New research highlights potential for improvement in communication with patients with intellectual disabilities

Among clinicians who see at least one adult patient with a significant intellectual disability (ID) in an average month, nearly 75% of those surveyed usually or always communicated with someone other than the patient during a visit, New search appears.

These findings suggest that communicating primarily with patients with intellectual disability is the exception rather than the rule, which goes against what is considered best medical practice, says lead researcher Eric Campbell, Ph.D.Research Director at University of Colorado Center for Bioethics and Humanities and professor Internal Medicine in CU medical school. The findings may also be related to reduced access to high-quality health care among adults with intellectual disability.

“One of the benefits that this study can yield is awareness,” Campbell says. “That might help clinicians realize, ‘Hey, I’m primarily communicating with the caregiver here rather than the patient.'” “We can even begin to explore interventions that would help clinicians direct their questions and discussions toward the patient.”

Survey Doctors

This analysis was part of a larger study funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development led by Lisa Izzoni, MD, the principal investigator. The study included a national survey of physicians providing outpatient care to adult patients with five different types of disabilities, including a special unit for intellectual disability. Although many studies of patients with disabilities have documented disparities in health care, little research has sought clinicians’ views on the care of this population.

“In our early work to address this in focus groups and interviews, we had clinicians talk about the challenges associated with caring for these patients in terms of communication, and we also talked about sedating patients for routine medical procedures,” Campbell explains. “Our goal with the study was to better understand clinicians’ unique experiences in caring for this specific group of patients.”

More than 700 physicians from across the United States have completed seven different specialties and see patients with intellectual disabilities in an outpatient setting. Survey questions included, “When you see patients with significant intellectual disability, how often do you primarily communicate with someone other than the patient?” and “When you see patients with significant intellectual disability, are those patients sedated for routine tests or treatments in the clinic (eg, blood draws, Pap smears, etc.)?”

Communicating with patients

After analyzing survey data, Campbell and colleagues found that 18.6% of clinicians reported not seeing adult patients with significant ID in an average month, while nearly 20% saw six or more adult patients with significant ID each month. Among physicians who reported seeing at least one adult patient with a large ID, female and younger physicians, primary care physicians, and rural physicians were more likely to see patients with intellectual disability.

The finding that about 75% of physicians primarily reported communicating with someone other than the patient during the appointment confirms that “this is a really clinically accurate issue,” he explains. Jamie Moore, MDHe is an assistant professor kids nutritionD., a former Fellow in Leadership Education in Neurodevelopmental Disabilities (LEND) through JFK Partners at CU University School of Medicine, and a study co-author. Some of the considerations we can think of include the patient’s ability to communicate and the preferred method of communication – whether verbal, written, visual, or using assistive technology. Are the patient’s communication preferences clearly documented, and does the typical busy clinic workflow allow for adequate uptake of alternative methods of communication? “

Because direct contact with the patient, and not with the accompanying caregiver or companion, is considered medical best practice, it is important to understand physicians’ levels of exposure to the care of patients with intellectual disability. Campbell says that communication practices for people with intellectual disabilities are not commonly taught in medical schools, “so we can start to discuss this, how do we help clinicians gain these skills?”

Understand the use of calming

“We also wanted to understand the idea of ​​using sedation, which is a spectrum of treatment from birth control pills to help a patient calm while still awake and able to respond, to a situation in which an individual is asleep and may or may not need breathing support,” Campbell explains, adding that the decision The use of anesthesia is not taken lightly or spontaneously by doctors.

“The fact that more than 11% of physicians reported using anesthesia raises several additional questions for me,” Moore says. “Physicians have to weigh the potential delay in diagnosing a medical condition such as cervical cancer or diabetes if the patient has extreme fear or physical discomfort during a PAP swab or blood draw, respectively, with the potential risks of providing a sedative to facilitate those procedures. Use of The minimally invasive approach to that individual without compromising health or safety and maintaining a strong relationship and access to care is complex.”

Campbell stresses that the study’s approach was impartial and not a judgment of the doctors’ treatment options, “but really just to get an estimate of how often anesthesia occurs. Then we can start to look at the factors involved, and how we can reduce the potential for harm. The doctor will not want to Skipping a procedure because the patient might be uncooperative – that would be unethical – but they also don’t want anesthesia just because the patient has an ID, which violates their independence.”

Better care, better results

Based on the data from this study, more research could delve into the decision-making process that guides the use of anesthesia, as well as how to provide clinicians with the tools to communicate more effectively with adults who have an important identity.

“My fellow bioethicists have taught me that ethics are really embedded in every clinical decision we make, but that some clinical decisions may elicit a greater sense of discomfort or stress that we have to work through,” Moore says. “The unique needs of this population can put them ahead of other subpopulations, but if clinicians have the training and tools, they will be better able to provide care in an equitable manner.”

Such tools are not integrated into medical education or professional training in a standardized way, Campbell says, “but the unique thing about CU is that we are in a center of biomedical ethics, but our mission is to do research that guides policy and practice. I think the data in this study It’s an excellent first step, but we need a stronger evidence base to give clinicians the tools they need and reduce the mortality gap we still see in this population. The goal is better care and better outcomes.”

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