National Advisory Board on Medical Rehabilitation Research (NABMRR)
National Center for Medical Rehabilitation Research (NCMRR)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Virtual Meeting Format
Edelle C. Field-Fote
Stephanie C. DeLuca
Robyn Watson Ellerbe
Arthur W. English
Thubi H.A. Kolobe
Albert C. Lo
Craig M. McDonald
David J. Reinkensmeyer
Michael Wade Shrader
Elizabeth R. Skidmore
Ex-Officio Members Present:
Daofen Chen, NINDS
Theresa Cruz, NICHD
Mary F. Lovley, OSERS
Ralph Nitkin, NICHD
Christopher Steele, DoD
Ex-Officio Members Absent:
Jerome L. Fleg, NHLBI
Lyndon Joseph, NIA
NICHD Staff and Visitors
Welcome, Introduction of New Members, and Approval of Minutes
Ralph Nitkin, Ph.D., opened the virtual meeting at 10:00 a.m. and welcomed the participants, as well as those watching the live or recorded webcast. Edelle C. Field-Fote, P.T., Ph.D., Board chair, called the roll of Board members and ex officio members. She noted that this was the first NABMRR meeting for the three new members: Cheri A. Blauweb, M.D.; Flora Hammond, M.D., FAAPMR, FACRM; and Michael Wade Shrader, M.D.
Dr. Nitkin acknowledged the passing of Margaret (Peg) Nosek, Ph.D., noting that she was tireless worker, advocate, researcher, and role model for women with disabilities. For a large part of the twentieth century, rehabilitation research was driven by support of our returning veterans and largely focused on men’s health issues. Dr. Nosek nearly single-handedly rebalanced the focus to also include women’s health issues – and extended the discussion from clinical issues to include psychosocial topics and community support. “We’re not victims of our disabilities,” she said in one article. “We’re victims of how society responds to our disabilities.” She was one of the major drivers for the Americans with Disabilities Act and an early supporter and collaborator for the NCMRR – specially within the context of women with disabilities. She was a faculty member at Baylor for 36 years, had grants from NIH and other federal funding agencies, and published nearly 100 research articles and 25 reviews. Dr. Nosek was a role model for a generation and her memory will be a continuing inspiration.
Dr. Field-Fote announced that NABMRR meetings were planned for May 3–4, 2021; December 6–7, 2021; and May 2–3, 2022. A decision will most likely be made in March 2021 about whether the May 2021 meeting will be held online or in-person.
Dr. Field-Fote noted that the minutes from the August 2020 meeting are available on the Board’s website. The minutes were approved by voice acclamation with no abstentions.
Updates from the NICHD Director
Diana W. Bianchi, M.D., Director, NICHD
Dr. Bianchi updated the Board on the institute’s budget, the anniversaries of some key events, and institute research activities.
The federal government is operating under a continuing resolution through December 11, 2020. Congress is negotiating a stopgap budget to keep government agencies running, including the Department of Health and Human Services. Dr. Bianchi said that NICHD had been spending conservatively because of the uncertain budget. Once a budget is in place, the institute could likely support a broader payline to fund more research.
Dr. Bianchi highlighted the 30th anniversaries of NCMRR and the Americans with Disabilities Act (ADA). The ADA increased access for people with disabilities to many aspects of community life, including employment. The ADA also resulted in Section 508 guidelines, which improved the accessibility of information (primarily for people with low vision), the development of assistive technologies, and the implementation of design standards to make facilities, products, and services accessible to the widest range of people possible. NCMRR was established via an amendment to the Public Health Service Act. Mary Lovley noted that President Woodrow Wilson signed the National Civilian Vocational Rehabilitation Act into law 100 years ago.
NICHD’s Research on CoronaVIrus Disease 2019 (COVID-19)
COVID-19 has disproportionately affected people who have intellectual, developmental, and physical disabilities—particularly those who live in congregate housing. Dr. Bianchi highlighted a recent article in the New York Times that noted that people with developmental disabilities are three times more likely to die of COVID-19 than the general population.
NIH has several research programs on COVID-19 funded through the Office of the Director. NICHD did not receive specific funding for COVID-19 projects via the Coronavirus Aid, Relief, and Economic Security (CARES) Act or other budgetary measures. But by working collaboratively across NIH, the institute has launched projects that serve its populations.
NIH’s Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) initiative aims to assess and expand rapid testing for COVID-19 in underserved and vulnerable communities. NIH’s investment in RADx-UP amounts to more than $283 million at 55 institutions across 33 states and territories and the Cherokee Nation. The initiative’s goal is to understand disparities in morbidity and mortality and look for ways to reduce those disparities. Washington University at St. Louis, which is one of NICHD’s Intellectual and Developmental Disabilities Research Centers, received RADx-UP funding for a trial that will offer 50,000 COVID-19 saliva tests to students, teachers, and staff in six special education schools in St. Louis. The study is exploring national perspectives of parents and school staff on the effects of COVID-19 and the importance of SARS-CoV-2 testing.
