Disability Research

February 18, 2019

New Horizons

Robust research is being conducted throughout Michigan Medicine regarding disability health. Topics include the health outcomes of pediatric-onset disabilities across the lifespan, accessibility in medical education, neurogenic bowel and bladder issues, contraception and reproduction, the health literacy of people who use hearing aids, the development of adapted devices that assist physicians and other care providers who have disabilities when they are treating patients, and much more.

The Department of Physical Medicine and Rehabilitation, whose researchers are conducting many of the studies, is sixth in the country in NIH funding for disability-related research. It also receives major funding from other government agencies and foundations, notes Edward A. Hurvitz, M.D. (Fellowship 1989), the James W. Rae Collegiate Professor and chair of the Department of Physical Medicine and Rehabilitation.

Some of the recent and ongoing research is highlighted below.

Claire Z. Kalpakjian, Ph.D., M.S., associate professor of physical medicine and rehabilitation, is supported by the NIH and foundation funding to focus on the health of women with physical disabilities. She directs the new Program for Research on Women's Health and Disability (PROWHD), whose mission is to empower women with disabilities, and improve health and health care quality, by creating tools that enhance communication, knowledge, and decision-making.

She and her team are developing the first patient-reported outcome measures designed to address the gynecological and reproductive health of women with physical disabilities. The ultimate goal of this new measure is to enhance communication between patients and health care providers in clinical encounters to align health care with their special needs.

She and her team are also developing the first decision-making tool about pregnancy for women with physical disabilities. The goal of this tool is to enhance the knowledge women need to make good decisions about pregnancy and to enhance shared decision-making with health care providers. These projects directly tie to PROWHD's mission to empower women with disabilities by reducing the stigma and bias that many face in pursuit of relationships, intimacy, motherhood, and robust health.

Lisa Meeks, Ph.D., assistant professor of family medicine and a researcher in the Institute for Healthcare Policy and Innovation, was the lead investigator and author of a first-of-its-kind report released in 2018 by the Association of American Medical Colleges (AAMC) that explored the current state of medical education for medical students and physicians with disabilities. The report revealed common barriers to inclusion, as well as opportunities that will help enhance the academic medicine community's approach to students and physicians with disabilities.

The report lays out steps medical schools can take to lower the physical, cultural and administrative barriers that keep people with disabilities from seeking a career in medicine. It outlines, in checklist format, considerations for schools seeking to improve on their practices, based on research, best practices, case law, and the experiences of 47 current and former medical students with disabilities. It also highlights the missed opportunities for medical students to learn about disability through a peer and for patients to have doctors who understand their experience.

"I hope this report sparks critical conversations about disability inclusion in medical education and serves as a beacon for students with disabilities who aspire to be physicians but who had thought the barriers were too big to overcome," says Meeks, who conducted the research while at the UCSF School of Medicine. "I also hope it inspires educators to think broadly about how disability intersects with medicine, including how physicians care for the 1 in 5 patients who have disabilities."

Mark Peterson, Ph.D., M.S., associate professor of physical medicine and rehabilitation, is studying the natural history of pediatric-onset and acquired disabilities across the lifespan, including cerebral palsy, autism spectrum disorder, spina bifida, spinal cord injury, and more. His research efforts are specifically directed at understanding and identifying precision strategies to prevent metabolic dysregulation and secondary musculoskeletal pathology among children and adults with neuromuscular impairments, as well as a variety of frailty syndromes, and to better understand health disparities among individuals with disabilities from the context of access to preventive care and community wellness.

In addition to his research portfolio, Peterson recently joined the Special Olympics International as a global fitness adviser.

Leslie Pertz, MSW, an ASL interpreter with the Michigan Medicine Department of Family Medicine's Deaf Health Clinic, led a 2018 study regarding the mental health of Deaf individuals. The study included the design and piloting of an accessible, integrated mental health program for the Deaf population, scalable for other health centers interested in serving these individuals. The team addressed several identified barriers to care.

The researchers found that the addition of a language-concordant mental health clinician and telemental health appointments helped them better manage Deaf patients' mental health needs. The result was a significant improvement in the patients' depression and anxiety scores from their baseline to their last documented visit, and patient satisfaction overall was high. Telemental health appears to be a feasible tool to address some of the mental health gaps in the Deaf community, the researchers said.

