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Lived Experiences

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¹ This list reflects the rapporteurs’ summary of points made by the identified speakers, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine. They are not intended to reflect a consensus among workshop participants.

The first session of the workshop featured a firsthand account of the experiences and consequences of traumatic brain injury (TBI), from its symptoms and their effects on everyday life to barriers to recovery, including the fragmentation of health care and records. Corinne Peek-Asa, vice chancellor for research at University of California, San Diego, moderated the session.

THE EFFECT OF DATA FRAGMENTATION ON THE EXPERIENCE OF SEEKING AND RECEIVING CARE

Lindsay Simpson, cofounder of the Champion Comeback Foundation, offered a personal account of her efforts to recover from TBI and highlighted changes in the health care system that could better support TBI patients. Although each TBI is unique, there are similarities in symptoms and recovery challenges across the millions of Americans living with these injuries, she said. In 2018, Simpson experienced her eighth documented TBI. Previously able to speak at ease without preparation, she now relies on notes to maintain her train of thought, is unable to memorize lines, and has a lingering speech impediment. In the 2 decades since her first TBI, Simpson has reevaluated her strengths and weaknesses, adapting to areas of deficiency and shifting talents. As her dreams and ambitions have evolved, she has remained determined to continue to improve her functioning and quality of life.

The lack of TBI visibility—both outwardly and on diagnostic imaging—makes the injury and its consequences no less real, she said. Despite people’s assurances that she “looks fine,” Simpson is always aware of the ways in which her TBIs affect her. For instance, she has no sensation in her right leg, neuropathy on her hands, extreme photo and noise sensitivity, and fatigue; she also experiences double vision because her eyes do not converge properly. Describing her life as “a trail of post-it notes, phone reminders, and routines” required to manage her family, foundation, and consulting business, Simpson stated that regaining basic executive functioning skills has required over 4 years of sessions with a TBI-specific psychologist. “My

heart breaks every time my 2-year-old asks me to read him a story, and I can’t,” she shared.

Simpson’s first TBI occurred more than 2 decades ago when she was in 10th grade, resulting in a year’s hiatus from sports and significant decreases in her grades and standardized test scores. Common medical advice at the time encouraged people with concussions to stay home in a dark room and avoid exercising the body or brain. She returned to soccer and played at the collegiate level for the University of Maryland. During a game her sophomore year, she experienced her fifth documented TBI during a collision, which ended both her soccer career and her plans to become a cardiothoracic surgeon, as she was no longer able to take classes that required intense memorization. The effects of the TBI required her to change her life goals. She became a sideline reporter for a major league soccer team and vice president of marketing and communications, but shortly before a 2018 broadcast, a 40-pound railing in the newly constructed stadium came loose and struck the side of her head, causing her eighth TBI. In the past 5 years, Simpson has seen over 30 doctors, surgeons, therapists, psychologists, psychiatrists, and other specialists in a quest for relief from pain and other TBI symptoms. She spent much of the first year after the 2018 injury in bed, feeling weak and dazed and experiencing intense migraines. She had two surgeries, received multiple injections, and at times was taking as many as 20 pills each day. Reestablishing typical abilities—such as dressing herself in the morning and driving at night—has required physical, vestibular, speech, occupational, ocular, and cognitive behavioral therapies.

Given the level of intervention required to regain functionality, people contending with TBI symptoms need support navigating the health care system, said Simpson. Scheduling appointments, researching specialists that understand and treat TBI-specific injuries, and navigating health insurance are activities that require healthy executive functioning. To receive the care needed to improve, patients are expected to handle processes made challenging by their symptoms. Simpson highlighted how fragmentation of health care records, the lack of proper exchange of health information, and uncoordinated care among physicians and therapists exacerbate the challenges patients face, noting the trial and error involved in finding a helpful medical team, as not all neurologists specialize in TBI and not all providers understand it. The health system places the onus of conveying information between various doctors and therapists on the patient, she said. However, she often forgot details and became frustrated repeating the same information time and again.

TBI patients need the support of a “quarterback” to effectively navigate health care systems, said Simpson. A quarterback could assist in finding appropriate providers, explaining symptoms in a way doctors understand,

and directing care from a collaborative approach. Simpson found such a quarterback in her primary care physician (PCP), who has been willing to aggregate her test results and quickly fill prescriptions when a specialist is not responding to refill requests. As helpful as this PCP has been in filling care gaps, she does not have specialized TBI knowledge. Simpson emphasized the potential value of TBI specialists serving in this role by developing robust networks of TBI-focused providers and focusing the care team with a cohesive strategy. Outside of a small number of comprehensive TBI centers, she reflected, such quarterbacks do not exist in the current health system. Despite having worked with various case managers, she asserted that none of these professionals effectively bridged health care silos. Case managers tend to have excessive patient loads, little to no clinical experience, and limited networks outside of their disciplines. She found that working with case managers can sometimes increase frustration with the health system rather than alleviate it. While supporting patients, a TBI quarterback could decrease wasteful expenditures in the medical system by shifting from reactive to proactive care, preventing patients from seeing multiple specialists in the search of finding one who truly understands TBI, and avoiding duplicate tests run by multiple providers.

