Reliability of the International Spinal Cord Injury Physical Therapy-Occupational Therapy Basic Data Set.

In interventional clinical trials for persons with spinal cord injury (SCI), the influence of experimental biological, pharmacological, or device-related interventions must be differentiated from that of physical and occupational therapy interventions, as rehabilitation influences motor-related outcomes. The International Spinal Cord Injury (ISCI) Physical Therapy-Occupational Therapy Basic Data Set (PT-OT BDS) was developed with the intent to track the content and time of rehabilitation interventions that are delivered concurrently with experimental interventions. We assessed the reliability of the PT-OT BDS based on agreement between users. Following an online training session, physical therapists (PTs) and occupational therapists (OTs) from 10 SCI clinical centers across 7 countries participated. At each center, pairs of therapists (a treating therapist and an observing therapist; PT/PT, OT/OT, or PT/OT) used the PT-OT BDS to record the content and time of therapy sessions for 20 patients. Data were analyzed to determine agreement between therapist pairs regarding the content of the therapy session. The influence of therapist characteristics (professional discipline [PT/OT], years of experience working with individuals with SCI), patient characteristics (level [tetraplegia/paraplegia] and severity [complete/incomplete] of injury), setting (inpatient/outpatient), and whether the center was U.S.- versus non-U.S.-based were also analyzed. There was high agreement for five of seven categories and medium agreement for the remaining two categories. For six of the seven intervention categories, there were no significant differences between the treating and the observing therapists in the percentage of instances that a specific category was selected. Characteristics of the therapists, characteristics of the patient, therapy setting, and global location of the center had no meaningful influence on level of agreement between therapist pairs. The BDS is reliable for use across settings, countries, and with patients of various impairment levels. The study also helped identify additional areas where refinement of the syllabus would be of value.

Disability-Specific Education in US Internal Medicine Primary Care Residency Programs: A Survey of Program Directors.

Phenomenon: The dearth of disability-specific education in United States medical schools and residency programs has perpetuated health care inequities experienced by people with disabilities. In this study, we surveyed internal medicine primary care residency program directors about the disability-specific education they offer their learners, their attitudes toward physicians' preparedness to care for people with disabilities, and their perceived challenges to offering more robust disability-specific education. Approach: We developed an on-line survey and forwarded it in 3 weekly emails during October of 2022 to 104 primary care residency program directors. We collected basic information about the residency programs and queried whether they were providing disability-specific education to their residents, which topics were being covered, and perceived barriers to offering additional disability-focused curricula. Data analyses included descriptive statistics, chi-squared, and independent samples t-tests. Findings: Forty-seven program directors responded (response rate 45.2%). The largest plurality of programs was in the Northeast, their average number of primary care residents was 15.6, most (67.4%) hosted primary care clinics in hospitals or academic centers, and 55.6% had affiliated divisions or departments of rehabilitation medicine. The majority of respondents felt that both internists and their own residents (88.3% and 77.8%, respectively) are inadequately educated in the care of people with disabilities, yet only 13 (28.9%) offered disability-focused curricula, and they tended to be narrow in scope. Only 8 of those 13 respondents (61.5%) reported that their disability curricula were required, rather than optional. Participants listed a number of barriers to implementing disability-focused education including a lack of advocacy for such work (65.2%), lack of time in the curriculum (63.0%), lack of expectation by educational governing boards that physicians understand disability-specific care considerations (60.9%), and lack of affiliated expertise in the care of people with disabilities (52.2%). Insights: While the program directors training future primary care physicians largely understand that physicians are inadequately prepared to offer equitable health care to individuals with disabilities, few of them are offering disability-specific education to their residents and most see significant barriers to doing so.

An Assessment of Which Sociodemographic and Spinal Cord Injury-Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials.

Background: Although a number of experimental therapies for spinal cord injury (SCI) have recently emerged, few authors have examined the goals of individuals with SCI considering experimental therapies, and none have determined whether sociodemographic and injury-specific characteristics influence that engagement. Objectives: To determine (a) the goals of individuals with SCI who are considering experimental therapies; (b) whether sociodemographic factors, injury-specific characteristics, and concerns over adverse events influence those goals and/or participation in experimental therapies and clinical trials; and (c) whether people with SCI feel they have adequate information about experimental therapies and clinical trials. Methods: An online survey that yielded 364 responses. Results: Most respondents (83.7%) had sought information about experimental therapies, and just under half (47.8%) had received one. The most frequently cited functional goals were improvement in bowel and bladder function and elimination of dysreflexia (60.4%). Several goals were influenced by age and level and completeness of injury, and most respondents (93.4%) wanted more information about experimental therapies. Just over one-third (34.6%) of respondents had participated in a clinical trial, and nearly all (96.9%) wanted more information about them. Having received experimental therapies and participated in clinical trials was positively correlated with seeking SCI-specific care from an SCI specialist rather than from a primary care physician. Most (83.9%) respondents would avoid or be reluctant to engage with a medical center if they were made aware of harm done to trial participants. Conclusion: This work suggests that there are unmet information needs among people with SCI, specifically pertaining to experimental therapies and clinical trials. It also reveals that improved access to SCI specialists may enhance access to novel treatments and research efforts. Being made aware of harm to trial participants may influence the decision of individuals with SCI to seek care at or enroll in trials at these clinical sites.