David Burke, Ph.D., professor and interim chair of human genetics; David Lorch, Ph.D., program director of the Global Challenges for the Third Century Initiative on Deep Monitoring; and medical student Molly Fausone have developed stethoscopes and otoscopes that allow physicians and students with disabilities to be more effective in the clinic.

Since most imaging systems require physicians to have their eyes close to the patient's ear, mouth, or nose, physicians in wheelchairs with limited access are not able to see adequately. Many examination rooms aren't big enough for a wheelchair to go on both sides of a patient examination table, so this system has a long, flexible wire and a camera. The images are displayed on a nearby mobile device using immediate wireless transmission.

The option to use such medical devices may open up the opportunities of a medical career for many individuals who otherwise would not be able to meet its demands, the researchers say.

Denise G. Tate, Ph.D., professor and associate chair for research in the Department of Physical Medicine and Rehabilitation, directs a number of spinal cord injury (SCI) research projects in the department with a focus on neurogenic bladder and bowel and quality of life outcomes, as well as patient decision-making in relation to managing their bowel and bladder and related complications.

She works closely with the Ann Arbor Center for Independent Living, a community-based organization run by persons with disabilities that provides services for those with disabilities living in the Ann Arbor and surrounding areas.

Tate works collaborative with Tom Hoatlin, advocate and peer mentor, as well as colleagues from the Department of Urology, School of Public Health, and Institute for Social Research investigating issues of aging with disabilities, especially SCI. She currently leads two clinical trials in SCI for preventing urinary tract infections and enhancing self-management and self-efficacy using a behavioral intervention.

Chandramouli Krishnan, Ph.D., assistant professor of physical medicine and rehabilitation, of kinesiology, and of biomedical engineering, is the director of the Neuromuscular and Rehabilitation Robotics Laboratory (NeuRRo Lab). His research involves both mechanistic and interventional studies to facilitate the understanding of neuromuscular function and regulation in the context of movement control and neuromuscular plasticity. His work focuses on developing and testing low-cost robotic technologies and noninvasive brain stimulation techniques (e.g., TMS, tDCS) for the assessment and treatment of neurological and orthopedic conditions.

He was recently awarded a grant through the National Science Foundation's Disability & Rehab Engineering (DARE) Program to build a novel semi-passive robotic device for stroke rehabilitation. Such a device will help lower the cost of rehabilitation robots and enhance access to effective treatments for individuals with stroke and other neuromuscular conditions.

He is also running a clinical trial funded by the NIH to study the feasibility of improving quadricep function and gait biomechanics using a low-cost robotic brace developed in his lab in individuals with anterior cruciate ligament reconstruction.

Michael McKee, M.D., MPH, assistant professor of family medicine, has led research that found communication and language barriers isolate Deaf American Sign Language (ASL) users and place them at a high risk for inadequate health literacy, inappropriate health care utilization, and worse health outcomes.

His research also found that there are major gaps in whether Americans over age 55 get help for their hearing loss – gaps that vary greatly with age, race, education, and income. The cost of hearing aids is most to blame, the researchers found.

McKee leads two NIH-funded studies involving Deaf and hard of hearing individuals. The first is to study mechanisms of inadequate health literacy in the Deaf population and the second is to assess why Deaf and hard of hearing women have worse pregnancy and infant health outcomes compared to their hearing peers.

Elham Mahmoudi, Ph.D., assistant professor of family medicine, was the lead author of a study that found hearing aids may hold the potential to cut down on older adults' visits to the hospital or emergency room. The researchers analyzed data from 1,336 adults ages 65 to 85 who reported severe hearing loss; of those, only 45 percent use a hearing aid.

"Traditional Medicare doesn't cover hearing aids at all, Medicare Advantage plans may cover them but often ask members to share the cost at a high level, and only about half of states offer some Medicaid coverage for the lowest-income patients," Mahmoudi said.

James T. Eckner, M.D. (Residency 2007), associate professor of physical medicine and rehabilitation, was recently named research director of the new Michigan Concussion Center. Eckner has received funding from the NFL and NIH to examine assessment and outcomes associated with concussion among athletes.