The NIH-wide INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE) initiative is supporting a project exploring the effects of COVID-19 on individuals with Down syndrome. Researchers in the United Kingdom found that adults with Down syndrome have a fourfold higher risk for COVID-19-related hospitalization and a tenfold higher risk of death (PMCID: 7592804). But Down syndrome is not currently identified as a risk factor by the Centers for Disease Control and Prevention.
Dr. Bianchi reported that very few applications have been received for grants to support studies of COVID-19 on rehabilitation services, the long-term effects of COVID-19 on people with disabilities, and the rehabilitation needs of COVID-19 survivors who are past the acute phase of the disease. Dr. Bianchi asked the Board to spread the word to encourage more researchers to apply for funding support to test hypotheses related to the pandemic and rehabilitation.
Dr. Bianchi said that NICHD is very concerned about the pandemic’s impact on researchers. On the NIH campus, the safety of researchers, patients, and study participants is paramount. NIH also took steps to create policies and guidance to help extramural researchers. For example, recognizing that the pandemic has adversely affected the ability of many applicants to generate preliminary data in time for their grant applications, NIH issued a notice of special exception (NOT-OD-20-123) to allow the submission of preliminary data after an application is submitted. Guidance for researchers preparing applications during the pandemic is available (NOT-OD-21-026).
Dr. Bianchi said that NIH has made certain accommodations for loss of research time. NIH will consider granting extensions for early stage investigator eligibility to account for COVID-19 disruptions. NIH is flexible regarding the time constraints for fellowship, career development, and training awards. Dr. Bianchi recommended that grantees and applicants discuss their needs with their funding institute or center. There may be flexibility for delayed report submission, second or third no-cost extensions, and carryover requests.
Dr. Bianchi highlighted new training modules, such as the Clinician-Scientist Investigator curriculum, which includes an introduction to NIH and explanations of various grant mechanisms. Department chairs may nominate promising postdoctoral fellows and junior faculty. Trainees may also benefit from a childcare stipend for recipients of the NIH Ruth L. Kirschstein National Research Service Award. The stipend is $2,500 per parent per year.
NICHD Strategic Plan Implementation
The NICHD Strategic Plan (PDF 2.3 MB) rolled out a year ago. Since then, NICHD staff have been developing activities to support progress toward each objective while remaining flexible enough to respond to public health crises, such as the COVID-19 pandemic, and shifts in national priorities. Dr. Bianchi identified several new and ongoing activities across some themes in the strategic plan. She also showcased a selection of 2019-2020 science advances organized by the strategic themes relevant to the NCMRR, including:
- Identification of eight rare and damaging genetic variants associated with spina bifida
- Discovery of a genetic mutation that enhances cognitive flexibility in mice
- Finding that adverse pregnancy outcomes are more common among women who are deaf or hard of hearing
- Reports that benefits of fetal surgery to repair spina bifida persist through school age
- Finding that false-positive results in newborn screening can be reduced with machine learning
Dr. Bianchi said that NICHD will continue refining implementation plans for the strategic plan. Staff are also developing metrics to track progress toward strategic objectives. Progress will be documented in a publicly available report.
Dr. Bianchi described several recent workshops relevant to NCMRR’s mission. She also noted that workshop attendance has grown exponentially, thanks to increased use of technology, allowing people whose physical disabilities make travel difficult to have access to the same information as others. Video recordings of past many workshops are available online.
A 2-day virtual workshop, Navigating Pediatric to Adult Health Care: Lost in Transition, focused on the needs of youth with chronic health conditions or disabilities as they make the transition from a pediatric medical home to a new environment, where they are treated as adults with a new care team. An analysis of the NIH portfolio on transition research identified gaps, such as a lack of measures to indicate successful transition.
Another 2-day virtual workshop, NIH Blueprint for Neuroscience Research: Addressing Neuroimaging Challenges Across Populations and Settings, aimed to identify ways to maximize inclusion in neuroimaging studies. People who have trouble staying still, pregnant women, and patients with indwelling devices are mostly excluded from imaging studies.
Dr. Bianchi reiterated the need for more research to elucidate the comprehensive effects of the pandemic on rehabilitation services. She also emphasized NIH’s efforts to be supportive of researchers and trainees throughout the pandemic.
Participants submitted the following comments via the meeting platform’s chat feature:
- One Board member commented that potential grant applicants are hampered by a lack of data on COVID-19 and disabilities. Dr. Bianchi acknowledged that some applications are more registry-based and descriptive in nature, providing information that is somewhat exploratory, but that could be a basis for testing future hypotheses mainly in basic science or animal model work. For clinical research, there are opportunities to learn from clinical observations about COVID-19’s effects on disabilities. She added that a registry study nested within a larger study being conducted by the NICHD’s Maternal-Fetal Medicine Units Network is looking at pregnancy and newborn outcomes, based on the hypothesis that rates of complications will be higher this year than prior years, due to COVID-19. Most likely, there will be many downstream effects as women skip medical appointments and clinics operate at reduced capacity.
