Harnessing the superpower of the environment

Susy Stark, PhD, OTR/L, FAOTA, says her mission is “to develop evidence-based interventions designed to improve aging in place safely and promote the implementation of those interventions by occupational therapists (OTs).”

Translation — she wants to make the world a better place. Stark, an associate professor of occupational therapy, neurology and of social work, is director of the Participation, Environment and Performance Laboratory in the Program in Occupational Therapy at Washington University School of Medicine. An internationally recognized clinician and translational scientist, Stark has spent almost her entire career trying to harness what she calls a “superpower” in helping older adults live more independently in their homes and remain active in their communities.

“It’s so obvious once you start thinking this way,” she says. “It’s the environment. As I worked with patients and conducted research in the community, I could clearly see that if we could fix or modify aspects of a person’s environment, they could do what they wanted to do and remain as independent and engaged as possible. For them, a modified environment was their superpower for them to keep living how they wanted.”

Early in her career, Stark said, it was an unusual concept to focus on the environment and its impact on functional limitations and disabilities. “At first, we couldn’t imagine changing the environment to support performance,” she recalls. “But then came the Americans with Disabilities Act, the civil rights law passed in 1990 that prohibited discrimination against people with disabilities. While that was exciting, buildings still were being constructed with steps, which impacted accessibility. It just didn’t make sense. I kept asking myself, ‘Why wasn’t everyone focused on the environment?’”

Stark said that question ultimately pushed her to pursue a doctorate in environment and behavior science from the University of Missouri. “My dissertation was on the environmental barriers and support in homes of people with disabilities, which made me realize that through informed practice, we could track outcomes and change practices worldwide, thereby enhancing the quality of life for many, many people.”

Successful aging in place

Stark initially earned her master’s degree from the Program in Occupational Therapy in 1989. She served as an OT at Washington University (WashU), working with a wide variety of patients, including homeless individuals, mentally ill women, older adults after hip fracture, and kids with behavioral disorders. After leaving to obtain her doctorate, Stark returned to WashU to work with David Gray, PhD, a psychologist known internationally for his efforts to improve the lives of people with disabilities. Stark worked with Gray, who died in 2015, to develop a series of survey instruments designed to assess physical environmental features and identify barriers that impact the participation of individuals with mobility impairments, low vision or hearing loss.

“It was eye-opening,” says Stark, who subsequently focused her own research on older adults, wondering if home modifications could positively influence functional ability and independence for seniors at risk for falling. The research was significant because in the U.S. alone, one in three older adults fall every year, with half of those falls taking place in the home.

Her research was among the first in the U.S. to empirically show that, yes, home modifications can significantly improve function, and subsequently, independence, among older adults with chronic conditions. Pushing those results directly into the community, Stark collaborated with the Jewish Federation of St. Louis to establish the St. Louis Naturally Occurring Retirement Community (NORC) in 2004. The senior living community enables adults to more easily age in place and engage in community activities with the use of home modifications. NORC now has been a model community in St. Louis for more than 13 years.

 

The Participation, Environment and Performance Laboratory

In 2005, Stark established her Participation, Environment and Performance Laboratory (PEPL) with the sustaining support of the Program in Occupational Therapy. “It was difficult to start the lab, but the real challenge has been to sustain it with funding for the long-term,” she says. “That’s because, traditionally in occupational therapy, we don’t ask basic research questions; instead, we ask a lot of applied questions.”

Initial funding came from a Career Development Grant from the Centers for Disease Control and Prevention and a pilot grant from the Barnes Hospital Foundation. In working with WashU mentors Ross Brownson, PhD, a leading expert in applied epidemiology and evidence-based public health, and neurologist John Morris, MD, director of the Section of Memory and Aging in the Department of Neurology, Stark went after a large grant from the National Institutes of Health (NIH).

“There were several OTs who received funding as basic scientists, but there were no OTs doing what I did, which was to look at the impact of interventions on functional living. I didn’t really believe that the NIH could care about someone getting on and off a toilet,” she says with a short laugh, “but through my mentors’ and my work in multidisciplinary teams, I came to think of myself not as an OT working with other OTs, but instead, as an occupational therapist who should have a voice at the table.”

She submitted her first R01 application for a study on how home modifications can reduce the risk of falling among older adults living independently. She says simply, “It didn’t get any traction at the NIH. Rather than give up, however, I took a year to talk with my mentors and re-write the application. I then submitted it to the U.S. Department of Housing and Urban Development.”

She secured more than $724,000 in funding. As she gathered more evidence, she submitted more grant applications, securing an NIH R03 grant in 2014 for a pilot interventional study titled COMPASS: A Novel Transition Program to Reduce Disability after Stroke.

“We wanted to know if a pre-discharge visit to evaluate the home and then a series of home visits to address barriers in the home and community could help people re-engage in their valued activities such as going to church or a attending their daughter’s basketball game,” she says.

The pilot study looked at participation outcomes in 15 individuals. “It was so impactful,” Stark says. With empirical preliminary data in hand, she applied for a larger grant and, in 2017, was awarded a five-year, $1.35 million NIH R01 grant to expand her COMPASS study to include a randomized trial of 150 individuals. All totaled, Stark’s lab now has five grants, including a five-year, $2.5 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) that is exploring an emerging occupational therapy issue—accelerated aging among middle-aged adults.

“There is an entire group of adults in the 55–64 age range who have lived with long-term disability from conditions such as cerebral palsy or spinal cord injury, and they are experiencing aging a decade or more ahead of schedule,” Stark explains. “We found out about this issue by working with community agencies. We need to better understand the issues and test home modifications to see if any interventions work for this age group, which typically isn’t accessing the health-care system in this earlier age range.”

As she continues to advance her own research and find innovative funding options, Stark has taken yet another step to increase those opportunities for other OTs. She now is a regular member of the NIH’s Small Business: Psycho/Neuropathology, Life Span Development, and STEM Education Special Emphasis Panel actively reviewing grant applications. “The way it works is that you are judged by your peers in the grant application process, but there were no OT peers at the table to judge my work,” she says. “I’m the only OT in the study section, and, so far, I’ve seen only a few occupational therapy grants come through.”

She says, “We all need to be able to clearly articulate a problem that our science is addressing and to clearly detail how to measure it. In this era of reduced funding, OTs need to set clear, measureable objectives. I believe the NIH is now shifting in their appreciation for public health issues such as falls and independence in the home because it makes economic sense to do that. We need to take advantage of this shift.”