COVID-19 and spinal cord injury and disease: results of an international survey as the pandemic progresses.

STUDY DESIGN: An online survey. OBJECTIVES: To follow-up with and re-query the international spinal cord community's response to the Coronavirus Disease 2019 (COVID-19) pandemic by revisiting questions posed in a previous survey and investigating new lines of inquiry. SETTING: An international collaboration of authors and participants. METHODS: Two identical surveys (one in English and one in Spanish) were distributed via the internet. Responses from both surveys were pooled and analyzed for demographic and response data. RESULTS: Three hundred and sixty-six respondents were gathered from multiple continents and regions. The majority (63.1%) were rehabilitation physicians and only 12.1% had patients with spinal cord injury/disease (SCI/D) that they knew had COVID-19. Participants reported that the COVID-19 pandemic had caused limited access to clinician and support services and worsening medical complications. Nearly 40% of inpatient clinicians reported that "some or all" of their facilities' beds were being used by medical and surgical patients, rather than by individuals requiring inpatient rehabilitation. Respondents reported a 25.1% increase in use of telemedicine during the pandemic (35% used it before; 60.1% during), though over 60% felt the technology incompletely met their patients' needs. CONCLUSION: The COVID-19 pandemic has negatively impacted the ability of individuals with SCI/D to obtain their "usual level of care." Moving forward into a potential "second wave" of COVID-19, patient advocacy and efforts to secure access to thorough and accessible care are essential.

A survey of internal and family medicine residents: Assessment of disability-specific education and knowledge.

BACKGROUND: The literature suggests that primary care physicians are inadequately educated in the care of people with disabilities. No study to date has evaluated whether internal medicine (IM) and family medicine (FM) residents have received disability-specific education or their level of comfort in caring for people with physical disabilities. OBJECTIVES: To assess IM and FM residents' receipt of disability-specific education during medical school and residency; to evaluate their self-reported comfort in managing secondary conditions associated with physical disabilities and in coordinating therapies and services for individuals with disabilities; to gauge their interest in receiving disability-specific education. METHODS: An on-line survey distributed to residents at a convenience sample of ten academic IM and FM residency programs in the northeastern United States. Participants (n = 176) were asked about their socio-demographic and training-specific characteristics and their self-assessed ability to manage secondary conditions associated with physical disabilities and coordinate care and services for individuals with disabilities. Chi Square tests were used to compare participant characteristics and outcomes. RESULTS: Few participants had received disability-specific education during medical school or residency (34.6% and 11.2%, respectively), and nearly all (96.0%) expressed interest in receiving more. Small minorities reported feeling comfortable managing common secondary conditions or in coordinating therapies and services for individuals with disabilities. CONCLUSION: Although one-fifth of adult Americans have a disability, few of our participating IM and FM residents had received disability-specific education or felt comfortable managing the care of people living with disabilities. Our results indicate a need to develop and disseminate disability-specific curricula.

How individuals with spinal cord injury in the United States access and assess information about experimental therapies and clinical trials: results of a clinical survey.

STUDY DESIGN: An internet-based survey. OBJECTIVES: To determine how individuals with spinal cord injury (SCI) access information about experimental therapies and clinical trials. To understand which factors influence receipt of and perceived trustworthiness of that information. SETTING: Two academic medical centers and an SCI organization. METHODS: Demographic information frequencies and percentages were calculated then analyzed using chi-square tests for independence. Fisher's exact test of independence was used to assess significance for contingency tables with categories containing expected counts below five. RESULTS: Three hundred sixty four persons with SCI participated in the survey. Most felt confident in their ability to evaluate SCI-specific information from a variety of sources, though SCI organizations and the medical literature were deemed the most reliable. Information from SCI specialists was deemed more credible than that from non-SCI specialists, but only 53.6% of participants had access to them. Nearly all (89.0%) respondents who had sought information about experimental therapies had found it online, while 51.4% of those who had participated in a clinical trial had been contacted by a research team. Only 8.4% of participants felt their medical teams offered them sufficient information about experimental therapies and clinical trials. Wealthier and more educated respondents were more knowledgeable about health-related resources on the internet. Nearly all participants (96.9%) expressed interest in learning more about trials related to SCI. CONCLUSIONS: There is an information deficit among people with SCI pertaining to experimental therapies and clinical trials. It is exacerbated by lack of income, education, and access to SCI specialists.

How do healthcare providers manage depression in people with spinal cord injury?