- Another Board member remarked on the major problem of disparities arising from lack of access to therapy services that are normally provided in schools and communities. It appears that no one is looking at the environment that is needed to use provided computers and tablets. For access, people need not only a device, but also fast Internet service. The Board member asked whether any groups are investigating ways to increase access for groups in need. Dr. Bianchi was not aware of such efforts, but she noted that the question is closely related to the issue of educational disparity that arises from a lack of Internet access. Dr. Bianchi spoke of the need for evidence to inform recommendations about providing services to disadvantaged groups and to answer questions about how a lack of access to services or Internet is affecting people. She is concerned that some disadvantaged children are likely to fall even further behind because of the pandemic.
NCMRR Director’s Report
Theresa Cruz, Ph.D., Director, NCMRR
Dr. Cruz updated the Board on NCMRR’s staff changes, a recent rehabilitation conference, NCMRR’s research plan, and the center’s activities over the past few months.
NCMRR Staff Updates
Toyin Ajisafe, Ph.D., joined NCMRR as a health scientist administrator. He will manage a portfolio focused on movement biomechanics for people with disabilities, health disparities, and pediatric rehabilitation populations. His research focus includes locomotor competence in children with and without disabilities, physical activity surveillance and development of wearable devices, development of games for locomotor training, health-related physical fitness assessment, and cardiometabolic risk prediction using machine learning techniques.
Dr. Cruz announced that the Medical Rehabilitation Coordinating Committee (MRCC) has a new co-chair: Lyndon Joseph, Ph.D., from the National Institute on Aging (NIA).
Rehabilitation Research 2020: Envisioning a Functional Future
Dr. Cruz reported on the success of the 2-day rehabilitation conference , which was more than a year in planning. The conference featured 25 speakers, 90 posters viewed by more than 800 people, and four exhibit booths, which logged more than 300 visitors. More than 1,800 people registered; 1,200 attended live. Because Natcher Auditorium, where the conference is usually held, holds only 500 people, convening the conference remotely offered an opportunity for many more people to participate.
The 79 responses to an evaluation survey provided insights into participants’ reactions. The overwhelming majority were positive. The keynote address by Jenny Lay-Flurrie, M.B.A., chief accessibility officer at Microsoft, received the highest ranking. Dr. Cruz presented a sample of some of the free-text comments from survey respondents:
- “The platform used to host the conference made access to the virtual meeting very easy.”
- “The excellent information made the conference professional and appealing to attend.”
- “Great lineup of speakers.”
- “I missed the personal interactions that are possible at face-to-face meetings.”
- Several respondents noted that some difficulties occurred when sessions overlapped or were too closely scheduled to allow transitions.
- One person was interested in seeing much more representation of studies about health promotion interventions and how people live in the community.
Update to the NIH Research Plan on Rehabilitation
NIH is undertaking an update to its 2016 Research Plan on Rehabilitation . A Request for Information (RFI) was released in the fall of 2019, but no responses were received. An advisory committee convened, and subgroup meetings were held throughout the spring and summer of 2020. A new RFI (NOT-HD-20-033) was released on September 18, 2020, to gather broad public input on the draft research objectives for the revised research plan. NIH received 26 responses—16 via email and 10 from the Ideascale crowdsourcing platform. Most responses were from individuals. Some responses underscored the need for technology innovation to be more prominent. Some people commented on the language used in the strategic plan (e.g., interdisciplinary vs. multidisciplinary, care partner vs. caregiver), and others remarked on the adult focus of some objectives. The NIH MRCC will take these comments under advisement and submit the final plan to Congress sometime in 2021.
The NIH Office of Disease Prevention, along with other federal partners, convened the Pathways to Prevention: Can Physical Activity Improve the Health of Wheelchair Users? virtual workshop in early December 2020 to assess the available scientific evidence on the benefits of physical activity interventions for health and wellness among wheeled mobility device users. The information discussed will be used to increase the scope of the Physical Activity Guidelines. The Agency for Healthcare Research and Quality’s Evidence-Based Practice Center is conducting the systematic review for this effort. The draft systematic evidence review is open for comments; the deadline is January 8, 2021.
Update on Funding Opportunity Announcements (FOAs)
Dr. Cruz updated the Board on FOAs for rehabilitation research. Early Career Research (R03 Clinical Trial Optional) applications (PAR-20-042) are due in March 2021 and March 2022. Dr. Cruz noted a change to the eligibility of Principal Investigators (PIs) for this announcement. Regarding the expiration of some NICHD-specific FOAs, Dr. Cruz reported that several notices were issued recently. The R01 (Clinical Trial Required) will be accepted for February due dates. Updated information will be provided in a forthcoming newsletter.
