Michael D. Stillman

Health Care Utilization and Barriers Experienced by Individuals With Spinal Cord Injury

OBJECTIVES To identify from whom individuals with spinal cord injury (SCI) seek health care, the percentage who receive preventative care screenings, and the frequency and types of barriers they encounter when accessing primary and specialty care services; and to examine how sociodemographic factors affect access to care and receipt of preventative screenings. DESIGN Cross-sectional, observational study using an Internet-based survey. SETTING Internet based. PARTICIPANTS Adults (N=108) with SCI who use a wheelchair as their primary means of mobility in the community. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Health care utilization during the past year, barriers encountered when accessing health care facilities, and receipt of routine care and preventative screenings. RESULTS All but 1 participant had visited a primary care provider within the past 12 months, and 85% had had ≥ 1 visit to specialty care providers. Accessibility barriers were encountered during both primary care (91.1%) and specialty care (80.2%) visits; most barriers were clustered in the examination room. The most prevalent barriers were inaccessible examination tables (primary care=76.9%; specialty care=51.4%) and lack of transfer aids (primary care=69.4%; specialty care=60.8%). Most participants had not been weighed during their visit (89%) and had remained seated in their wheelchair during their examinations (85.2%). Over one third of individuals aged ≥ 50 years had not received a screening colonoscopy, 60% of women aged ≥ 50 years had not had a mammogram within the past year, 39.58% of women had not received a Papanicolaou smear within the previous 3 years, and only 45.37% of respondents had ever received bone density testing. CONCLUSIONS Individuals with SCI face remediable obstacles to care and receive fewer preventative care screenings than their nondisabled counterparts. We recommend that clinics conduct Americans with Disabilities Act self-assessments, ensure that their clinical staff are properly trained in assisting individuals with mobility disabilities, and take a proactive approach in discussing preventative care screenings with their patients who have SCI.

Accessibility of outpatient healthcare providers for wheelchair users: Pilot study.

The Americans with Disabilities Act (ADA) requires full and equal access to healthcare services and facilities, yet studies indicate individuals with mobility disabilities receive less than thorough care as a result of ADA noncompliance. The objective of our pilot study was to assess ADA compliance within a convenience sample of healthcare clinics affiliated with a statewide healthcare network. Site assessments based on the ADA Accessibility Guidelines for Buildings and Facilities were performed at 30 primary care and specialty care clinics. Clinical managers completed a questionnaire on standard practices for examining and treating patients whose primary means of mobility is a wheelchair. We found a majority of restrooms (83%) and examination rooms (93%) were noncompliant with one or more ADA requirements. Seventy percent of clinical managers reported not owning a height-adjustable examination table or wheelchair accessible weight scale. Furthermore, patients were examined in their wheelchairs (70%-87%), asked to bring someone to assist with transfers (30%), or referred elsewhere due to an inaccessible clinic (6%). These methods of accommodation are not compliant with the ADA. We recommend clinics conduct ADA self-assessments and provide training for clinical staff on the ADA and requirements for accommodating individuals with mobility disabilities.

Complications of Spinal Cord Injury Over the First Year After Discharge From Inpatient Rehabilitation

OBJECTIVES To describe the prevalence and cumulative incidence of secondary complications of spinal cord injury (SCI) in the first year after discharge from inpatient rehabilitation (IR); and to evaluate potential associations between risk of complications and sociodemographic and injury-specific factors. DESIGN Secondary analysis of data collected for a single-site, single-blind, randomized controlled trial comparing telephone follow-up with usual care. SETTING Inpatient rehabilitation units. PARTICIPANTS Adults ages ≥18 years (N=169) within 1 year of discharge from IR after SCI. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Self-report of 10 secondary complications of SCI. RESULTS Participants experienced a mean of 4.7 complications over 12 months. The most frequently reported complications were urinary tract infection (UTI), autonomic dysreflexia (AD), and pressure ulcers, with cumulative incidences of 62%, 43%, and 41%, respectively. Bone and soft tissue injuries (cumulative incidence, 35%) and bowel problems, including impaction or severe constipation (cumulative incidence, 33%), were also common. Cumulative incidences of AD, decubitus ulcers, UTI, and problems with bladder were greater in participants with higher level and more complete injuries, and some recurrent complications were common. Age at injury and impairment level significantly affected rates of complications, and subjects developed an average of 2.33 distinct complications during the study period. CONCLUSIONS People with SCI are at high risk for a number of secondary complications over the first year after discharge from IR. Although these data offer some insight into who with SCI is at highest risk for first time and recurrent complications, further study is needed to refine this understanding and to develop effective educational and prevention strategies.

