Developmental delay can precede neurologic regression in early onset metachromatic leukodystrophy.

OBJECTIVE: Metachromatic leukodystrophy (MLD) is a rare neurodegenerative disorder. Emerging therapies are most effective in the presymptomatic phase, and thus defining this window is critical. We hypothesize that early development delay may precede developmental plateau. With the advent of presymptomatic screening platforms and transformative therapies, it is essential to define the onset of neurologic disease. METHODS: The specific ages of gain and loss of developmental milestones were captured from the medical records of individuals affected by MLD. Milestone acquisition was characterized as: on target (obtained before the age limit of 90th percentile plus 2 standard deviations compared to a normative dataset), delayed (obtained after 90th percentile plus 2 standard deviations), or plateau (skills never gained). Regression was defined as the age at which skills were lost. LI-MLD was defined by age at onset before 2.5 years. RESULTS: Across an international cohort, 351 subjects were included (n = 194 LI-MLD subcohort). The median age at presentation of the LI-MLD cohort was 1.4 years (25th-75th %ile: 1.0-1.5). Within the LI-MLD cohort, 75/194 (39%) had developmental delay (or plateau) prior to MLD clinical presentation. Among the LI-MLD cohort with a minimum of 1.5 years of follow-up (n = 187), 73 (39.0%) subjects never attained independent ambulation. Within LI-MLD + delay subcohort, the median time between first missed milestone target to MLD decline was 0.60 years (maximum distance from delay to onset: 1.9 years). INTERPRETATION: Early developmental delay precedes regression in a subset of children affected by LI-MLD, defining the onset of neurologic dysfunction earlier than previously appreciated. The use of realworld data prior to diagnosis revealed an early deviation from typical development. Close monitoring for early developmental delay in presymptomatic individuals may help in earlier diagnosis with important consequences for treatment decisions.

Lentiviral haematopoietic stem-cell gene therapy for early-onset metachromatic leukodystrophy: long-term results from a non-randomised, open-label, phase 1/2 trial and expanded access.

BACKGROUND: Effective treatment for metachromatic leukodystrophy (MLD) remains a substantial unmet medical need. In this study we investigated the safety and efficacy of atidarsagene autotemcel (arsa-cel) in patients with MLD. METHODS: This study is an integrated analysis of results from a prospective, non-randomised, phase 1/2 clinical study and expanded-access frameworks. 29 paediatric patients with pre-symptomatic or early-symptomatic early-onset MLD with biochemical and molecular confirmation of diagnosis were treated with arsa-cel, a gene therapy containing an autologous haematopoietic stem and progenitor cell (HSPC) population transduced ex vivo with a lentiviral vector encoding human arylsulfatase A (ARSA) cDNA, and compared with an untreated natural history (NHx) cohort of 31 patients with early-onset MLD, matched by age and disease subtype. Patients were treated and followed up at Ospedale San Raffaele, Milan, Italy. The coprimary efficacy endpoints were an improvement of more than 10% in total gross motor function measure score at 2 years after treatment in treated patients compared with controls, and change from baseline of total peripheral blood mononuclear cell (PBMC) ARSA activity at 2 years after treatment compared with values before treatment. This phase 1/2 study is registered with ClinicalTrials.gov, NCT01560182. FINDINGS: At the time of analyses, 26 patients treated with arsa-cel were alive with median follow-up of 3·16 years (range 0·64-7·51). Two patients died due to disease progression and one due to a sudden event deemed unlikely to be related to treatment. After busulfan conditioning, all arsa-cel treated patients showed sustained multilineage engraftment of genetically modified HSPCs. ARSA activity in PBMCs was significantly increased above baseline 2 years after treatment by a mean 18·7-fold (95% CI 8·3-42·2; p<0·0001) in patients with the late-infantile variant and 5·7-fold (2·6-12·4; p<0·0001) in patients with the early-juvenile variant. Mean differences in total scores for gross motor function measure between treated patients and age-matched and disease subtype-matched NHx patients 2 years after treatment were significant for both patients with late-infantile MLD (66% [95% CI 48·9-82·3]) and early-juvenile MLD (42% [12·3-71·8]). Most treated patients progressively acquired motor skills within the predicted range of healthy children or had stabilised motor performance (maintaining the ability to walk). Further, most displayed normal cognitive development and prevention or delay of central and peripheral demyelination and brain atrophy throughout follow-up; treatment benefits were particularly apparent in patients treated before symptom onset. The infusion was well tolerated and there was no evidence of abnormal clonal proliferation or replication-competent lentivirus. All patients had at least one grade 3 or higher adverse event; most were related to conditioning or to background disease. The only adverse event related to arsa-cel was the transient development of anti-ARSA antibodies in four patients, which did not affect clinical outcomes. INTERPRETATION: Treatment with arsa-cel resulted in sustained, clinically relevant benefits in children with early-onset MLD by preserving cognitive function and motor development in most patients, and slowing demyelination and brain atrophy. FUNDING: Orchard Therapeutics, Fondazione Telethon, and GlaxoSmithKline.