A Notice of Special Interest—Research on Rehabilitation Needs Associated with the COVID-19 Pandemic (NOT-HD-20-031) was released on September 29, 2020, to encourage applications in three areas: rehabilitation needs of survivors of COVID-19; impact of disruptions to rehabilitation services and associated mitigation actions; and social, behavioral, economic, and impact of the pandemic and associated mitigation actions on the health of people with physical disabilities.
The Interagency Rehabilitation and Disability (IRAD) Research Portfolio website, not yet live, will be a government-side resource for information on funding for rehabilitation and disability research.
NCMRR and the National Institute on Neurological Disorders and Stroke (NINDS) are collaborating to develop common data elements (CDEs) on neurorehabilitation. The project is twice the size of any previous endeavor, involving more than 140 working group members. It will be the first cross-disease effort, covering 10 domains. The idea is to aggregate CDEs in one place and identify gaps in core elements and highly recommended elements from existing CDEs.
A federal interagency group is working to standardize CDEs for limb-loss research. The group will request public input and hold a webinar sometime during the winter of 2021 to garner reactions to the initial set of CDEs.
NCMRR staff continue to engage in outreach and participate in meetings, including the American Speech-Language-Hearing Association’s Lessons for Success Program. Several workshops are in planning stages. One scheduled for February 2021 aims to garner broad community perspectives on advancing research on limb regeneration, using emerging technologies to activate the body’s own growth processes. Dr. Cruz asked the Board to notify her about any other meetings that would be of interest to NCMRR.
Board members noted that the COVID-19 pandemic has affected clinical research. One challenge with developing robust applications with regard to COVID-19 effects on individuals with disabilities is the need to provide “strong, hypothesis-driven preliminary data.” Data relevant to such applications may be more exploratory by nature. Given the uniqueness of the COVID-19 situation, how will grant submissions be reviewed vis-à-vis the requirement for preliminary data? Dr. Cruz said that NIH understands that the pandemic has had an outsized effect on clinical research, so the agency is allowing some flexibility in the grant application process. Preliminary data may be submitted after an application is submitted, although some provisos apply. Applicants are encouraged to not discuss contingency plans during the pandemic, and reviewers are instructed not to consider contingencies. Guidance is available.
Another Board member noted that the pivot to virtual workshops has helped reduce the need for travel and lowered the cost of participation, opening up event participation to a wider audience. The Board member also asked whether any entities are looking into access to virtual workshops’ information for disadvantaged and low-income families.
Another Board member referred to a public comment about the NCMRR research plan objectives being focused mainly on adults, noting that the language could be made more inclusive.
The following comments were made in the chat from Board members:
- The population with developmental disabilities has been disproportionately affected by virtual instruction. Some schools have accommodated students with disabilities by providing face-to-face instruction (with social distancing), but others have not.
- Significant disability-based disparities have been observed in virtual care and telehealth. Interestingly, telehealth has improved access for people with certain types of disabilities (e.g., mobility disability) and impeded access for people with others (e.g., communication or intellectual disabilities).
- There are differences between face-to-face and virtual formats for education and therapy—maybe even neuroscience-based differences—and perhaps across ages. However, it is difficult to obtain data regarding these differences.
NIH Research Plan on Rehabilitation: The Way Ahead
Jennifer Jackson, Ph.D., Health Program Specialist, NCMRR, NICHD; and Trans-NIH MRCC
Dr. Jackson’s presentation covered the overarching strategy, coding process, and preliminary findings of a 2019 rehabilitation portfolio analysis by the trans-NIH MRCC. She also addressed the interdisciplinary collaborations underlying rehabilitation research projects, as well as the clinical impact of these projects.
The portfolio analysis aimed to assess the impact of the 2016 NIH Research Plan on Rehabilitation (PDF 443 KB) on trends in extramural rehabilitation research across NIH institutes’ portfolios. The committee searched NIH Research Portfolio Online Report Tool Expenditures and Results (RePORTer) for extramural projects in the Rehabilitation Research, Condition, and Disease Category (RCDC). Data from 2015 (before the research plan was published) were used as a baseline for comparison for succeeding years through 2019. Each identified project was categorized along two tiers. Tier I was based on a keyword approach for the six themes of the Research Plan on Rehabilitation:
- A: Rehabilitation Across the Lifespan
- B: Community and Family
- C: Technology Use and Development (including telehealth)
- D: Research Design and Methodology (clinical research)
- E: Translational Science (including animal research)
- F: Building Research Capacity and Infrastructure
Tier II represented the phase of research for each project: basic, disease-related basic, applied (translational or clinical), infrastructure, and uncategorized.
Dr. Jackson explained some key findings of the analysis, although she noted that the data are still preliminary until all reviews are complete. She presented data showing an increase in NIH’s extramural rehabilitation portfolio over the period from 2015 through 2019. Funding increased from $500 million in 2015 to about $725 million in 2019—an increase of about 45 percent. The number of projects rose from about 1,200 to about 1,800 during the same period.