It’s Rough Out There for Us

Debi was a fastidious woman in her mid-60s. Prompt, precise, and well turned-out, she had earnest eyes, an incisive wit, and a roomy intellect. Debi always carried an electronic tablet with her, and her swiping and tapping lent a syncopated beat to our examination room exchanges. She was simply a treat. Because Debi had a high-level spinal cord injury (SCI) and multiple chronic medical concerns, she preferred to see us both quarterly and paid to be driven the two hours to our Louisville offices to do so. One of these appointments each year would be reserved for an old-style “annual physical,” during which we’d help Debi change into a gown, transfer her to our adjustable-height table, and perform a head-to-toe assessment. During our other visits, however, examinations were quick, as Debi would invariably arrive wielding lists of carefully researched and prepared questions that would often take a full 30 minutes to answer. “I’m over 60 and read that I ought to get a shingles shot.” Debi unpacked her iPad and organized her agenda. We reviewed the pros and cons of that vaccination. “I’m on Miralax but don’t move my bowels daily.” Although we’d addressed this before, we reiterated that daily movements weren’t necessary and scribbled a list of “as-needed” stimulants. “Why are mammograms still so flawed?” Debi’s questions were often redundant and occasionally teleological, but we both adored her and came to consider her a friend. We announced our resignations from our university medical faculty in October 2015 and prior to leaving saw Debi for the last time. She was frantic at the news. Attacking her tablet in a staccato frenzy, she leapt into a forward-looking inquiry, planning the next years and decades of her care. “How often should I have my hematocrit checked?” It had been steady at 37 for the past five years. “You can continue to have it drawn once a year, Debi.” “How will I protect my bones during the bisphosphonate ‘holiday’?” We had discussed this at nearly all her appointments. “You can stay on your calcium and D and have your bone density monitored every year or two.” “If the Fosamax stops working, which other medications can I take?” Neither of us could have predicted that question and hadn’t prepared to discuss parathyroid hormone analogues or RANK ligand inhibitors. “How many days each week would you suggest I exercise?” After 45 minutes of detailed cross-examination, Debi showed no signs of slowing. We asked if something was worrying her, and, miserably tracing loops on her tablet, she croaked, “It’s rough out there for us. I have no idea who will take care of me.” This is a common concern among people living with SCI. In the summer of 2012, our department chair had tasked us with developing a medical “home” for people with SCI. Blending expertise in physiatry (Steve) and internal medicine (Mike), this collaboration was announced by patient advocacy organizations, our therapies staff, and our physician group through mailed flyers, the department’s web page, and social media. Internet-savvy Debi had made sure she was the first to see us. With limited models for providing multidisciplinary care to people with SCI, our first decision was to provide all our services, including primary care, in the physiatry clinic. Most generalists’ offices are inadequately accessible to people with mobility disabilities,1,2 but this space’s common areas, restrooms, and examination rooms were welcoming to patients with disabilities. Further, its staff—accustomed to assisting with transfers, assessing skin integrity, coordinating home care, and ordering durable medical equipment—were sensitive to and knowledgeable about our injured patients’ concerns. Next, we met with the clinical chiefs of our university’s radiology, gastroenterology, urology, gynecology, and orthopedic surgery programs to determine whether their facilities were compliant with Americans with Disabilities Act (ADA) regulations and to develop a list of physicians to whom we could confidently refer our patients. Some of these consultants had specific training and expertise in SCI, while others were simply eager to assist in our effort. We also emailed and spoke with our chief medical and nursing officers, the chair of the emergency medicine department, and the director of the internal medicine residency program, all of whom agreed that patients with SCI requiring inpatient care would be most safely served on the internal medicine teaching service. We instituted plans to have hospitalized patients with injuries shuttled to our campus’ teaching units and prioritized them for admission to the on-call team. Third, we divided clinical responsibilities, deciding which of us would refill prescriptions for controlled substances, complete disability paperwork, and see to specific medical concerns. We ultimately found that a “tag team” approach worked best, as patients would frequently require care when only one of us was available. Mike, however, generally ordered preventive interventions and managed cardiometabolic conditions, while Steve mostly handled neurogenic bowel, neurogenic bladder, sexual dysfunction, and skin integrity. Finally, we needed to ensure that Mike could competently and independently manage many of the complications of chronic SCI, and this was a difficult task. Spinal cord injury may be accompanied by symptomatic orthostasis, bowel and bladder dysfunction, chronic neuropathic pain, muscle and joint pain, and A PIECE OF MY MIND

