Health impacts reported in the Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES).

CONTEXT: In people with spinal cord injury (SCI), infections are a leading cause of death, and there is a high prevalence of diabetes mellitus, obesity, and hypertension, which are all comorbidities associated with worse outcomes after COVID-19 infection. OBJECTIVE: To characterize self-reported health impacts of COVID-19 on people with SCI related to exposure to virus, diagnosis, symptoms, complications of infection, and vaccination. METHODS: The Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES) study was administered to ask people with SCI about their health and other experiences during the COVID-19 pandemic. RESULTS: 223 community-living people with SCI (male = 71%; age = 52±15 years [mean±SD]; paraplegia = 55%) completed the SCI-CPES. Comorbidities first identified in the general population as associated with poor outcomes after COVID-19 infection were commonly reported in this SCI sample: hypertension (30%) and diabetes (13%). 23.5% of respondents reported a known infection exposure from someone who visited (13.5%) or lived in their home (10%). During the study, which included a timeframe when testing was either unavailable or scarce, 61% of respondents were tested for COVID-19; 14% tested or were presumed positive. Fever, fatigue, and chills were the most common symptoms reported. Of the 152 respondents surveyed after COVID-19 vaccines became available, 82% reported being vaccinated. Race and age were significantly associated with positive vaccination status: most (78%) individuals who were vaccinated identified as Non-Hispanic White and were older than those who reported being unvaccinated (57±14 vs. 43±13 years, mean±SD). CONCLUSIONS: Self-reported COVID-19 symptoms were relatively uncommon and not severe in this sample of people with SCI. Potential confounders and limitations include responder, recruitment and self-reporting biases and changing pandemic conditions. Future studies on this topic should query social distancing and other behavioral strategies. Large retrospective chart review studies may provide additional data on incidence and prevalence of COVID-19 infections, symptoms, and severities in the SCI population.

Development of the Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES).

CONTEXT: Early during the COVID-19 pandemic, rehabilitation providers received reports from people with spinal cord injury (SCI) of considerable disruptions in caregiver services, medical and nursing care, and access to equipment and supplies; concomitantly, the medical community raised concerns related to the elevated risk of acquiring the infection due to SCI-specific medical conditions. Due to the novel nature of the pandemic, few tools existed to systematically investigate the outcomes and needs of people with SCI during this emergency. OBJECTIVE: To develop a multidimensional assessment tool for surveying the experience of the COVID-19 pandemic on physical and psychological health, employment, caregiving services, medical supplies and equipment, and the delivery of medical care for people with SCI. METHODS: The Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES) study, conducted between July 2020 through August 2021, surveyed people with SCI about their experiences during the early COVID-19 pandemic. The SCI-CPES was developed by a SCI care and research consortium using an iterative process. RESULTS: Two hundred and twenty-three people completed the survey. Most respondents resided in the consortium catchment area. As the survey progressed, online informed consent became available allowing dissemination of the SCI-CPES nationally. CONCLUSIONS: The consortium rapidly implemented the capture of experiences with COVID-19 pandemic directly from people with SCI, including survey creation, institutional approvals, distribution, online e-consenting, and data collection. In the future, the SCI-CPES is adaptable for use in other types of emergencies and disasters.

The experience of using a hospital bed alternative at home among individuals with spinal cord injury: A case series.

OBJECTIVE: To inform clinicians' equipment recommendations by characterizing the experiences, skin integrity, and interface pressures in a series of recently discharged individuals with spinal cord injury (SCI) who chose to use an alternative adjustable bed system at home rather than a standard of care hospital bed with mattress overlay. DESIGN: Mixed methods, observational case series. SETTING: Community based. METHODS: Four individuals with cervical SCIs and one partner of a participant with SCI completed interviews about their experiences using an alternative adjustable bed system and their skin health. Participants also underwent pressure mapping on their alternative adjustable bed system and on a standard of care hospital bed with mattress overlay. Interview themes were identified using a consensus qualitative approach. Pressure readings at the sacrum and ischial tuberosities in supine and at the greater trochanter in side lying were compared between surfaces. OUTCOME MEASURES: Semi-structured interview, questionnaire, and pressure mapping. RESULTS: All participants reported positive experiences utilizing an alternative adjustable bed system and no episodes of bed-related skin breakdown. Reasons for wanting an alternative adjustable bed included a greater sense of normalcy and larger size. Participants perceived their alternative beds to be comfortable, and to have features that aided their function and assisted their caregivers. Features used included head of bed elevation, height elevation, and bed rails. All participants had clinically acceptable pressure mapping patterns on the alternative adjustable bed system. CONCLUSION: An adjustable bed system, combined with other skin protection strategies, may be appropriate for certain individuals with spinal cord injury.