Development and initial validation of the Respirator Comfort, Wearing Experience, and Function Instrument [R-COMFI].

Filtering face-piece respirators (FFRs) are worn to protect health care personnel from airborne particles; however, clinical studies have demonstrated that FFR adherence is relatively low in some settings, in part, due to discomfort and intolerance. The objective of this study was to develop and initially evaluate the psychometric properties of an instrument designed to measure the comfort and tolerability of FFRs. Instrument items were developed through literature reviews, focus groups, and several iterations of ranking and refining by experts. Psychometric evaluation of the instrument was conducted using Rasch partial credit model (PCM) analysis. Pivot anchoring was used to specify the threshold defining item difficulty; in our analyses, this was the point that participants moved from possessing none of the trait to some of the trait. The final instrument was completed by 165 health care personnel from 3 Veterans Health Administration facilities, and data were analyzed using Rasch PCM. Seven items were removed because they: (1) violated the assumption of independence; (2) were mis-fitting; and/or (3) were deemed not relevant. Category function analysis demonstrated that all categories progressed monotonically. Principal components analysis demonstrated the existence of three subscales (Discomfort, General Wearing Experience, and Function). Final reliability analyses showed that the scale had moderate to high person reliability and high item reliability. The final instrument contained 21 items. Until now, to our knowledge no instrument with evidence supporting its reliability and validity to assess discomfort and tolerance of FFRs among health care personnel has been published. A 21-item psychometrically sound measure of comfort and tolerability of FFRs, Respirator Comfort, Wearing Experience, and Function Instrument (R-COMFI), was developed. The significance of developing such an instrument is that it will help identify respirators that are likely to have better adherence in practice settings. The R-COMFI may be used within and beyond the VA healthcare system as a psychometrically sound instrument to evaluate the comfort and tolerability of respirators, including developmental prototypes.

Measuring Health-related Transportation Barriers in Urban Settings.

Access to reliable transportation is important for people with chronic diseases considering the need for frequent medical visits and for medications from the pharmacy. Understanding of the extent to which transportation barriers, including lack of transportation, contribute to poor health outcomes has been hindered by a lack of consistency in measuring or operationally defining "transportation barriers." The current study uses the Rasch measurement model to examine the psychometric properties of a new measure designed to capture types of transportation and associated barriers within an urban context. Two hundred forty-four adults with type 2 diabetes were recruited from within an academic medical center in Chicago and completed the newly developed transportation questions as part of a larger National Institutes of Health funded study (ClinicalTrials.gov identifier: NCT01498159). Results suggested a two subscale structure that reflected 1) general transportation barriers and 2) public transportation barriers.

Perceptions of Person-Centered Care Following Spinal Cord Injury.