Simpson noted that such support could help patients feel less isolated and adversarial. These feelings are common in a system that often does not take common challenges for patients into consideration. For example, many offices require patients to complete multipage forms in small font in a waiting room with fluorescent lights and a television loudly playing. She has found that some offices do not provide digital or phone appointment reminders despite her requests for such reminders. In the weeks after her TBI, she relied on her husband—whose employer provided the accommodation of working from home to enable him to continue working full-time—to assist her in completing simple tasks such as making coffee, getting dressed, and arriving at appointments. The TBI significantly limited her functioning, yet her neurologist’s office expected her to keep up with a paper card to remember the date and time of her visits.

She offered the analogy of an orthopedics office located on the fifth floor of a building without an elevator to describe the lack of consideration some providers give to the TBI patient population. This lack of consideration puts patients on the defensive and could be addressed by using floor lamps in lieu of overhead lighting, offering accommodations for questionnaires, turning off televisions, and investing in a digital appointment reminder system, she suggested. In addition to symptoms, many TBI patients are experiencing great loss—such as loss of identity, friends, athletic career, and/or profession—and they may perceive a lack of accommodation as an indication that providers do not fully understand their needs or that their challenges do not matter.

The cost of health care can be prohibitive for many people with TBI, Simpson emphasized. In her 2 decades contending with TBIs, the most effective treatment she has received was a bilateral suboccipital nerve decompression performed by a neurosurgeon. This procedure significantly reduced her debilitating migraines and caused no discernible side effects. Although this procedure changed her life for the better, insurance denied coverage by declaring it experimental, and she and her husband were responsible for the $40,000 expense out of pocket.

Her medications, injections, therapies, and doctor appointments over the years have totaled to hundreds of thousands of dollars, a sum that most Americans are unable to raise. She believes she could benefit from the collaborative approaches offered in the few comprehensive brain injury clinics in the United States, but most of them are inpatient, they require patients to reside in the area for several months, they carry price tags ranging from $30,000 to $50,000, and they are not covered by her insurance because they are categorized as experimental. Simpson voiced her frustration regarding denial of treatment that could decrease chronic symptoms and the lack of efficient pathways for coverage.

Although she continues to contend with chronic symptoms, the nerve release surgery and several practices have aided her recovery. She noted tremendous improvement in her symptoms when she adopted a low-sugar, high antioxidant, anti-inflammatory diet. Noting that she arrived at this nutrition plan via independent research and initiative, she recommended that TBI patient care plans include nutrition information. To exercise her brain by learning new skills, she challenged herself by pursuing bread baking, furniture refinishing, and gardening. Adaptive tools such as light-filtering contact lenses and noise-canceling headphones have decreased confusion brought on by overstimulation. Before adopting the tools, a trip to the grocery store often became disorienting and unnerving. As with nutrition, she learned about these tools not from doctors but from her own research and networking efforts. The lack of resources for others contending with TBI to discover such information led her and her husband to create the Champion Comeback Foundation. She emphasized that without her dedicated, problem-solving husband, she would not have improved as much as she has. Not all people suffering from TBI symptoms have a strong personal support network, she said, and the health care system should close gaps and adjust practices to better meet their needs.

Although Simpson’s experiences are her own, her frustrations are not unique within the TBI community. In preparation for this talk, she explained that she reached out to fellow TBI survivors for input on concerns to emphasize. Danielle, a nurse practitioner who experienced a severe TBI in a 2019 car crash, stated that only those who have suffered a TBI can understand how pervasive its effects are, touching every aspect of life.

She added that practices that have generated the most improvement are often disregarded by allopathic care providers. Jason, a professional soccer player, experienced a series of head injuries until a TBI necessitated his retirement from the sport. He remarked that the U.S. health care system is set up as an authoritative model of dependency in which providers have authority and power. Simpson commented that patients are experts on their bodies in terms of what helps or fails to help; providers should thus encourage and empower patients to pursue any practices that may foster healing. Furthermore, providers should emphasize that the body is always in a state of healing and provide guidance to patients in facilitating that healing. In addition to administering medications, nerve blocks, surgery, and Botox injections, providers can recommend therapies, exercise, nutrition, hydration, supplements, sleep, breath work, meditation, journaling, creative endeavors, and even laughter.

As many as 4 million U.S. athletes will suffer TBI this year, said Simpson. The Champion Comeback Foundation works to connect people contending with a TBI to a network of support and resources, including effective providers in their area.² Simpson’s husband, Nathan Getty, uses his firsthand experience as a caregiver to fuel his efforts to provide information and support to caregivers. She closed by remarking on the astounding ability of the brain to continually repair and recover, and she called on the expert audience to hold steady in their commitment to addressing the problems she and other TBI patients experience.