Utilization of Complementary and Integrative Health Care by People With Spinal Cord Injury in the Spinal Cord Injury Model Systems: A Descriptive Study.

OBJECTIVE: To characterize the use of complementary and integrative health care (CIH) by people with spinal cord injury. DESIGN: Cross-sectional self-report study. SETTING: Participants were recruited from 5 Spinal Cord Injury Model Systems (SCIMS) centers across the United States. INTERVENTIONS: Not applicable. PARTICIPANTS: A total of 411 persons enrolled in the SCIMS completing their SCIMS follow-up interview between January 2017 and July 2019 (N = 411). MAIN OUTCOME MEASURES: Participants completed a survey developed for this study that included questions about types of CIH currently and previously used, reasons for current and previous use, reasons for discontinuing use of CIH, and reasons for never using CIH since injury. RESULTS: Of the 411 respondents, 80.3% were current or previous users of CIH; 19.7% had not used CIH since injury. The most commonly used current types of CIH were multivitamins (40.0%) and massage (32.6%), whereas the most common previously used type of CIH was acupuncture (33.9%). General health and wellness (61.4%) and pain (31.2%) were the most common reasons for using CIH. The primary reason for discontinuing CIH was that it was not helpful (42.1%). The primary reason for not using CIH since injury was not knowing what options are available (40.7%). CONCLUSIONS: These results point to the importance for rehabilitation clinicians to be aware that their patients may be using 1 or more CIH approaches. Providers should be open to starting a dialogue to ensure the health and safety of their patients because there is limited information on safety and efficacy of CIH approaches in this population. These results also set the stage for further analysis of this data set to increase our knowledge in this area.

Characterizing the Experience of Spasticity after Spinal Cord Injury: A National Survey Project of the Spinal Cord Injury Model Systems Centers.

OBJECTIVE: To characterize the qualities that individuals with spinal cord injury (SCI) associate with their experience of spasticity and to describe the relationship between spasticity and perceived quality of life and the perceived value of spasticity management approaches. DESIGN: Online cross-sectional survey. SETTING: Multicenter collaboration among 6 Spinal Cord Injury Model Systems hospitals in the United States. PARTICIPANTS: Individuals with SCI (N=1076). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Qualities of Spasticity Questionnaire, modified Spinal Cord Injury-Spasticity Evaluation Tool (mSCI-SET), and the modified Patient-Reported Impact of Spasticity Measure (mPRISM). RESULTS: Respondents indicated that spasms most often occurred in response to movement-related triggering events. However, spontaneous spasms (ie, no triggering event) were also reported to be among the most common types. Frequency of spasms appears to decline with age. The highest frequency of spasms was reported by 56% of respondents aged <25 years and by only 28% of those >55 years. Stiffness associated with spasticity was reported to be more common than spasms (legs, 65% vs 54%; trunk, 33% vs 18%; arms, 26% vs 15%). Respondents reported negative effects of spasticity more commonly than positive effects. Based on their association with negative scores on the mSCI-SET and the mPRISM, the 5 most problematic experiences reported were stiffness all day, interference with sleep, painful spasms, perceived link between spasticity and pain, and intensification of pain before a spasm. Respondents indicated spasticity was improved more by stretching (48%) and exercise (45%) than by antispasmodics (38%). CONCLUSIONS: The experience of spasticity after SCI is complex and multidimensional, with consequences that affect mobility, sleep, comfort, and quality of life. Stiffness, rather than spasms, appears to be the most problematic characteristic of spasticity. Physical therapeutic interventions to treat spasticity warrant in-depth investigation.

Pilot clinical trial of a clinical meditation and imagery intervention for chronic pain after spinal cord injury.

OBJECTIVE: To assess the feasibility and potential benefits of clinical meditation and imagery (CMI) for people with chronic spinal cord injury (SCI) and chronic pain. DESIGN: Pilot randomized, controlled trial. SETTING: Outpatients with SCI in the United States. PARTICIPANTS: 24 adults with chronic SCI (>1 year) and a >3 month history of pain rated ≥4/10 on average over the last week. INTERVENTIONS: 4-week program of once-weekly 2-hour group classes, offered in-person and online. CMI group participants were taught mindfulness, mantra meditation, and guided imagery practices. Control group participants received education on topics related to health and function after SCI. OUTCOME MEASURES: Pain interference (primary outcome), pain cognitions, pain intensity/unpleasantness, depressive symptomology, perceived stress. RESULTS: Pain interference decreased to a greater extent in the control group at both Day 42 and Day 70, with a large effect size (d > 1.0). Several secondary outcome measures showed changes consistent with more favorable outcomes in the CMI group at both Day 42 and Day 70, with a large effect size d > 0.80, including worst pain intensity over the last week, depressive symptomology, belief in pain as a sign of harm and perceived control over pain. Perceived stress improved to a greater extent in the control group (d = 1.16 at Day 42, d = .20 at Day 70). CONCLUSION: CMI is feasible and acceptable to implement with people with SCI and chronic pain. Further study is warranted to assess potential benefits for pain-related outcomes.