On Primary Care and Spinal Cord Injury

We congratulate you on publishing Dr. Ho’s excellent article detailing the challenges of providing primary care for people with spinal cord injuries (SCI) (“Primary care for persons with spinal cord injury— not a novel idea but still under-developed”). In citing Drs. Milligan and Lee’s outpatient clinical model and the Veterans Administration System’s “spoke and hub” philosophy, Dr. Ho cogently argues for an interdisciplinary approach in which we firmly believe. Dr. Ho’s call for the development of “standardized SCI primary care guidelines,” while aspirational, may be premature. One of the frustrations of caring for people with SCI is the appalling lack of outcomes research focusing on even common secondary complications. How can care providers and patients agree upon clinical protocols and treatment expectations without knowing how best to screen for and address the osteoporosis and long bone fractures, obstructive sleep apnea, accelerated atherosclerosis, and impaired glucose tolerance that afflict so many people with SCI? Until clinicians and researchers begin to substantively interrogate treatments and outcomes for a spate of prevalent and potentially life-threatening cardio-metabolic complications of chronic SCI, Dr. Ho’s vision of standardized and thorough primary care for people living with injuries will remain unaccomplished.

Healthcare utilization and associated barriers experienced by wheelchair users: A pilot study

BACKGROUND More than twenty-five years after passage of the ADA, little remains known about the experiences of wheelchair users when attempting to access health care and how accessibility may influence health care utilization. OBJECTIVE/HYPOTHESIS To describe health care utilization among wheelchair users and characterize barriers encountered when attempting to obtain access to health care. METHODS An internet-based survey of wheelchair users was conducted. Measures included demographics, condition, socioeconomic status, health care utilization and receipt of preventive services within the past year, physical barriers encountered at outpatient facilities, and satisfaction with care. RESULTS Four hundred thirty-two wheelchair users responded to the survey. Nearly all respondents (97.2%) had a primary care appointment within the past year and most reported 3-5 visits to both primary and specialty care providers. Most encountered physical barriers when accessing care (73.8% primary, 68.5% specialty). Participants received most preventive interventions at rates similar to national averages with the exception of Pap tests. Most participants remained clothed for their primary care evaluation (76.1%), and were examined seated in their wheelchair (69.7%). More than half of participants (54.1%) felt they received incomplete care, and 57% believed their physician had no more than a moderate understanding of their disability-specific medical concerns. CONCLUSIONS Wheelchair users face persistent barriers to care, may receive less than thorough physical evaluations, receive fewer screenings for cervical cancer, and largely believe they receive incomplete care.

