Standing Up for Those Who Can't

In remote areas of the world, far from our everyday lives, chronic and debilitating diseases are creating a downward spiral of disability and economic defeat among the "bottom billion" of the world's population.

Two teams of researchers from the Department of Rehabilitation Science and Technology (RST) are fighting these problems with technology and expertise.

"By 2020, 80 percent of the global disease burden will be borne by low- and middle-income countries. The culprits are chronic diseases such as diabetes, heart disease, and cancer in combination with neglected tropical diseases such as elephantiasis, leprosy, and Buruli ulcer," explains Assistant Professor Mary Jo Geyer. "Affected persons suffer from painful wounds, swelling, amputations, and premature death.

"In countries with limited resources, the loss of a foot or lower limb is a common path to disability. Fortunately, many of these limbs can be saved with basic foot care and appropriate footwear."

Geyer is a licensed physical therapist with board certification in wound care, lymphedema therapy, and pedorthics. As such, she has spent much of her life helping affected persons prevent or manage complications associated with chronic diseases.

In 2010, she convened a meeting of international stakeholders in leprosy, elephantiasis, Buruli ulcer, and diabetes to develop a more uniform approach to training health workers in essential lower limb care. The Legs to Stand On™ (LTSO) initiative emerged from this meeting.

The long-term goal of the initiative is to improve lower limb care and prevent secondary complications in settings with limited resources worldwide. "One aim is to translate best practices into practical, technical tools for use in training health workers at the community level, where costs are low and interventions are strikingly similar across diseases," says Geyer.

Another critical aim is to bridge gaps between the community and higher levels of the health care system.

The LTSO model integrates supportive strategies to enhance the sustainability of limb care programs. Strategies may include community development projects such as clean water initiatives, leadership training for community leaders, youth soccer programs to develop a new generation of leaders, business training to improve access to health and medical supplies through entrepreneurial activities, and/or the application of information and communication technologies.

Geyer points out, "Our role is to provide technical support, to bring more uniformity to training at the community level, and to help partner non-government organizations with real 'boots on the ground' to create sustainable programs that can be adapted to different circumstances in different countries."

The LTSO lower limb care training modules are scheduled for publication in the spring of 2012. Demonstration projects are planned to begin this year to validate the modules in selected West African countries.

These projects will be supported by Rotary International and other foundations, and conducted in cooperation with Government Health Services, academic partners (Howard University School of Business), and Non-Governmental Development Organizations (NGDOs), including Handicap International France, American Leprosy Missions, and Netherlands Leprosy Relief.

Students in Pitt's new Master of Science in Prosthetics and Orthotics program are also involved in making and bench-testing various styles of low-cost footwear for use in establishing limb care programs.

Geyer's husband, Dr. Ray Burdett, associate professor and director of the Master of Science in Prosthetics and Orthotics (P&O) program, and Dennis Janisse, RST adjunct faculty and CEO of National Pedorthic Services, have been working with Geyer since 2008, teaching and promoting pedorthic training in low-resource settings.

Together they hope to raise enough funds to sponsor service-learning projects for SHRS students to establish LTSO pedorthic and P&O services in underserved areas of the world.

From West Africa to Central Mexico

Geyer's colleague in the Department of RST, Assistant Professor Jonathan Pearlman, agrees wholeheartedly that community involvement is the linchpin to success.

Through the 4R Model for Lifelong Mobility project, Pearlman and three graduate students, Maria Luisa Toro-Hernandez, Yasmin Garcia Mendez, and Manoela Ojeda, as well as a team from Mercyhurst University, are working with community members and wheelchair users in remote areas of central Mexico.

Pearlman became involved with this project through the Benter Foundation, which also provides funding to Legs to Stand On.

"They had funded a supply of wheelchairs for children with disabilities through the American Wheelchair Mission (AWM)," states Pearlman. "Because many wheelchairs fall into disrepair and become unused or discarded, the Foundation wanted to support their donations with a broader, more sustainable vision."

The four R's–Recycle, Reuse, Repair, and Retrofit–became the basis for a community model to increase the lifecycle of donated wheelchairs.

Through an active partnership with Carnegie Mellon University, AWM, and the Teletón Children's Rehabilitation Centers (CRITs) in Mexico, Pearlman's team quickly began to gather data in the Mexican city of Irapuato.

They estimated how many unused wheelchairs were present in the area, cataloged the most common failures in unused chairs, and surveyed wheelchair users and their families to better understand the mobility needs of the users and why the wheelchairs were unused. They also surveyed the Teletón staff regarding the feasibility of the 4R model.

Then they set out to establish a "parts depot" and repair shop at a CRIT clinic that will serve as the hub for a community-based wheelchair buyback program.

"When we invited caregivers to participate, they were very excited about the maintenance program," Pearlman notes. "In the past, there were no service centers–there was no way to get the wheelchairs repaired. Now, we're not only offering the wheelchair users and their caregivers the opportunity for wheelchair maintenance, we're setting up a business model that can become a source of income for the clinics."

Ojeda, who had volunteered for several years at the CRIT in Mexico City, thought it might be difficult for the Irapuato CRIT team to fully accept the 4R model because it represented significant changes to the way things were done. "There was no resistance in adopting the model," exclaims Ojeda. "In fact, they were happy to participate and made valuable contributions to the project."

This year, the pilot clinic dedicated 2,000 square feet of space to the program, and a wheelchair maintenance training program is currently underway. Technicians are learning how to assess wheelchairs for individual users and determine what parts are salvageable and how to repair them.

Pearlman's team will continue to collect and catalog data from the first phase of the trial and return to the site to revise and refine the 4R model, in collaboration with Dr. David Dausey, a global health expert at Mercyhurst University.

Doctoral student and Colombia native, Toro-Hernandez was eager to participate in the 4R model and commends Pearlman for challenging her to think about other ways to use the information they have gathered.

"Mexico is similar to Colombia in terms of needs and resources in the field of assistive technology," observes Toro-Hernandez. "This is a great opportunity for me to work on projects that have similar goals and context to the ones I will have to face in Colombia when I return upon my degree completion."

Garcia Mendez, who will return to her native Mexico after she receives her Masters in Rehabilitation Science and Technology this year, continues, "It was important for me to see how different things are in Mexico, and to get a more realistic view of the situation of people with disabilities in my own country."

Both Geyer and Pearlman see their work as an extension of the research conducted by Dr. Rory Cooper and other members of their department. In Geyer's words, "It's all about the continuum of maintaining mobility."

Gifts to support these international projects can be made through the "Giving to SHRS" link under the Alumni tab on the SHRS Web site. Also, visit SHRS's Pitt Giving page.