Meeting Proceedings for SCI 2020: Launching a Decade of Disruption in Spinal Cord Injury Research.

The spinal cord injury (SCI) research community has experienced great advances in discovery research, technology development, and promising clinical interventions in the past decade. To build upon these advances and maximize the benefit to persons with SCI, the National Institutes of Health (NIH) hosted a conference February 12-13, 2019 titled "SCI 2020: Launching a Decade of Disruption in Spinal Cord Injury Research." The purpose of the conference was to bring together a broad range of stakeholders, including researchers, clinicians and healthcare professionals, persons with SCI, industry partners, regulators, and funding agency representatives to break down existing communication silos. Invited speakers were asked to summarize the state of the science, assess areas of technological and community readiness, and build collaborations that could change the trajectory of research and clinical options for people with SCI. In this report, we summarize the state of the science in each of five key domains and identify the gaps in the scientific literature that need to be addressed to move the field forward.

The Importance of Voluntary Behavior in Rehabilitation Treatment and Outcomes.

Most rehabilitation treatments are volitional in nature, meaning that they require the patient's active engagement and effort. Volitional treatments are particularly challenging to define in a standardized fashion, because the clinician is not in complete control of the patient's role in enacting these treatments. Current recommendations for describing treatments in research reports fail to distinguish between 2 fundamentally different aspects of treatment design: the selection of treatment ingredients to produce the desired functional change and the selection of ingredients that will ensure the patient's volitional performance. The Rehabilitation Treatment Specification System (RTSS) is a conceptual scheme for standardizing the way that rehabilitation treatments are defined by all disciplines across all areas of rehabilitation. The RTSS highlights the importance of volitional behavior in many treatment areas and provides specific guidance for how volitional treatments should be specified. In doing so, it suggests important crosscutting research questions about the nature of volitional behavior, factors that make it more or less likely to occur, and ingredients that are most effective in ensuring that patients perform desired treatment activities.

The Rehabilitation Treatment Specification System: Implications for Improvements in Research Design, Reporting, Replication, and Synthesis.

Despite significant advances in measuring the outcomes of rehabilitation interventions, little progress has been made in specifying the therapeutic ingredients and processes that cause measured changes in patient functioning. The general approach to better clarifying the process of treatment has been to develop reporting checklists and guidelines that increase the amount of detail reported. However, without a framework instructing researchers in how to describe their treatment protocols in a manner useful to or even interpretable by others, requests for more detail will fail to improve our understanding of the therapeutic process. In this article, we describe how the Rehabilitation Treatment Specification System (RTSS) provides a theoretical framework that can improve research intervention reporting and enable testing and refinement of a protocol's underlying treatment theories. The RTSS framework provides guidance for researchers to explicitly state their hypothesized active ingredients and targets of treatment as well as for how the individual ingredients in their doses directly affect the treatment targets. We explain how theory-based treatment specification has advantages over checklist approaches for intervention design, reporting, replication, and synthesis of evidence in rehabilitation research. A complex rehabilitation intervention is used as a concrete example of the differences between an RTSS-based specification and the Template for Intervention Description and Replication checklist. The RTSS's potential to advance the rehabilitation field can be empirically tested through efforts to use the framework with existing and newly developed treatment protocols.

A Theory-Driven System for the Specification of Rehabilitation Treatments.