STUDY DESIGN: An online survey. OBJECTIVES: To describe how healthcare providers manage depression after spinal cord damage (SCD) and to identify factors that predict use of recommended depression management practices. SETTING: An international cohort of respondents who provide clinical care to individuals with SCD. METHODS: An online survey was distributed to clinicians caring for individuals with SCD. The 20-question survey inquired about participant demographic and professional information, their knowledge and beliefs about depression after SCD, their methods of treating depression in SCD, and perceived barriers to treatment of depression. RESULTS: One hundred eleven individuals took this survey. Participants estimated on average that 48.7% of their patients with SCD have depression, and nearly two-thirds (62.2%) reported using their own clinical judgment to identify the condition. Respondents cited barriers to depression treatment including patient denial of depression (47.7%), stigmas attached to depression (41.4%), and lack of availability and high cost of counseling (45.9% and 35.1%, respectively) and antidepressant medications (5.4% and 10.8%, respectively). The belief that one is well trained to handle depressive symptoms predicted increased frequency of screening for depression and implementation of recommended treatments for depression. CONCLUSIONS: Respondents to this survey under-utilize valid screening measures and likely over-estimate the prevalence of depression in SCD. They cited a number of barriers to treatment for depression. Our results underscore the need for improved mental health education among SCD providers and the use of valid depression screening measures to help focus limited mental health services and treatments on those who need them.

COVID-19 and spinal cord injury and disease: results of an international survey.

STUDY DESIGN: An online survey. OBJECTIVES: To query the international spinal cord medicine community's engagement with and response to the novel coronavirus (COVID-19) pandemic and to assess pandemic-specific information needs and patient concerns. SETTING: An international collaboration of authors and participants. METHODS: Two near-identical surveys (one English and one Spanish language) were distributed via the internet. Responses from those questions shared between the surveys were pooled then analyzed; four questions' responses (those not shared) were analyzed separately. RESULTS: A total of 783 responses were submitted from six continents. Few participants (5.8%) had tested their outpatients with SCI/D for COVID-19; only 4.4% reported having a patient with SCI/D with the virus. Of respondents who worked at an inpatient facility, 53.3% reported that only individuals with symptoms were being screened and 29.9% said that no screening was occurring. Participants relayed several concerns offered by their patients with SCI/D, including vulnerability to infection (76.9%) and fragility of caretaker supply (42%), and those living in countries with guaranteed health care were more likely to report widespread availability of COVID-19 testing than were those living in countries without universal care, χ2 (3, N = 625) = 46.259, p < 0.001. CONCLUSION: There is substantial variability in the rehabilitation medicine community in COVID-19 screening practices and availability of screening kits. People living with SCI/D are expressing legitimate and real concerns about their vulnerability to COVID-19. More and rapid work is needed to address these concerns and to standardize best-practice protocols throughout the rehabilitation community.

International survey responses from an interdisciplinary cohort of spinal cord injury clinicians assessing professional burnout and meaning in work.

Study design: While clinicians who care for patients with spinal cord injury may experience heightened levels of workplace stress related to secondary trauma, little is known about the characteristics of burnout and potential protective factors among interdisciplinary professionals who care for this distinct clinical population. An online survey of self-reported burnout symptoms and meaning in work was conducted to assess the prevalence of burnout and characteristics of meaning in work among spinal cord injury professionals. Objectives: To assess symptoms of professional burnout and meaning in work among a broad-ranging cohort of spinal cord injury clinicians and researchers. Setting: A group of international spinal cord injury professionals. Methods: An online survey was developed using commonly assessed metrics of burnout and meaning in work based upon prior literature. Results: A majority of survey respondents reported feeling exhaustion (60.1%), while fewer reported feelings of burnout (41.1%) or work-life imbalance (31.9%). Many respondents found support in personal relationship from friends and family and reported using various strategies to deal with work stress, including exercise, meditation, and engaging in personally meaningful activities outside of work. Conclusions: Exhaustion is a prevalent issue for many spinal cord injury professionals and burnout appears to be a significant issue for a subset of responders, yet despite potential workplace stressors, spinal cord injury professionals reported high meaningfulness of work, positive impact from colleagues, and satisfaction with intellectual stimulation at work.

Utilization of medicinal cannabis for pain by individuals with spinal cord injury.

Study design: A cross-sectional multi-center study using an on-line survey addressing utilization, knowledge, and perceptions of medicinal cannabis (MC) by people with spinal cord injury (SCI). Objective: To characterize differences between current (CU), past (PU), and never users (NU) of MC with SCI; to determine why people with SCI use MC; to examine reports of MCs' efficacy and tolerability by individuals with SCI. Setting: Three academic medical centers in the United States. Methods: Comparison of demographic and attitudinal differences between CU, PU, and NU and differences in the groups' reports of pain, health, and quality of life (QOL). Evaluation of utilization patterns and perceived efficacy of MC among CU and PU and reports of side effects of MC versus prescription medications. Data were analyzed using either Chi Square, distribution-free exact statistics, or t-tests for continuous data. Results: Among a nationwide sample (n = 353) of individuals with SCI, NU were less likely than CU and PU to believe that cannabis ought to be legalized and more likely to endorse risks of use. Current users and PU reported greater pain interference in daily life than did NU, but there were no between group differences in QOL or physical or emotional health. Current users and PU took MC to address pain (65.30%), spasms (63.30%), sleeplessness (32.70%), and anxiety (24.00%), and 63.30% reported it offered "great relief" from symptoms. Participants reported that MC is more effective and carries fewer side effects than prescription medications. Conclusions: Medicinal cannabis is an effective and well-tolerated treatment for a number of SCI-related symptoms.