The Long-term Impact of TBI and Rehabilitation Needs: Findings from IMAP: An Interview with Risa Nakase-Richardson, PhD, FACRM
The interview will highlight recently published findings regarding common comorbidities in chronic stages of TBI, rehabilitation and family needs, and healthcare access issues in Veterans and Service Members enrolled in a large multi-center study (IMAP). Findings are included in a recent report to Congress regarding the long-term impact o[f] TBI on Service Members, Veterans, and their families.
Risa Nakase-Richardson, PhD, FACRM is a Neuropsychologist at the James A. Haley Veterans Hospital and Professor and Research Director in Sleep
Medicine at the University of South Florida. She has over 125 peer-reviewed publications and has served as PI or Investigator on 21 grants funded by
various federal agencies and private organizations. She has worked at the VA Polytrauma Rehabilitation Center in Tampa Florida since 2008 where
she serves as the Project Director for the VA TBI Model Systems and the Overall PI for Improved Understanding of Medical and Psychological Needs
(I-MAP) in Veterans and Service Members with Chronic TBI.
As the overall Principal Investigator for the Improved Understanding of Medical and Psychological Needs (I-MAP) study, can you briefly summarize your role and the primary objectives of this congressionally-mandated study?
Following our nation’s longest war, Congress wanted to garner evidence about the long-term effects of TBI. A 15-year study was stood up led by Dr. Lou French within DOD. To represent the full spectrum of military health, the VA-arm of this study is being led by me. As the principal investigator, I work with investigators across the VA TBI rehabilitation centers of excellence to enroll active-duty service members and Veterans who are hospitalized for TBI. The VA and DOD have a longstanding collaborative agreement thus Service Members are treated in VA healthcare systems for specific conditions including TBI. For this study, participants admitted for TBI are enrolled in the VA TBI Model Systems program of research which was enhanced to address the informational needs of congressional policymakers and utilizes a mixed methods approach informed by a wide variety of scientists. Congress has focused on four key informational needs including overall health (psychological, physical), rehabilitation needs, health service needs, and family impact of TBI. We submit reports at regular intervals to DOD and
VA policymakers who finalize an official Congressional Report submitted at 3, 7, 11, and 15 years since the mandate inception. We garner input from a wide variety of scientists and gather stakeholder input to ensure we are considering all perspectives on study findings. Last year the 11-year report was submitted to Congress, and we are busy collecting, analyzing, and disseminating results for the final 15-year report.
What were the most prominent study findings and priorities outlined in your latest report to Congress?
The most prominent finding was that comorbidities (both physical and psychological) are the norm in chronic stages and add to the burden that we normally consider unique to TBI. The report spoke at length about the impact of PTSD on the patients and their families and was notably associated with poor outcomes
including negative legal consequences. From a physical health standpoint, chronic pain, sleep disorders, orthopedic injuries, cardiovascular disease, sexual dysfunction, and gastrointestinal disease were among the most common comorbid conditions. One of the challenges in managing comorbidities is misattribution that symptoms are due to TBI rather than other health disorders which can be treated with evidence-based interventions. Indeed, our work has highlighted that these comorbidities are common in chronic stages and are uniquely associated with impaired cognition, poor physical health, lower rates of community re-entry including employment/participation, and poor psychological health after controlling for TBI. Earlier recognition of these comorbidities and access to evidence-based treatments may help improve outcomes even for those in chronic stages. In response to these findings, the report outlined several priorities, including the incorporation of interdisciplinary treatment planning and dedicated case management to track emerging needs. Speaking as a provider, one of the greatest advantages of providing treatment at a site like a VA polytrauma rehabilitation center is working with an interdisciplinary team that meets regularly and has access to a myriad of specialty providers to help address comorbid conditions. For example, sleep medicine is co-located at our facility and able to diagnose and implement treatment during hospital stays rather than waiting to have sleep problems identified and treated over a prolonged interval as an outpatient. With regards to prioritizing case management, our findings indicated that once a person returns to his or her community, access barriers start to emerge. Access barriers differed across injury severity groups and environmental factors are consistently associated with having unmet needs. However, comprehensive and dedicated case management services for TBI patients—like those in place at VA Polytrauma Rehabilitation Centers—have programs and protocols in place to bring patients and families back in later stages to address emerging needs. VA and DOD have committed to case management after TBI in acute and chronic stages (unlike civilian healthcare) to help facilitate those service needs. One of the cool things to observe in this process is the response from DOD and VA to our study findings. Policymakers from both review study results which can and do result in actionable steps to improve healthcare delivery for our Service Members and Veterans. Indeed, the process of writing the report is a policy intervention which is exciting. The full report can be found at: [https://www.health.mil/Reference-Center/Congressional- Testimonies/2021/05/04/Longitudinal-Study-on-Traumatic-Brain- Injury-Incurred-by-Members-of-the-Armed-Forces-in-OIF-OEF]
You mention the significance of good case management following a TBI to identify and address emerging needs. Based on your work, can you elaborate a bit on the long-term implications of having unmet rehabilitation needs in chronic TBI?