The field of rehabilitation remains captive to the black-box problem: our inability to characterize treatments in a systematic fashion across diagnoses, settings, and disciplines, so as to identify and disseminate the active ingredients of those treatments. In this article, we describe the Rehabilitation Treatment Specification System (RTSS), by which any treatment employed in rehabilitation may be characterized, and ultimately classified according to shared properties, via the 3 elements of treatment theory: targets, ingredients, and (hypothesized) mechanisms of action. We discuss important concepts in the RTSS such as the distinction between treatments and treatment components, which consist of 1 target and its associated ingredients; and the distinction between targets, which are the direct effects of treatment, and aims, which are downstream or distal effects. The RTSS includes 3 groups of mutually exclusive treatment components: Organ Functions, Skills and Habits, and Representations. The last of these comprises not only thoughts and feelings, but also internal representations underlying volitional action; the RTSS addresses the concept of volition (effort) as a critical element for many rehabilitation treatments. We have developed an algorithm for treatment specification which is illustrated and described in brief. The RTSS stands to benefit the field in numerous ways by supplying a coherent, theory-based framework encompassing all rehabilitation treatments. Using a common framework, researchers will be able to test systematically the effects of specific ingredients on specific targets; and their work will be more readily replicated and translated into clinical practice.

Advancing Rehabilitation Practice Through Improved Specification of Interventions.

Rehabilitation clinicians strive to provide cost-effective, patient-centered care that optimizes outcomes. A barrier to this ideal is the lack of a universal system for describing, or specifying, rehabilitation interventions. Current methods of description vary across disciplines and settings, creating barriers to collaboration, and tend to focus mostly on functional deficits and anticipated outcomes, obscuring connections between clinician behaviors and changes in functioning. The Rehabilitation Treatment Specification System (RTSS) is the result of more than a decade of effort by a multidisciplinary group of rehabilitation clinicians and researchers to develop a theory-based framework to specify rehabilitation interventions. The RTSS describes interventions for treatment components, which consist of a target (functional change brought about as a direct result of treatment), ingredients (actions taken by clinicians to change the target), and a hypothesized mechanism of action, as stated in a treatment theory. The RTSS makes explicit the connections between functional change and clinician behavior, and recognizes the role of patient effort in treatment implementation. In so doing, the RTSS supports clinicians' efforts to work with their patients to set achievable goals, select appropriate treatments, adjust treatment plans as needed, encourage patient participation in the treatment process, communicate with team members, and translate research findings to clinical care. The RTSS may help both expert and novice clinicians articulate their clinical reasoning processes in ways that benefit treatment planning and clinical education, and may improve the design of clinical documentation systems, leading to more effective justification and reimbursement for services. Interested clinicians are invited to apply the RTSS in their local settings.

Group Therapy Use and Its Impact on the Outcomes of Inpatient Rehabilitation After Traumatic Brain Injury: Data From Traumatic Brain Injury-Practice Based Evidence Project.

OBJECTIVES: To describe the amount and content of group therapies provided during inpatient rehabilitation for traumatic brain injury (TBI), and to assess the relations of group therapy with patient, injury, and treatment factors and outcomes. DESIGN: Prospective observational cohort. SETTING: Inpatient rehabilitation. PARTICIPANTS: Consecutive admissions (N=2130) for initial TBI rehabilitation at 10 inpatient rehabilitation facilities (9 in the United States, 1 in Canada) from October 2008 to September 2011. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Proportion of sessions that were group therapy (≥2 patients were treated simultaneously by ≥1 clinician); proportion of patients receiving group therapy; type of activity performed and amount of time spent in group therapy, by discipline; rehabilitation length of stay; discharge location; and FIM cognitive and motor scores at discharge. RESULTS: Of the patients, 79% received at least 1 session of group therapy, with group therapy accounting for 13.7% of all therapy sessions and 15.8% of therapy hours. On average, patients spent 2.9h/wk in group therapy. The greatest proportion of treatment time in group format was in therapeutic recreation (25.6%), followed by speech therapy (16.2%), occupational therapy (10.4%), psychology (8.1%), and physical therapy (7.9%). Group therapy time and type of treatment activities varied among admission FIM cognitive subgroups and treatment sites. Several factors appear to be predictive of receiving group therapy, with the treatment site being a major influence. However, group therapy as a whole offered little explanation of differences in the outcomes studied. CONCLUSIONS: Group therapy is commonly used in TBI rehabilitation, to varying degrees among disciplines, sites, and cognitive impairment subgroups. Various therapeutic activities take place in group therapy, indicating its perceived value in addressing many domains of functioning. Variation in outcomes is not explained well by overall percentage of therapy time delivered in groups.

Development of a theory-driven rehabilitation treatment taxonomy: conceptual issues.

