Sarmiento C, Miller SR, Chang E, et al. From impairment to empowerment: A longitudinal medical school curriculum on disabilities http://journals.lww.com/academicmedicine/Abstract/publishahead/From_Impairment_to_Empowerment___A_Longitudinal.98684.aspx. Acad Med 2015: Epub 2015 Sep. 25.