In 2019, 1,725 grants comprised NIH’s entire portfolio dedicated to rehabilitation research. NINDS and the National Institute on Deafness and Other Communication Disorders supported the most rehabilitation research projects and provided the highest levels of funding, with NICHD and NIA following close behind. Most projects fell into the RCDCs of clinical research, neurosciences, or behavioral and social sciences.
Dr. Jackson also presented a topic analysis of 2019 RCDC terms that showed some connections and overlap of topics, as well as another map showing clustering of research projects by topic. Some overlap between topics was apparent, such as the overlap of spinal cord injuries (SCIs) with neural and vascular plasticity and regeneration, but, for the most part, the topics clustered together within their overall programs. The most significant topic across the institutes’ portfolios was sound perception and processing (with about 117 projects), and the second largest was career development (about 115 projects).
In 2019, 523 supported projects were clinical trials, and 951 were other types of research. Four projects were supported under a new funding mechanism: clinical trials research experience. A total of 247 projects were uncategorized. Clinical trial grants received $276 million in 2019 (38 percent of total rehabilitation funding). Nonclinical studies received nearly $366 million. Half of clinical trials were supported through the R01 funding mechanism.
Dr. Jackson explained that most rehabilitation research projects fell under Theme D, which includes clinical trials. Tier II analysis showed that most NIH-supported rehabilitation research (46 percent) was considered applied clinical research. Dr. Jackson pointed out that Theme B (Family and Community) had fewer rehabilitation research projects than the other themes. In 2019, 36 projects yielded 140 patents, mainly through R01 and P grants.
Clinical Impact and Interdisciplinary Collaborations of the 2019 Portfolio
The committee assessed the clinical impact of NIH-supported rehabilitation research by analyzing citations in the literature. Of the 45,000 or so citations identified in iCite, 31 percent have been cited in a clinical trial or guideline. The median relative citation ratio (RCR) of these papers was 1.07, and the mean RCR was 2.06.
An analysis of biosketches from NIH’s 2019 portfolio revealed many interdisciplinary collaborations: 1,522 grant applications included multiple biosketches. Focusing on the 340 NCMRR grants with multiple biosketches, Dr. Jackson said that the data give an idea of the types of professionals who work together on NCMRR grants and reveal opportunities for collaborations. She pointed out that about one-third of the 2019 applications for NCMRR grants identified physician-specialists as PIs collaborating with other physicians; the large majority of physician-led projects also identified collaborations with other professions. Only one 2019 application had a nurse as a PI.
Dr. Jackson identified some trends in primary themes of NIH-funded rehabilitation research projects. From 2015 to 2019, there were notable increases in Theme B and Theme D grants, both in terms of numbers and total funding. The most striking increases were in the Tier II categories of disease-related basic and applied clinical research. Over the same period, the number of clinical trials and their funding increased sharply; non-clinical research also increased, but to a lesser extent. Recent increases in applied translational research occurred in 2019, perhaps as a result of the NIH Helping to End Addiction Long-term℠ (HEAL) initiative.
Dr. Jackson described recent efforts to bolster activity for relevant themes in the Research Plan on Rehabilitation:
- Theme A: Rehabilitation Across the Lifespan
- Theme B: Community and Family
- The National Heart, Lung, and Blood Institute issued an RFA (RFA-HL-18-019) soliciting applications for “Increasing Use of Cardiovascular and Pulmonary Rehabilitation in Traditional and Community Settings.”
- The National Institute of Nursing Research (NINR) published a program announcement (PA) for “Addressing Caregiver Symptoms through Technological Tools” (PA-19-023) following the 2017 NINR-led summit, “Science of Caregiving: Bringing Voices Together.”
- Theme C: Technology Use and Development
- NCMRR and the National Science Foundation hosted the Can Technology Make a Difference in Pediatric Rehabilitation? workshop.
- NCMRR, NINDS, the U.S. Department of Veterans Affairs, the U.S. Department of Defense (DoD), and the National Institute on Disability, Independent Living, and Rehabilitation Research hosted Optimizing the Investment in Medical Devices for Rehabilitation workshop.
- Theme D: Research Design and Methodology
- NCMRR hosted The Future of Medical Rehabilitation Clinical Trials (PDF 206 KB).
- Multiple institutes and centers and the NIH Office of the Director published a PA (PAR-19-274) soliciting R01 applications for “Dissemination and Implementation Research in Health” with specific language for rehabilitation research.
- NCMRR issued an RFA (RFA-HD-16-001) to support “Secondary Analysis of Existing Databases in Traumatic Brain Injury to Explore Outcomes Relevant to Medical Rehabilitation (R21).”
Dr. Jackson noted that RCDC categorial definitions and weights can change each year. Perhaps these could be revisited in light of the portfolio analysis. She also cautioned that the rehabilitation category does not include all projects with a rehabilitation focus, and that the category may include some projects that are not rehabilitation related.
The algorithm is a model and will not reach 100-percent agreement, but it will improve as more data are added. Dr. Jackson also said that changes in the overarching NIH budget or changes in other federal funding agencies could affect NIH’s research portfolios.