DISCUSSION

Caregiver Engagement

Peek-Asa asked about opportunities to engage caregivers in the acute care phase of treatment after TBI and beyond. Simpson remarked that TBI is isolating for both the patient and the caregiver. Life shifted dramatically for her husband when she experienced her eighth TBI. Only 6 weeks into their marriage, Getty was suddenly responsible for helping her with dressing and ensuring she did not leave on the gas stove. Lacking a peer-support network to consult about what to do when one’s spouse leaves the stove on for 10 hours or becomes lost at the grocery store, he felt isolated. His work in the foundation is focused on creating such a network for other caregivers in similar situations. She added that support from his employer has been important to her recovery. Understanding that Getty would be better able to be a productive employee if he knew his wife were safe, his employers

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² More information about the Champion Comeback Foundation is available at https://www.championcomeback.org/ (accessed November 10, 2023).

have provided accommodations that allow him to provide needed care while continuing as a full-time employee. Greater awareness of this dynamic could encourage other companies to be similarly accommodating, she suggested.

Health System Data and Collaboration

Peek-Asa asked about features to include or avoid in building medical records and data repositories for TBI. Simpson remarked that while numerous methods of sharing medical notes between providers exist, providers rarely communicate directly with one another about mutual patients. In some cases, a TBI patient may be under the care of a neuropsychologist, a neuropsychiatrist, a TBI neurologist, and a nerve neurologist, all of whom are working within silos and not communicating with one another, aside from sharing notes they may skim during appointments. Acknowledging that building time into providers’ schedules for collaborative communication among providers as well as with the patient and/or their caregivers would constitute a substantial change to the current structure, she stated that incentives could be used to spur this needed change. Data systems that require patients to complete increasing amounts of paperwork—particularly in cases where patients are asked to repeatedly fill out the same information—would be ill informed. She added that it can be emotionally taxing for a patient to share current challenges while a provider is typing the entire time. Although notes are needed, time spent typing can undermine connecting with the patient.

Bruce Evans, immediate past president of the National Association of Emergency Medical Technicians, commented that the type of practices used by tumor boards—a convention of providers that discusses treatment plans for patients with cancerous tumors—could serve as a model for interdisciplinary conversations between providers. James Kelly, professor of neurology at the University of Colorado School of Medicine, remarked on the need to enable the workforce pipeline required for providing comprehensive, collaborative TBI care. David Okonkwo, professor of neurological surgery and director of the Neurotrauma Clinical Trials Center at the University of Pittsburgh, commented that the National Academies’ Forum on Traumatic Brain Injury was born from the challenge of garnering a sufficient workforce to address the issues Simpson raised by shifting public health, military health, and the larger health care system, noting that forum members are working to deliver more objective diagnostic approaches to TBI and to scale multidisciplinary TBI clinic models. He highlighted the overarching need for care systems to learn from existing models of excellence in TBI care, identify how such models could be duplicated and scaled, and establish frameworks that support system learning, a topic of this workshop, all while staying rooted in the needs

of each TBI patient. This critical effort, he suggested, will improve care for the next person to experience TBI.

Medical Disregard of Symptoms

Ramon Diaz-Arrastia, director of the Traumatic Brain Injury Clinical Research Center at the University of Pennsylvania, noted the limited availability of diagnostic tools for many TBIs and asked whether Simpson ever felt that medical professionals discounted her experience as a psychiatric issue. She replied that her life would be substantially different if diagnostic tools could confirm her diagnosis, relieving her of the burden of continually trying to prove to doctors, family, and friends that her symptoms are real. Recounting a doctor who told her she was depressed because she cried in the office, she stated that crying spells are caused by dysregulation of her emotions and are accompanied by outbursts of yelling. “I’m not depressed; I’m scared,” Simpson remarked, sharing that in the midst of great loss she has had to face the difficulty of having doctors tell her that they do not know what is wrong with her or providing a rationale for her symptoms that make no sense, such as a doctor who told her the absence of sensation in her leg was attributable to wearing a heavy tool belt despite the fact that she has never worn a tool belt. The need to prove her symptoms are real is only strengthened when medical offices appear to ignore common TBI symptoms by featuring bright lights and loud televisions in their waiting rooms.

Emergency Medical Services

Evans asked whether emergency medical services (EMS) attended to Simpson after any of her TBIs and her experience of how such prehospital services connected to hospital care and data systems, to inform integration and learning. Given the bright lights, crowded waiting rooms, and collection of sounds common in emergency departments (EDs), Simpson replied that she stubbornly avoids visits to the ED if at all possible. Although she was treated in the ED after some of her TBIs, her most recent and severe TBI was treated by EMS personnel on site at the stadium. After she refused an ED visit, the team doctor treated her and provided clearance for her to seek treatment with him the following day in lieu of going to the ED.

Brain Function and Diet

Noting Simpson’s comments that she needed to take initiative to identify practices that supported her brain wellness, Beth McQuiston, neurolo-

gist, dietitian, and medical director of diagnostics at Abbott Laboratories, remarked on the role of nutrition, healthy living, and alternative practices in optimizing brain function. The lipid membranes of the brain are composed of dietary components, including polyphenols and antioxidants. Thus, diet can have a notable effect on brain function. In recommending brain-healthy diets, she said, providers can empower and encourage patients in their healing.

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