Melanie Hagen, MD FACP, Rebecca Pauly, MD FACPEva Egensteiner, MA, CPH

University of FloridaEllen D. S. Lopez, PhD, MPH

University of Alaska School of Public Health

Understand the prevalence and health status of patients living with disabilities in our population.

Gain knowledge of the components of our Disability Module for medical students.◦ Patient Perspective

Lecture Panel Photomaps and readings

◦ Practice Standardized Patients

Evaluation of our curriculum Future plans

What is ‘disability’?

“A feature of the body, mind, or senses that can affect a person’s daily life”

Disability can occur: At birth Due to sickness or injury With aging Over a short period or a lifetime

At some point in their lives, everyone will experience a disability*

Prevalence of disability* among adults: US, 2001-2005

62 million people report having a disabling condition

29.5% of the US population

As baby boomers age prevalence is rising.

No disability 71%

Disability 29.5%

Self-reported health status:

0%10%20%30%40%50%60%70%80%

Excel

lent/V

good

Fair/P

oor

With Dis*

No Dis

*

More people with disability report poorer health status

1/3 reported an excellent/very- good health status

◦ People living with disabilities have worse health status than those without disabilities.

◦ Resources for persons with disabilities to maintain health, prevent secondary conditions, and optimize wellness are inadequate.

◦ The failure of medical education programs to teach concepts of disability was identified as a root cause.

 

Educating Health Care Professionals to Care for Patients With DisabilitiesKristi L. Kirschner, MD; Raymond H. Curry, MD JAMA. 2009;302(12):1334-1335.

Disability and the training of health professionals.

Tom Shakespeare, Lisa Iezzoni, Nora E. Groce

The Lancet, vol 374, issue 9704, p 1815

November 2009

Introduction to the patient’s perspective.◦ How the patient navigates the world.

To show that the patient is not just the disability.◦ The patient with a disability is a person.◦ The patient has psychosocial needs.◦ The patient needs preventive care.◦ The patient can develop other medical problems

To make sure the student is comfortable taking a full medical history from the person with a disability.

To make sure the student is comfortable examining the patient.◦ Safety of patient and student

Lecture Panel of people with disabilities Photomaps Personal narrative readings Small group discussions Skills practice with standardized patients portraying

disabilities

http://withuss.phhp.ufl.edu/photomapping.htmFunding: Susan G. Komen for the Cure

Amie Slavin, a freelance writer, mother of two preschoolers, and “that blind woman” describes her craving for the “basic benignity and respect” of her fellow men, and her incredulity at being shouted at by her ophthalmic surgeon. 

The Lancet, Volume 374, Issue 9704, 1815 - 1816, 28 November 2009

Will Christian is a consultant in pediatric emergency medicine and describes how his medical training was affected, and enhanced, by his achondroplasia. 

The Lancet, Volume 374, Issue 9704, 1815 - 1816, 28 November 2009

We surveyed students’ knowledge and attitudes before and after the learning activities◦ Prior experience with disability care◦ Etiquette for caring for patients with disabilities◦ ADA regulations◦ Preventive care for patients with disabilities vs. those without

The students began with a high level of knowledge.

Students’ knowledge increased and attitudes changed ◦ On all but one of the objective questions, the students improved their

scores from pre to the post test.

Improvement in Student Scores after Module

0 20 40 60 80 100

Q7

Q8

Q11

Q23

All Questions

% questions correct

Post (%)

Pre (%)

P < .02

P < .001

P < .001

P < .007

When you see a patient using a wheelchair, you should assume that he or she needs help getting around the health care facility. (correct answer false)

When talking with a patient who uses a wheel chair, it is best to continue standing during your conversation. (false)

A healthcare provider knows the best positions for patients living with disabilities during a medical visit. (false)

Compared with women in the general population, women with disabilities have the same or greater change of developing breast cancer, yet, they are significantly less likely to have been screened with the recommended guidelines. (true)

When working with a patient who has a cognitive disability, it is best to avoid directions that involve knowing “right and left” and “west and east”.

◦ Pre Module 64.3% correct◦ Post Module 78.6% correct

Hearing from the patients themselves◦ “The stories of patients”◦ “The look into their daily lives was informative regarding their

struggles and viewpoints” ◦ “The panel was really a wonderful way to understand how

patients with disabilities feel and think.”

Asking not assuming◦ “Learning that the best care usually just involves asking the

patient their needs and expectations.”

Practicing with a standardized patient◦ “There is a lot that seems like common sense until you are in

the moment.”◦ “It really put on the spot to help the patient move around

while remaining conscious of their feelings.”◦ “Finding out how I would react in a real (practical) situation.”

“My standardized patient did not seem to be truly disabled.”

“I wanted to examine more types of patients with disabilities.”

“There were not enough patients on the panel.” “There were no patients with cognitive disabilities on

the panel.” “The information given seemed ‘obvious’ or

‘common sense.’”

Lecture vs. Panel vs. Photomaps vs. Readings vs. Practicing with patients

◦ Some students named the photomaps as most useful and some as least useful

◦ Some students had a hard time practicing with patients who were not “real.”

“The training opened my eyes to the lifestyle of patients with disabilities and the challenges they face in getting good healthcare. I was given practical guidelines on how to have a medical practice that accommodates them.”

Which increases student’s empathy more?◦ Reading a narrative description by a patient ◦ Watching videos of real patients

Seeing the Patient Perspective◦ Larger panel of patients◦ Patients with cognitive disabilities

Practicing◦ Physical Therapist Faculty lecture◦ Real patients◦ Advanced physical therapy students◦ Including ADLs and IADLs in the history◦ Keeping patient and student safe

We need to educate medical students about communicating with people with disabilities.

Our multifaceted curriculum was an effective start. Demonstrating the patient perspective in multiple

media may enhance the experience for students. Integrating real people with disabilities may improve

students’ comfort when the meet real patients with disabilities.

Funding◦ Susan B. Komen Foundation◦ University of Florida College of Medicine

Chapman Education Center (COMCEC) Faculty Educational Research Grants

Clerical and data analysis support◦ Jenika Christmas◦ Steve Hagen

Summer Project◦ Nina Stoyan-Rozensweig

Conceptual framework

Skills for assessing the level and functional consequence of the disability

General principles and etiquette for interacting with persons with disabilities

Knowledge resources in the health care system and the community

Legal requirements of the Americans with Disabilities Act (not just for the built environment)

Understanding quality of life from patients’ perspectives

People with disabilities have the same healthcare needs as others.

Do not assume that a patient is consulting you for something related to their disability.

Treat patients with respect for their autonomy and dignity.

Understand the experience of patients living with disability.

Form a partnership with patients with disabilities.

People with disabilities should be well represented in the health professions.