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February 21, 2018

Research establishes questions to address unmet needs of patients with disabilities

By Adam Harringa

To address inequities for patients with disabilities, research led by Mayo Clinic has established six essential questions for health care organizations to ask at the point of care. The broad, evidence-based questions are a first step in determining unmet needs of individual patients for whom disabilities are not always easily identified, the researchers say.

Mayo Clinic has incorporated the questions into its electronic health record, currently in use by nurses for in-patient care. Eventually, the researchers hope, the questions will be implemented throughout Mayo. There are also plans to include the questions in the international Logical Observational Identifiers, Names and Codes (LOINC) database, a standardized coding of medical laboratory tests and patient care data sets for use across health care systems.

“The majority of disabilities aren’t immediately apparent,” says John Knudsen, M.D., medical director for the Clinical Practice Office of Health Equity and Inclusion. “This is an important step toward understanding our patients’ needs in regards to disabilities, whether that’s permanent or temporary.”

The questions, published recently in The Joint Commission Journal on Quality and Patient Safety, can be used when making an appointment to identify patients who may need hearing assistance, for example. Clinicians could provide an adjustable exam table for patients with mobility issues, or communication assistance for those with difficulties being understood.

“Literature shows that people with disabilities get suboptimal care. They’re not getting the same type of preventative treatment and chronic disease management that people without disabilities are getting,” says the study’s senior author, Joan Griffin, Ph.D., a scientific director in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. “These are yes or no questions, they’re relatively easy, and they can then lead to deeper questions about specific accommodations.”

The cross-specialty team of researchers used a multistage process to identify and refine the questions. First, they held a focus group of 54 patients and caregivers from southeastern Minnesota and interviewed 15 health care providers. Next, national disability organization leaders and research authors participated in a panel to modify the questions. And finally, the researchers refined the questions further after interviewing 46 patients with and without disabilities.

The six essential questions are:

  • Are you blind or do you have difficulty seeing, even when wearing glasses?
  • Are you deaf or do you have serious difficulty hearing?
  • Do you have serious difficulty walking or climbing stairs?
  • Do you have difficulty remembering or concentrating?
  • Do you have difficulty dressing or bathing?
  • Using your usual language, do you have difficulty communicating (for example, understanding or being understood)?

The researchers also recommend three additional questions:

  • Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone, such as visiting a doctor’s office or shopping?
  • Do you have difficulty reading or writing?
  • Due to a disability, do you need any additional assistance or accommodations during your visit?

The questions are based on U.S. Census Bureau disability questions, which were also used by the U.S. Department of Health and Human Services. But those questions were developed for large surveys of populations, not for health care organizations to identify individual patients who may need accommodations, the researchers say.

The essential questions cover the spectrum of disabilities: hearing, visual, mobility, cognitive, activities of daily living/fine motor, and communication. The additional recommended questions also cover additional activities of daily living, learning disabilities, and any disabilities that may have been missed.

The researchers did not include mental health or social disability questions among the six essential questions, though some of these disabilities may be covered by the existing questions. The focus group and interview participants had significant concerns about including a mental health question, which would be recorded in patients’ individual electronic health records, because of the stigma associated with mental health issues.

Health care organizations will have to determine which questions to ask and how frequently to ask, as disability status may change over time, the researchers say.

The research was supported by the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. The study was led by Megan Morris, Ph.D., who was a researcher in the center at the time. Dr. Morris is now an assistant professor at the Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS) at the University of Colorado Anschutz Medical Campus.

To learn more about Mayo Clinic’s efforts to address health disparities through research, visit the Office of Health Disparities Research blog.

Tags: Center for the Science of Health Care Delivery, Findings, health disparities

What about those of us who live with chronic pain? I have several so-called "invisible diseases", several of which have pain as a major factor. I have tried to talk to my doctor about this but it just goes right over his head and he tends to blow off comments about my pain.

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