OBJECTIVES: To (1) evaluate perceptions of person-centered care (PCC) in individuals with traumatic spinal cord injury (SCI); and (2) examine perceived differences in PCC concepts between patients continuing to receive any services from a Spinal Cord Injury Model Systems (SCIMS) facility and those who are not. DESIGN: We used a cross-sectional design, mailed a paper survey, and followed up with a second mailing to nonrespondents after 4 weeks. SETTING: Community. PARTICIPANTS: Individuals (N=326) who received initial rehabilitation at an SCIMS facility and agreed to participate in this research study. We distinguished respondents who received any SCIMS outpatient services in the past 2 years (SCIMS users, n=137) or longer ago (SCIMS nonusers, n=189). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed the Patient Activation Measure (PAM), the Patient Assessment of Chronic Illness Care, the Global Practice Experience measure, and 5 Press-Ganey questions that assessed key elements of patient- and family-centered care. RESULTS: Patient perspectives of chronic illness care were more positive in the SCIMS users than nonusers (3.15 vs 2.91, P<.05); the difference is attributable primarily to higher subscale scores on goal setting and tailoring. The SCIMS users and nonusers did not differ in terms of PAM overall score or activation stage, Global Practice Experience, or Press-Ganey scores. CONCLUSIONS: SCIMS users and nonusers differed on perceptions of chronic illness care (largely the goal-setting and tailoring component), which were more favorable for Model System users than nonusers. Results can guide strategies to enhance PCC practices after inpatient rehabilitation.

Through Their Eyes: Lessons Learned Using Participatory Methods in Health Care Quality Improvement Projects.

In this methodological article, we examine participatory methods in depth to demonstrate how these methods can be adopted for quality improvement (QI) projects in health care. We draw on existing literature and our QI initiatives in the Department of Veterans Affairs to discuss the application of photovoice and guided tours in QI efforts. We highlight lessons learned and several benefits of using participatory methods in this area. Using participatory methods, evaluators can engage patients, providers, and other stakeholders as partners to enhance care. Participant involvement helps yield actionable data that can be translated into improved care practices. Use of these methods also helps generate key insights to inform improvements that truly resonate with stakeholders. Using participatory methods is a valuable strategy to harness participant engagement and drive improvements that address individual needs. In applying these innovative methodologies, evaluators can transcend traditional approaches to uniquely support evaluations and improvements in health care.

How do patients respond when confronted with telephone access barriers to care?

OBJECTIVE: To gain an in-depth understanding of patient barriers to accessing telephone care, subsequent responses to telephone access issues and recommendations for system improvement within a large integrated health-care system. STUDY DESIGN: Cross-sectional qualitative focus group study. METHODS: One focus group was conducted at each of 17 Veterans Affairs facilities with a total of 123 Veteran users of VA health care. All facilities followed a focus group discussion guide, and purposively sampled patients receiving care at their VA facility in primary and/or specialty care. Focus groups' recordings were sent to the authors' independent evaluation centre, transcribed verbatim and analysed using qualitative content analysis methodology. RESULTS: Participants described many issues with the phone system that resulted in delays to care needs being addressed, including difficulty getting someone to answer the phone, out-dated phone directories, frequent disconnections and incorrect transfers. Participants most frequently responded to access issues by doing nothing or waiting to contact at a later time, or seeking unscheduled in-person care in the emergency department or primary care clinic. Participants offered recommendations for improving telephone care, including access to direct extensions, and upgrades to the telephone system. CONCLUSIONS: Telephone access issues could result in increased patient harm and/or increased wait times for in-person primary care or emergency services. Periodic evaluation of telephone systems is necessary to ensure telephone systems adequately meet patient needs while using resources efficiently to optimize the delivery of high quality, safe health care.

Professional Quality of Life of Veterans Affairs Staff and Providers in a Patient-Centered Care Environment.