Resident Research: The Resident's Unheard Voice

W hen a young and intellectually curious resident was recently asked by his program director to help stimulate resident research, he performed a literature search on how to proceed. In earning his MD and PhD degrees, scientific investigation and clinical training were inseparable siblings, yet knowing little about how academic physicians had incorporated research into their training programs, he felt ill-prepared to offer advice. There exists a substantial literature detailing how to build “cultures of research” and substantively address Accreditation Council for Graduate Medical Education scholarly requirements, yet very little has been written from the house officer perspective. Troubled by this missing voice, he sat to gather his thoughts. His personal interest in research sprung from what some have described as an “exaggerated appreciation of mystery.” He well remembers peering into a microscope as a young student in Germany and wondering how heart muscle cells—isolated from a rat several days earlier—continued to contract in the tissue culture dish. Simply asking the question without also pursuing an answer felt inadequate—an experience he now understands is shared by many researchers-to-be—and years later, as a postdoctoral fellow at the Medical College of Wisconsin, he tested various interventions for potential cell-protecting properties. When he came to University of Louisville for residency training, he knew that the program lacked a dedicated research track that is common in residency training because challenges to support physician-scientists are numerous and stem from the inherent complexities of meeting dual clinical and research training goals. The Division of Cardiology, however, housed several investigators with national and international reputations, and he had heard that interns and residents were encouraged to initiate and collaborate in research projects. He was fortunate to connect early in his 1st year with a mentor who shares his interest in cardiomyocyte preservation and is grateful that his work has been well supported, even as he pursue clinical training. The life of the clinician-researcher—particularly during residency—is not an easy one, but there are many excellent reasons why our trainees ought to pursue investigative work. First, house officers have a unique opportunity to learn fundamental research techniques and to publish their work within departments that foster productivity. Such openings ought not to be squandered because they are more difficult to come by in later stages of one’s career. Second, even residents with research backgrounds may lack ample exposure to the investigative process and may not know whether they want to incorporate this work into their careers. Resident-level research can help trainees clarify their professional goals. Third, research forces us to become disciplined thinkers, teaching us how to ask questions, to learn what is known and not known, to judge if the literature satisfactorily answers our concerns and to pursue medical knowledge in an ethical and valid manner. This intellectual molding benefits us in all of our professional pursuits. Finally, clinical work and research are tightly bound—the former a process of hypothesis testing, the latter directed by patient contact and consideration. Both, he believes, are crucial to a physician’s ability to fulfill his or her greatest potential, and trainees ought to be facile in both. Yet, reality is that meaningful research during residency training is often limited to a few hard-working and enthusiastic trainees who find joy in this type of endeavor and are willing to invest extra hours toward furthering their academic goals. Although an integration of research to clinical training may help raise better doctors, however, several barriers toward meaningful resident research exist to include a lack of resources and difficulty logistics. For example, new resources need to be identified to support time commitments for mentors and trainees alike. Resources are also needed to support research-related expenses that will differ depending on the type of research conducted. To facilitate research during residency training, programs will need to come up with modified models of training that incorporate research in the curriculum, while making accommodations for the ever-increasing clinical workload. These models will need to ensure compliance with duty hour regulations. Defining outcome measures and ensuring some level of uniformity regarding the research experiences provided should also be part of this effort. In addition, consideration should be given to the fact that residents with previous research training, such as the author, may not require much supervision during this training, whereas others will undoubtedly require much supervision and training to have a fulfilling research experience. Should research be a residency requirement, rather than one of several variants of Accreditation Council for Graduate Medical Education-mandated “scholarly” work? Despite the above-mentioned barriers and the legitimate concerns that forcing uninterested trainees into research may adversely affect their opinion of the experience, he believes it should. Aside from the benefits described earlier, a limited though revealing literature tells us that residents who engage in research are more satisfied with their training than those who do not. Trainees who opt out of research, then, may unknowingly bypass rewarding and enjoyable aspects of our work. Additionally, resident research—even during the crucible of an internal medicine training curriculum— is a potentially generative process. George Patton once commented that “pressure makes diamonds,” and there are myriad examples of trainees and junior investigators whose work has garnered international attention. Finally, although inching toward clinical independence, residents are still students, and research involves us in our profession’s historic work of tending to a growing tree of knowledge. In this way, performing research is akin to community service, a task that we hope to enjoy, but which is essential to our collective prospects. A program director cannot simply mandate research because he or she must 1st cultivate a competitive, productive, and prosperous academic milieu. Some ideas for doing so are From the Department of Internal Medicine, University of Louisville, Louisville, Kentucky. Submitted July 20, 2013; accepted in revised form September 23, 2013. The authors have no financial or other conflicts of interest to disclose. Correspondence: Thorsten M. Leucker, MD, PhD, Department of Internal Medicine, University of Louisville, KY 40202 (E-mail: tmleuc01@exchange. louisville.edu).