- One Board member asked about teasing out the impacts of COVID-19 research when 2020 data are analyzed. Dr. Jackson said that it would be possible to identify funded grants under specific requests for applications; another possibility is keyword searches for COVID-19. Dr. Cruz added that NIH flags projects related to COVID-19.
- Another Board member asked why so few nurses are investigators on rehabilitation-related projects. Dr. Nitkin explained that many nurse-researchers are funded through NINR.
Lessons Learned from the Pandemic
Dr. Field-Fote introduced the session, which focused first on the effects of COVID-19 on people with disabilities and their care partners. A second presentation covered how researchers have adapted during the pandemic by modifying their research goals and taking advantage of new opportunities to support therapy interventions.
Disability and Rehabilitation in the Era of COVID-19: Impact on Persons with Disability and Their Carers
Edelle C. Field-Fote, P.T., Ph.D., Chair
Dr. Field-Fote addressed the lack of substantive evidence on the pandemic’s impacts on people with disabilities and their care partners. Most publications have been commentaries, perspective pieces, and suggestions from the healthcare provider community. To identify more robust information, she applied a quasi-standardized method and conducted an environmental scan of the 50 top journals on rehabilitation. The search returned 192 articles, which were then manually searched for relevant information. Dr. Field-Fote highlighted some papers; a few are summarized here:
- A study in Italy involved telephone interviews with 134 participants with physical disabilities. Most reported mild changes in their psychosocial habits and in their perception of illness during lockdown, but they also noted reduced family cohesion and healthcare support.
- A U.S.-based study found that socio-demographically disadvantaged people with disabilities are significantly overrepresented in counties with higher COVID-19 incidence compared to other people with disabilities. People with disabilities who are Black, Asian, Hispanic, Native American, below the poverty line, younger than age 18, and female have been disproportionately affected by COVID-19.
- An international cross-sectional survey of people with Charcot-Marie-Tooth neuropathy showed that the 281 respondents had significantly reduced mobility/physical activity levels and greater pain during the pandemic. Many reported heightened fears of falling.
- Chart reviews for 119 patients revealed that older age, respiratory failure, cardiac conditions, and thromboembolitic conditions were all significant contributors to dependence in activities of daily living. Thromboembolitic conditions were the strongest predictor of physical dysfunction post-discharge.
- A study of caregivers’ experience demonstrated the importance of caregivers’ attendance at therapy sessions as well as frequent, direct communication with staff to improve caregiver readiness for the discharge of a family member.
- For the 312 COVID-19 patients included in a retrospective study, increased frequency and duration of physical therapy visits were associated with a higher probability of being discharged to home and with better mobility at discharge.
Dr. Field-Fote made the following conclusions from the review:
- People with disabilities experience greater impact from COVID-19, including declines in functional status.
- COVID-19 increases risk for neurologic disease and motor impairment, even in the absence of neurologic disease.
- Patients with COVID-19 who receive rehabilitation services are discharged with greater function and are more likely to be discharged to home.
Dr. Field-Fote recommended that Board members read a white paper published on December 1, 2020, by the North American SCI Consortium. The document is a compendium of current evidence-based information and knowledge about COVID-19 related to people living with SCI. The paper also includes an infographic that explains the basics of hand hygiene and provides guidance on disinfecting wheelchairs and other assistive devices.
Dr. Field-Fote said that most reports about the pandemic’s impacts on the disability community are based on retrospective studies and surveys. More hypothesis-driven studies are needed to learn about outcomes of care during the COVID-19 era.
Dr. Cruz recalled a paper on proteomics in SCI describing an associated downregulation of fibrinogen that could be a protective factor against severe COVID-19. Dr. Field-Fote acknowledged that there is a substantial body of literature on the immunology of COVID-19; her focus is on people with disabilities and their care partners.
Dr. Nitkin asked about why mobility would be reduced during the pandemic. Dr. Field-Fote hypothesized that people may have less support. More work is needed to identify risk factors for lowered mobility in terms of care partners, appointments, and so forth.
Research Pivots and Lessons Learned During the COVID-19 Pandemic
Bernadette Gillick, Ph.D., MSPT, P.T., Associate Professor, Division of Physical Therapy, University of Minnesota Medical School
Dr. Gillick explained that she is in the process of transitioning to the University of Wisconsin. When the COVID-19 pandemic struck, her work focusing on pediatric stroke at the University of Minnesota could have paused while she and her team focused on writing papers, but they realized they needed to be resilient and responsive to the community they serve.
Dr. Gillick’s projects aim to answer important research questions, including how to improve the lives—for a lifetime—of children living with cerebral palsy (CP), and how to determine optimal time(s) to intervene. Answering such questions normally requires a great deal of hands-on work in the neonatal Intensive Care Unit, but this line of research halted during the pandemic. She and her team shifted their focus to understanding how the pandemic’s disruption of access to rehabilitation services is affecting children with disabilities and their care partners and then doing something about it.