Changes to the work environment prompted by the movement toward patient-centered care have the potential to improve occupational stress among health care workers by improving team-based work activities, collaboration, and employee-driven quality improvement. This study was conducted to examine professional quality of life among providers at patient-centered care pilot facilities. Surveys were conducted with 76 Veterans Affairs employees/providers at facilities piloting patient-centered care interventions, to assess demographics, workplace practices and views (team-based environment, employee voice, quality of communication, and turnover intention), and professional quality of life (compassion satisfaction, burnout, and secondary traumatic stress).Professional quality-of-life subscales were not related to employee position type, age, or gender. Employee voice measures were related to lower burnout and higher compassion satisfaction. In addition, employees who were considering leaving their position showed higher burnout and lower compassion satisfaction scores. None of the work practices showed relationships with secondary traumatic stress.

Individual, facility, and program factors affecting retention in a national weight management program.

BACKGROUND: High attrition is a common problem for weight loss programs and directly affects program effectiveness. Since 2006, the Veterans Health Administration (VHA) has offered obesity treatment to its beneficiaries through the MOVE! Weight Management Program for Veterans (MOVE!). An early evaluation of this program showed that attrition rate was high. The present study examines how individual, facility, and program factors relate to retention for participants in the on-site MOVE! group program. METHODS: Data for all visits to MOVE! group treatment sessions were extracted from the VHA outpatient database. Participants were classified into three groups by their frequency of visits to the group program during a six month period after enrollment: early dropouts (1 - 3 visits), late dropouts (4 - 5 visits), and completers (6 or more visits). A generalized ordered logit model was used to examine individual, facility, and program factors associated with retention. RESULTS: More than 60% of participants were early dropouts and 11% were late dropouts. Factors associated with retention were older age, presence of one or more comorbidities, higher body mass index at baseline, lack of co-payment requirement, geographic proximity to VA facility, addition of individual consultation to group treatment, greater program staffing, and regular, on-site physical activity programming. A non-completion rate of 74% for on-site group obesity treatment poses a major challenge to reducing the population prevalence of obesity within the VHA. CONCLUSIONS: Greater attention to individualized consultation, accessibility to the program, and facility factors including staffing and physical activity resources may improve retention.

Health care provider practices, barriers, and facilitators for weight management for individuals with spinal cord injuries and disorders.

BACKGROUND: Even though weight management is essential for the health of individuals with spinal cord injuries and disorders (SCI/D), little is known about current practices, barriers, and facilitators. OBJECTIVE: To describe weight management delivery in the Veterans Affairs (VA) SCI/D System of Care, including barriers and facilitators experienced by health care providers. METHODS: Qualitative focus groups were conducted in person at 4 geographically dispersed VA medical facilities delivering care to Veterans with SCI/D. Thirty-two employees involved in weight management efforts participated. Audio-recordings were transcribed and analyzed using qualitative content analysis techniques. RESULTS: Participants at SCI centers reported that weight management treatment was delivered through the center by a multidisciplinary team using education (eg, written materials) and counseling/consults. Participants at SCI spoke facilities generally depended on facility-level programs (eg, MOVE!) to deliver treatment. Spoke facilities discussed barriers to delivering treatment through their SCI team, including staff shortages and resource and structural issues. MOVE! staff discussed barriers, including limited wheelchair space in classrooms. Staff participants across facilities noted that Veterans with SCI/D were hesitant to use facility-level programs, because of nonspecific SCI-relevant information and discomfort attending sessions with general Veterans. Other barriers, for both centers and spoke facilities, included necessary medications that increase weight, lack of evidence-based guidelines for weight management, safety concerns, and facility layout/accessibility. Facilitators included facility leadership support, provider involvement/prioritization, and community resources. CONCLUSIONS: Weight management programs delivered through the SCI team, with peers and SCI-relevant content, are likely more acceptable and beneficial to individuals with SCI/D. Program classrooms should provide ample space for individuals with SCI/D.

Improving the quality of telephone-delivered health care: a national quality improvement transformation initiative.