A more perfect union: Reports from an interdisciplinary primary care clinic for patients with spinal cord injury

Abstract The literature suggests that patients with spinal cord injury may have limited physical access to health care, receive fewer preventive services than able-bodied patients, and rely on physiatrists to provide primary care services. In this essay, the authors – an internist and a physiatrist – reflect on a year-long experience of cooperatively caring for patients with spinal cord injury in an interdisciplinary setting.

Urinary tract infections and bladder management over the first year after discharge from inpatient rehabilitation

Study DesignSecondary analysis of data from a prospective clinical trial of telephone counseling.ObjectivesTo describe changes in bladder management and development of bladder-related complications in the first year after discharge from inpatient spinal cord injury (SCI) rehabilitation. To determine whether urinary tract infection (UTI) is associated with bladder management technique or severity of SCI during this time period.SettingOne SCI Model System center.MethodsPost hoc analysis of bladder-specific responses to a phone intervention meant to reduce secondary complications of paralysis in adults (n = 169) over the first year after discharge from initial inpatient rehabilitation (IR).ResultsBladder management was associated with injury level during and immediately after inpatient rehabilitation, and with American Spinal Injury Association (ASIA) Impairment Scale (AIS) score over the entire year. During one year of follow-up, 19% of patients changed bladder management techniques. Among participants performing intermittent catheterization (IC), 20% had urinary incontinence weekly or more frequently. The cumulative incidence of UTI was 71% by the end of the study, and between 27 and 46% of subjects reported UTIs during each 3-month period. Subjects with spontaneous voiding reported significantly fewer UTIs than those using IC or indwelling catheterization (IDC), but there was no significant difference in UTIs between IC and IDC.ConclusionDuring the first year following discharge, approximately one in five patients changed the bladder management technique and urinary incontinence occurred in a substantial proportion of those performing IC. These findings suggest a need for more frequent monitoring of bladder changes and complications over the first year after IR.

Response to La Fountaine et al.

La Fountaine et al. [1] recently compared the lipid profiles of 401 persons with chronic spinal cord injury (SCI) with those of 197 able-bodied controls. In so doing, they found that adverse serum triglyceride (TG) concentrations in people with SCI are lower than in those without, and reiterated previous insights into links between sympathetic nervous system input and circulating lipid levels. While this article is well reasoned—and each of its authors has substantively contributed to the physiatric literature—the reader is left questioning its clinical relevance. In concluding that clinicians should “consider instituting appropriate dietary, exercise, and/or pharmacological interventions” in patients with elevated TG concentrations, the authors obscure the fact that none of these has been shown to reduce atherosclerotic burden, risk of major adverse coronary events, or cardiac or overall mortality in people with SCI. There are simply no data upon which to base these recommendations. Further, while the authors rightly point to recent guidelines reaffirming that low high-density lipoprotein levels are a major risk factor for cardiovascular disease (CVD) and that TG levels ≥200 may identify individuals at increased risk (Grade B recommendation) [2], it is not clear what to do with this information. A review of the use of fibrates for primary prevention of CVD revealed a modest benefit over placebo for combined endpoints, but none for overall or non-CVD mortality [3]. A separate review of the efficacy of niacin with or without the addition of a statin demonstrated no reduction in overall mortality, cardiovascular mortality, or fatal or non-fatal myocardial infarctions when compared with placebo [4]. While La Fountaine et al.’s article is cleanly written and argued, it underscores the need for a certain aggression in tackling cardio-metabolic disease in SCI. Rather than descriptive analyses of lipid profiles or discussion of how cardiovascular risk factors cluster in people with injuries [5], we need trials of interventions with hard and tangible outcomes. As CVD emerges as the leading cause of mortality among individuals with SCI, what can and ought we do to improve their health and longevity?