Many rehabilitation treatment interventions, unlike pharmacologic treatments, are not operationally defined, and the labels given to such treatments do not specify the active ingredients that produce the intended treatment effects. This, in turn, limits the ability to study and disseminate treatments, to communicate about them clearly, or to train new clinicians to administer them appropriately. We sought to begin the development of a system of classification of rehabilitation treatments and services that is based on their active ingredients. To do this, we reviewed a range of published descriptions of rehabilitation treatments and treatments that were familiar to the authors from their clinical and research experience. These treatment examples were used to develop preliminary rules for defining discrete treatments, identifying the area of function they directly treat, and identifying their active ingredients. These preliminary rules were then tested against additional treatment examples, and problems in their application were used to revise the rules in an iterative fashion. The following concepts, which emerged from this process, are defined and discussed in relation with the development of a rehabilitation treatment taxonomy: rehabilitation treatment taxonomy; treatment and enablement theory; recipient (of treatment); essential, active, and inactive ingredients; mechanism of action; targets and aims of treatment; session; progression; dosing parameters; and social and physical environment. It is hoped that articulation of the conceptual issues encountered during this project will be useful to others attempting to promote theory-based discussion of rehabilitation effects and that multidisciplinary discussion and research will further refine these rules and definitions to advance rehabilitation treatment classification.

Toward a theory-driven classification of rehabilitation treatments.

Rehabilitation is in need of an organized system or taxonomy for classifying treatments to aid in research, practice, training, and interdisciplinary communication. In this article, we describe a work-in-progress effort to create a rehabilitation treatment taxonomy (RTT) for classifying rehabilitation interventions by the underlying treatment theories that explain their effects. In the RTT, treatments are grouped together according to their targets, or measurable aspects of functioning they are intended to change; ingredients, or measurable clinician decisions and behaviors responsible for effecting changes; and the hypothesized mechanisms of action by which ingredients are transformed into changes in the target. Four treatment groupings are proposed: structural tissue properties, organ functions, skilled performances, and cognitive/affective representations, which are similar in the types of targets addressed, ingredients used, and mechanisms of action that account for change. The typical ingredients and examples of clinical treatments associated with each of these groupings are explored, and the challenges of further subdivision are discussed. Although a Linnaean hierarchical tree structure was envisioned at the outset of work on the RTT, further development may necessitate a model with less rigid boundaries between classification groups, and/or a matrix-like structure for organizing active ingredients along selected continua, to allow for both qualitative and quantitative variations of importance to treatment effects.

Describing what we do: a qualitative study of clinicians' perspectives on classifying rehabilitation interventions.

OBJECTIVE: To gain an understanding of clinical thought processes about treatment classification and description, and to identify desired characteristics of and challenges to be addressed by a future rehabilitation treatment taxonomy. DESIGN: Qualitative analysis of data collected via focus groups and semistructured interviews. SETTING: Inpatient rehabilitation programs. PARTICIPANTS: Clinicians (N=84) in 7 disciplines involved in data collection for practice-based evidence studies of spinal cord injury and traumatic brain injury rehabilitation. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Summary of themes reported by clinicians, determined by content analysis of focus group and interview transcripts. RESULTS: The multifaceted nature of rehabilitation treatment was identified as a major challenge to the process of classifying interventions. Simultaneous delivery of multiple interventions, performance of integrated tasks that challenge multiple body systems, and conversation-based treatments were reported to be difficult to classify. Clinicians reported that treatment classifications that make reference to goals of treatment were clinically intuitive, but they also reported difficulties when attempting to classify activities that could address multiple goals. These rehabilitation practitioners considered the setting in which treatment occurs, equipment used, assistance or cueing provided, type of treatment participants, and specific tasks performed to be important descriptors of their interventions. They recommended creating a classification system that can be applied at greater or lesser levels of detail depending on the purpose for which it is being used. CONCLUSIONS: Treatment descriptors identified may be useful for differentiating classes of treatments or characterizing treatments within classes. Precise definition of the concept of the goal as it relates to treatment theory and definition of boundaries between treatments may aid classification of multifaceted treatment activities. A balance between detail and feasibility of use will facilitate successful clinical application of a future classification system.

Treatment taxonomy for rehabilitation: past, present, and prospects.

The idea of constructing a taxonomy of rehabilitation interventions has been around for quite some time, but other than small and mostly ad hoc efforts, not much progress has been made, in spite of articulate pleas by some well-respected clinician scholars. In this article, treatment taxonomies used in health care, and in rehabilitation specifically, are selectively reviewed, with a focus on the need to base a rehabilitation treatment taxonomy (RTT) on the "active ingredients" of treatments and their link to patient/client deficits/problems that are targeted in therapy. This is followed by a description of what we see as a fruitful approach to the development of an RTT that crosses disciplines, settings, and patient diagnoses, and a discussion of the potential uses in and benefits of a well-developed RTT for clinical service, research, education, and service administration.