New research highlights potential for improved communication with patients with developmental disabilities

New research highlights potential for improved communication with patients with developmental disabilities

Among physicians who see at least one adult patient with significant intellectual disability (ID) in an average month, nearly 75% of respondents say they usually or always communicate with someone other than the patient during the visit, according to a new study.

These results suggest that communicating primarily with patients with ID is the exception rather than the rule, which is contrary to what is considered best medical practice, says lead researcher Eric Campbell, PhD, director of research at University of Colorado Center for Bioethics and Humanities. and professor of internal medicine at the CU School of Medicine. Findings may also be linked to reduced access to high-quality health care among adults with ID.

“One of the benefits that could come from this study is awareness,” says Campbell. “It can help doctors realize, ‘Hey, I’m mostly communicating with the caregiver here rather than the patient.’ We might even begin to explore interventions that would help physicians direct their questions and discussions to the patient.

Ask the doctors

This analysis was part of a larger study funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and led by senior researcher Lisa I. Iezzoni, MD. The study involved a national survey of physicians providing outpatient care to adult patients with five different types of disabilities, including a module on intellectual disability. Although numerous studies of patients with disabilities have documented health care disparities, little research has sought physicians’ perspectives on caring for this population.

“In our early work addressing this issue through focus groups and interviews, physicians talked about the challenges associated with caring for these patients in terms of communication, and also talked about sedation patients for routine medical procedures,” says Campbell. “Our intent in the study was to better understand physicians’ unique experiences in caring for this specific patient population.”

More than 700 physicians from across the United States who represent seven different specialties and see patients with ID in an outpatient setting responded to surveys. Survey questions included: “When you see patients with significant intellectual disabilities, how often do you primarily communicate with someone other than the patient?” and “When you see patients with significant intellectual disability, are these patients already sedated in order to perform routine office tests or treatments (e.g. blood tests, pap smears, etc.) ?”

Communicate with patients

After analyzing the survey data, Campbell and his co-researchers found that 18.6% of physicians reported seeing no 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 significant ID, women, youth, primary care physicians, and rural physicians were more likely to see patients with ID.

The finding that about 75% of physicians report communicating primarily with someone other than the patient during an appointment highlights that “clinically, this is a very nuanced issue,” says Jaime Moore, MD, Assistant Professor of Pediatric Nutrition, former Leadership Education in Neurodevelopmental Disabilities (LEND) Fellow through JFK Partners at CU School of Medicine and co-author of the study. “Some of the considerations we can think about include the patient’s ability to communicate and the preferred method of communication – whether verbal, written, in pictures or using assistive technology. Are the patient’s communication preferences clearly documented and does the typical workflow of a busy clinic allow alternative communication paths to be accommodated appropriately? »

Since communicating directly with the patient, rather than with the caregiver or accompanying companion, is considered best medical practice, it is important to understand the levels of physician exposure to the care of patients with DI. Communication practices specific to people with ID haven’t been commonly taught in medical schools, Campbell says, “so that’s something we can start discussing, how do we help doctors learn those skills?”

Understanding the use of sedation

“We also wanted to understand this idea of ​​using sedation, which represents a spectrum of treatment ranging from a pill to help the patient calm down while still awake and able to respond, to a state where the individual is asleep and may or may not need help breathing,” says Campbell, adding that the decision to use sedation is not one that doctors make lightly or spontaneously.

“The fact that more than 11% of physicians reported using sedation raises several additional questions for me,” Moore says. “Physicians must balance a potential delay in diagnosing a medical condition like cervical cancer or diabetes if a patient has strong fear or physical discomfort during a Pap smear or taking of blood, respectively, with the potential risks of providing a sedative to facilitate these procedures. Using the least invasive approach for this person without compromising their health or safety and maintaining strong relationships and access to care can be complex.

Campbell points out that the study’s approach was neutral and did not pass judgment on doctors’ treatment choices, “but only to get an estimate of how often sedation occurs.” Then we can start looking at the factors associated with it and how we minimize the potential for harm. A doctor wouldn’t want to skip a procedure because the patient might be uncooperative – that would be unethical – but they also wouldn’t want to sedate just because the patient has ID, which would violate its autonomy.

Better Care, Better Outcomes

Based on the data from this study, further research could dig deeper into the decision-making that guides the use of sedation, as well as how to provide physicians with the tools to communicate more effectively with adults who have ID. important.

“My bioethics colleagues have taught me that ethics is truly embedded in every clinical decision we make, but some clinical decisions can evoke a greater sense of discomfort or tension that we need to overcome,” Moore says. “The unique needs of this population may put them more in the fore than those of other subpopulations, but if physicians have the training and tools, then they are better able to provide care in an equitable manner. »

Such tools have not been integrated into medical education or professional training in a standardized way, says Campbell, “but what is unique about CU is that we are in a center for biomedical ethics, but our charge is to conduct research that informs policy and practice. I think the data from this study is a great first step, but we need an even stronger database to provide physicians with the tools they need and minimize the mortality gap we still see in this population.The goal is better care and better outcomes.


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