An international group of 30 people, including Dr. Gillick, held a conference in April 2020 to learn about the pandemic’s effects on noninvasive brain stimulation clinical services and research. They developed a framework for managing and reopening clinics and laboratories: Guidelines for TMS/tES Clinical Services and Research Through the COVID-19 Pandemic.
Effect of the Pandemic on Services: Survey Results
Dr. Gillick reported on the findings1 of a survey designed to learn about COVID-19’s effects on access to rehabilitation therapies and the impact of service disruptions on children and care partners. The anonymous survey was emailed to parents and other care partners of children with childhood-onset disabilities (mainly CP). Dr. Gillick highlighted a few key survey results:
- The percentage of participants receiving one or more therapies per week declined from 92 percent before the pandemic to 54 percent during the survey timeframe (May 15 to July 13, 2020). Hours of therapy per week also decreased significantly.
- The main therapy delivery methods were video calls (76 percent), sessions at therapy centers (22 percent), telephone sessions (16 percent), emails (7 percent), and home visits (5 percent).
- Nearly one-half of participants were satisfied with current therapies, but 40 percent were somewhat or very unsatisfied.
- Forty-three percent of respondents reported a decline in their child’s mobility or movement-related skills.
- Sixty-one percent of respondents reported that their children’s physical activity had decreased.
- Care partners’ mental health declined: 85 percent reported greater burden and higher levels of stress and anxiety.
New Research Opportunities
Dr. Gillick spoke about how she addresses the public’s interest in brain stimulation therapies. People are able to purchase brain stimulation devices on the Internet, and she regularly receives queries about the device settings and potential benefits of therapy. She worked with the Institutional Review Board to develop responses for such queries. In response, Dr. Gillick explains the nature of available research and that research papers are building blocks for what may become an approved intervention.
Dr. Gillick described a study that is investigating the feasibility of remote neuromodulation for children with CP. Tele-neuromodulation is already used for adult rehabilitation after stroke. To evaluate this therapy delivery method, Dr. Gillick’s study team removed the inner mechanisms of the neuromodulators and provided the modified devices to seven participating families. Videoconferencing and real-time photos guided the caregivers, who reduced their setup time after 3 days of training from about 625 seconds to about 325 seconds. They were able to correctly and consistently perform multiple setup steps. All of the children found the device to be tolerable over a 10-minute session. These results will help Dr. Gillick and her team prepare for a study of active device remote monitoring for 10 participants during two sessions: one in the laboratory or home, to include instruction for the parent and child team; and one in the participants’ homes via supervised videoconference. If successful, this study will have far-reaching implications for children and their care partners.
One Board member asked about the satisfaction items on the survey and whether the responses reflected care during the pandemic or new ways of delivering therapy. Dr. Gillick said that the responses fell into two groups: “We’re getting care we never have had access to” or “we were under lockdown and had nothing, but now we have something.” She discussed the relevance of the context of therapies being received and the need for baseline data.
Another Board member asked about follow-up surveys. Some families might have been happy with services early on but now are becoming fatigued with a weekly videoconference intervention. Dr. Gillick spoke about plans for follow-up, saying that the next survey will be designed to understand the impact on the child.
A Board member asked whether survey responses differed between those who discontinued care and those who received modified care when the pandemic struck.
Discussion of the Future of Rehabilitation after COVID-19
Dr. Field-Fote said that remote therapies could be highly beneficial for people who live far away from medical centers. It is important for researchers and clinicians to be active in rural areas to understand the unique nature of rural communities. A Board member added that hybrid sessions could harvest the advantages of center-based and telehealth approaches.
A Board member asked whether the shift to remote therapy is likely to be temporary or whether this new paradigm of rehabilitation is likely to persist, irrespective of the pandemic. If the latter is true, more needs to be learned about the long-term effects. Dr. Gillick said that her work with the international alliance is addressing such questions. This is a pivotal moment that will influence therapy delivery for years to come.
Dr. Field-Fote underscored the importance of finding ways to leverage resources to develop rehabilitation projects that can be done safely with a care partner. Telehealth assessments could reduce the number of research visits.
Another Board member suggested that neuroimaging might be a way to study both the therapist and the child from a neuroscience perspective and observe differences between in-person and remote therapy. Dr. Field-Fote said that the pandemic offers opportunities to understand how distribution of therapy visits affects physical functioning. For example, if a person’s insurance will pay for 12 visits, is it better to have a more intense schedule at the beginning or to space out the visits once a month?
Dr. Gillick said that measurable data are needed to assess changes in how laboratories and services operate, the benefits and risks of remote rehabilitation services, and optimal timing and dosage of therapy. The result could be improved care.
A Board member said that disparities seem to be arising with regard to recruitment of research participants with disabilities. People with severe disabilities may be at higher risk of contracting COVID-19 if they go to large medical centers, making them less likely to participate in research, while other children may be more easily able to access centers and take part in trials.