Our work has highlighted that persons with a history of TBI have unmet rehabilitation needs even at five-years post-TBI and that greater number of unmet needs is associated with lower satisfaction with life. Follow-up work for the next congressional report will look at later years and more impacts. Our use of the term rehabilitation need is not limited to delivery of more PT, OT, SLP, or RT. Rehabilitation as an intervention addresses the whole person
thus we asked about needs that encompass many domains often addressed by an multidisciplinary team such as psychological health (emotions, stress, anger), service coordination, physical health, cognitive health, education/employment, independent living, transition to civilian life, maintaining relationships, opportunities
for social engagement, addiction, informational needs and more. Indeed, needs exist in later stages of TBI and a fair number in our study sample are unmet. Most rehabilitation systems are frontloaded in terms of care for TBI thus these findings highlight that our V/SM have needs and many are unmet in later stages. How to best address them is not the focus of our study but it has gotten people talking.
What are the primary concerns amongst patients reporting unmet rehabilitation needs?
Priorities vary across injury severity and racial groups. In terms of prioritization of needs, the data tell us what Active Duty Service Members and Veterans with TBI are most concerned about. Indeed, the priorities vary by injury severity and by racial groups. Overall, persons endorsing black racial status reported having a greater number of unmet rehabilitation needs than persons endorsing white racial status. The number one unmet need for black participants was help with managing emotions/psychological health (52% compared to white race, 23%). For white participants, the number one unmet need was in addressing cognition (38%
compared to black race, 44%). Providers should take these racial differences into consideration when developing treatment priorities with patients. Participants
endorsing unmet needs consider them important thus should help shape the development of treatment plans. As stated in my response to prior questions, lots of factors contribute to these needs thus practitioners will need to educate their patients and families about other non-TBI contributing factors and make
appropriate referrals to address them.
Are there specific rehabilitation treatment models or approaches that you would recommend when addressing these concerns?
Helping patients understand the link between their primary TBI concerns and alternative explanations is really important. Our qualitative data collection with patients highlighted that providers may ignore the primary concern and just refer them to treatments that they didn’t understand were important (for their primary
concern). What a patient believes is important (i.e., they identified it as a rehabilitation need) is at the heart of the patient-centered care movement in healthcare delivery. However, the goals of treatment can be aligned in a shared decision-making processes rather than disregarding the opinion of either the patient or the provider. When I have someone concerned about cognition (the number 1 rehab need identified in our study when combining all groups) who believes that their difficulties are due to their history of remote TBI, as a provider I have to provide information about other contributing factors to cognition that may need to be treated. In that context, I am not ignoring their concerns about cognition but sharing information that they may not know and help them see the connection between other problems (e.g., poor sleep, depression, PTSD) to cognitive dysfunction rather than TBI. In a therapeutic context with good rapport, I try to help patients see that connection to their concerns so that they are willing and motivated to engage in the treatment.
Any advice for solo-providers out there?
It is challenging to comprehensively address TBI as a solo provider. Providing education to persons with TBI and caregivers is important so that they will have “buy-in” to pursue other paths for symptom relief. For example, helping them understand the importance of specific follow-up appointments and how that may address their primary concern is so helpful. Engagement with our patient and family stakeholders during the study highlighted that this education from a trusted provider was critical for patient and caregiver buy-in. The Defense Health Agency TBI Center of Excellence (TBI COE) has excellent educational materials (https://health.mil/TBICOE) as well as the TBI Model Systems Knowledge Translation Center (www.msktc.org) that can be used with persons with TBI and their families to understand TBI and common comorbid conditions.
What are your plans for the final 15-year Report to Congress?
Our big focus quantitatively will be analyzing the VA TBIMS and IMAP data on 10 and 15-year outcomes across each mandated element. Additionally, we have also successfully merged our TBI characterization data with health care administrative data to more comprehensively examine healthcare utilization and VA/
DOD cost across specific time intervals after TBI and for specific injury severity groups using gold-standard metrics of injury. Finally, our qualitative research team will be collecting data across the civilian, VA, and DOD healthcare infrastructure to understand perception of needs and how to best address them in chronic stage of military TBI. We are engaging with several stakeholder groups to ensure all perspectives are considered when writing up our final results for policymakers. Indeed, it has been a privilege to work with Dr. French’s DOD team and the VA IMAP team to frame the consequences of the signature injury of our nation’s longest war for those in a position (policymakers) to change military healthcare for the better. Our collaborations with the National Institute on Disability, Independent Living, and Rehabilitation Research TBI Model Systems has helped inform how findings have implications for civilian healthcare as well. Indeed, ongoing discussions for adapting our methods and area of focus to gather information for civilians with TBI are in progress. Further, our engagement with nonmilitary TBI advocacy organizations and stakeholder groups will help inform where there are system challenges for Veterans and Service Members who utilize civilian healthcare. Our hope is that findings will have policy implications for the TBI healthcare regardless of where services are received.