The Michigan Concussion Center will use a multidisciplinary approach to answer fundamental questions about concussion prevention, identification, diagnosis, management and outcomes. The School of Kinesiology will have dedicated space for the center in its new building, which will be completed in fall 2020.

Justine Wu, M.D. (Residency 2003), assistant professor of family medicine, recently was awarded a National Institutes of Health K23 Mentored Patient-Oriented Research Career Development Award. Wu is a reproductive health researcher who has authored more than 30 publications about contraceptive care and reproductive health training, including a study that found the odds of female sterilization are higher among women with physical/sensory disabilities than those without disabilities.

Over the next five years, the grant will support her targeted research plan as she develops a web-based contraception decision aid for women with disabilities and other medical conditions and their primary care providers.

Jane Huggins, Ph.D., associate research scientist in the Department of Physical Medicine and Rehabilitation, and in Biomedical Engineering, is the director of the U-M Direct Brain Interface Laboratory.

The laboratory focuses on the development of EEG-based brain-computer interfaces (BCI) into practical clinical tools for use by people with physical impairments. Barriers to clinical use include signal processing challenges, selection of tasks for BCI operation, interactions between BCIs, and different conditions causing impairments, and technical support issues to troubleshoot in-home BCI use. Direct Brain Laboratory studies address many of these areas.

Seth Warschausky, Ph.D., professor of physical medicine and rehabilitation, is the director of the MICH-R Children's Neurodevelopmental Assessment Core, which provides consultation and outcomes assessments for pediatric clinical trials and developmental outcomes research. His research sponsored by the NIH, NIDILRR, Mildred E. Swanson, and Cerebral Palsy Alliance Research Foundation examines novel neuropsychological assessment methods for children and adolescents who have congenital neurodevelopmental conditions.

Collaborators include colleagues in the PM&R, Pediatrics, Surgery, and Psychiatry departments, as well as the Institute for Social Research and other universities.

Read his new study (co-authored with Daniel Whitney and Peterson), "Mental health disorders, participation, and bullying in children with cerebral palsy," at https://www.ncbi.nlm.nih.gov/pubmed/30710352.

Daniel G. Whitney, Ph.D., a postdoctoral research fellow in the Department of Physical Medicine and Rehabilitation, conducts research is centered around identifying opportunities to reduce the burden of health disparities among individuals with pediatric-onset disabilities.

Recently, he and his colleagues received a foundation grant to develop a new research methodology to identify biological mechanisms leading to suppressed muscle and bone development in children with cerebral palsy.

Read a recent research letter in JAMA Pediatrics, written by Whitney and Peterson, "U.S. National and State-Level Prevalence of Mental Health Disorders and Disparities of Mental Health Care Use in Children," at https://jamanetwork.com/journals/jamapediatrics/article-abstract/2724377.

Anna Kratz, Ph.D., associate professor of physical medicine and rehabilitation, is a clinical psychologist whose research focuses on improving our understanding of the impact that chronic symptoms, such as pain and fatigue, have on physical, social, and emotional functioning. She works across a number of clinical conditions, including multiple sclerosis, spinal cord injury, and fibromyalgia.

Her most recent grants have moved beyond efforts to understand symptoms to work toward developing and testing symptom management interventions. In 2018, she and her collaborator, Tiffany Braley, M.D., M.S. (Residency 2008), associate professor of neurology, received a $3.6 million award from the Patient-Centered Outcomes Research Institute to conduct a comparative effectiveness trial of medication and behavioral treatments for fatigue in multiple sclerosis.

Noelle Carlozzi, Ph.D., associate professor in the Department of Physical Medicine and Rehabilitation and director of the Center for Clinical Outcomes Development and Application (CODA), has a research portfolio that includes two large-scale, multi-site studies funded by the NIH.

She is an expert in health-related quality of life computer adaptive test development and in outcomes measurement validation for newly developed measurement systems (the Patient Reported Outcomes Measurement Information System, or PROMIS), the Neuro-QOL measurement system, and the NIH Toolbox.

Read more about research and developments at the Department of Physical Medicine and Rehabilitation here. Read more about research and developments at the Department of Family Medicine here.

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