Dr. Gillick said that older children are able to participate more fully in virtual rehabilitation, but for infants and young children, the parents take the lead. Stephanie DeLuca, Ph.D., spoke about the difference between telecoaching and telerehabilitation. With remote interventions, it is important to understand the community around the person receiving treatment.
Another Board member said that some subgroups may not benefit from telerehabilitation and inquired about the impact of remote care being diluted by lack of intensity or progression. For example, medically complex older people who lack care partners at home may need more conservative approaches because of scant safety features at home. Some individuals have pivoted to telerehabilitation, but they rely on seated chair exercises, which often do not provide sufficient rehabilitation.
Christopher Steele, Ph.D., noted that the DoD has long pursued medicine in and outside of the clinic. Asynchronous telemedicine will also be vital moving forward.
A Board member spoke about digital health navigators who can support patients and families who might benefit from telehealth but have barriers related to the digital divide, health literacy, or social determinants of health.
The Pandemic’s Effect on Trainees
Dr. Gillick said that about one-half of people in her lab left when the pandemic hit. Some went to other labs that were doing different types of work, such as data analysis, which is more amenable to remote work. Researchers are seeking vibrant ideas to fuel their work while maintaining a sense of community to persevere through the pandemic and beyond. New ways of supporting, encouraging, and mentoring trainees are needed to keep the pipeline of talent flowing.
Dr. Field-Fote said that her team is spending more time together through online meetings because they cannot interact in the lab. Also, the focus of their work has shifted to spending time on the literature and identifying knowledge gaps.
Dr. Gillick said that she has spent more time with her team than ever. Also, trainees have been able to take part in international meetings and discussions that have moved to online platforms. Trainees are developing the resilience necessary to succeed in research. The long-term effects are unknown, but the worst-case scenario is not inevitable.
One Board member spoke about possible long-term effects of lab closures on the research pipeline. Major problems may not appear for a couple of years. The top labs will survive—but noted concern for the other 70 percent.
Dr. Cruz said that some proposed economic stimulus packages include funds earmarked for making up for lost research resources and lost time, but none of these measures has passed yet. NIH will likely have to make some hard decisions about whether to fund fewer new grants or make greater investments in larger grants due to sunk costs.
A Board member pointed out that, to succeed, researchers now must be able to work effectively from home, and their communication skills have become more important.
Dr. Gillick suggested that investigators and trainees add information to their biosketches about the effects of the pandemic on their research. This challenge is an opportunity for researchers to collaborate and grow in order to carry out original research on the effects of COVID-19 on rehabilitation services. Dr. Nitkin thought it likely that some young researchers will be able to show that they were innovators during this period.
Final Summary and Planning for the Next Meeting
Edelle C. Field-Fote, PT, Ph.D., NABMRR Board Chair
Dr. Field-Fote asked for ideas for the agenda for the next NABMRR meeting.
One member suggested a discussion of COVID-19’s impact on trainees and strategies to help individuals progress. She recommended hearing from mentors and junior faculty.
Another member said that the pandemic has created a hybrid service model, and she recommended a presentation on the model’s effects from an environmental and a community perspective. A better understanding of rehabilitation ecology is needed to understand whether some children are disadvantaged by a remote therapy environment.
Regarding the need for measurable data, a Board member suggested that data collection from wearable devices and the implications for telerehabilitation could be an agenda item. Dr. Nitkin mentioned two rehabilitation infrastructure networks that are working in this area; there may be an opportunity to learn about how the discussion changes in the COVID-19 era.
Another member suggested comparing telehealth against digital delivery models and identifying rehabilitation interventions that cannot be delivered remotely.
A Board member suggested an update on how outcomes are validated for a hybrid system.
Another said that the role of care partners affects the outcomes of telerehabilitation. He suggested that researchers keep those important roles in mind when designing and developing interventions. A Board member added that many responsibilities are being shifted to care partners, many of whom are working from home and overseeing children’s home schooling. She asked about sources of data on conflicting and overlapping roles that care partners have to balance.
The aging population is significantly affected by the effects of isolation, with effects including failure to thrive. One meeting topic could be a review literature on isolation’s effects. Also, people with disabilities who are living in residential communities may be affected by changes in their routines and social interactions due to the pandemic.
Dr. Cruz reviewed the Board’s suggestions for meeting agenda items:
- The impact of the COVID-19 pandemic on trainees
- Explanations for the sociocultural disparities in the value being derived from telerehabilitation, and the needs of disadvantaged communities to benefit from it
- The advantages and disadvantages of synchronous versus asynchronous telerehabilitation
- The intersection of tele-assessment and digital data capture (e.g., wearables) with telerehabilitation, as well as how to address data sharing and issues such as processing and interference
- Making the best use of the care partner’s role in rehabilitation, especially with the growth in telerehabilitation
- Impact of the pandemic on issues of isolation faced by people with disability, including the needs of those in residential facilities and those aging with a disability
Dr. Field-Fote thanked the Board members for participating in the meeting. The meeting was adjourned at 2:19 p.m.