BACKGROUND: Many Veterans Affairs (VA) primary care (PC) patients prefer telephone-delivered care to other health care delivery modalities. OBJECTIVE: To evaluate PC patients' telephone experiences and outcomes before and after a national telephone transformation quality improvement (QI) collaborative. METHODS: Cross-sectional surveys were conducted pre- and post-collaborative. We used bivariate analyses to assess differences in pre/post outcomes and multivariate regression to identify variables associated with patients' perceptions of poor quality care. RESULTS: Patients from 13 VA facilities participated (n = 730; pre-intervention = 314, post-intervention = 416); most of them were males (90%) with a mean age of 62 years. After the collaborative (versus pre-collaborative), few experienced transfers (52% versus 62%, P = 0.0006) and most reported timely call answer (88% versus 80%, P = 0.003). Improvements in staff understanding why patients were calling and providing needed medical information were also found. There were measurable improvements in patient satisfaction (87% versus 82% very/mostly satisfied, P = 0.04) and perceived quality of telephone care (85% versus 78% excellent/good quality, P = 0.01) post- collaborative. The proportion of veterans who reported delayed care due to telephone access issues decreased from 41% to 15% after the collaborative, P < 0.0001. Perceptions of poor quality care were higher when calls were for urgent care needs did not result in receipt of needed information and included a transfer or untimely answer. CONCLUSIONS: The QI collaborative led to improvements in timeliness of answering calls, patient satisfaction and perceptions of high-quality telephone care and fewer reports of health care delays. Barriers to optimal telephone care 'quality' include untimely answer, transfers, non-receipt of needed information and urgent care needs.

Influenza infection control guidance provided to staff at Veterans Affairs facilities for veterans with spinal cord injury during a pandemic(†).

CONTEXT/OBJECTIVE: To assess guidance provided to staff at Veterans Affairs (VA) healthcare facilities on H1N1 influenza infection control for veterans with spinal cord injuries and disorders (SCI/D). STUDY DESIGN: Cross-sectional qualitative semi-structured interviews. SETTING: Thirty-three VA healthcare facilities from throughout the United States that provide care to veterans with SCI/D. PARTICIPANTS: Thirty-three infection control key informants, each representing a VA healthcare facility. INTERVENTIONS: None. OUTCOME MEASURES: Infection control practices, including vaccination practices, hospital preparedness, and recommendations for future pandemics, both in general and specifically to SCI/D. RESULTS: Most (n = 26, 78.8%) infection control key informants believed veterans with SCI/D were at increased risk for influenza and complications, but only 17 (51.5%) said veterans with SCI/D were treated as a priority group for vaccination at their facilities. There was little special guidance provided for treating veterans with SCI/D, and most (n = 28, 84.8%) informants said that infection control procedures and recommendations were applied universally. Yet, 10 key informants discussed 'unique challenges' to infection control in the SCI/D population. Informants discussed the potential for infectious agents to be spread through shared and common use equipment and the necessity of including caregivers in any vaccination or educational campaigns. CONCLUSION: Greater input by experts knowledgeable about SCI/D is recommended to adequately address pandemic influenza within healthcare facilities where individuals with SCI/D receive care.

Participant Retention in the Veterans Health Administration's MOVE! Weight management program, 2010.

INTRODUCTION: Participant retention is a frequent concern in structured weight-management programs. Although research has explored participant characteristics influencing retention, little attention has been given to the influence of program characteristics. The objective of this study was to examine how program characteristics relate to participant retention in the Veterans Health Administration's weight-management program, MOVE! METHODS: We conducted semistructured interviews with coordinators of 12 MOVE! programs located throughout the United States, 5 with high participant retention rates and 7 with low rates. We transcribed and descriptively coded interviews and compared responses from high- and low-retention programs. RESULTS: Characteristics related to retention were provider knowledge of and referral to the program, reputation of the program within the medical facility, the MOVE! meeting schedule, inclusion of physical activity in group meetings, and involvement of the MOVE! physician champion. MOVE! introductory sessions, frequency of group meetings, and meeting topics were not related to retention. Coordinators described efforts to improve retention, including participant contracts and team competitions. Coordinators at 5 high-retention facilities and 1 low-retention facility discussed efforts to improve retention. CONCLUSION: Coordinators identified important program characteristics that could guide improvements to retention in group-based weight-management programs. Training for providers is needed to assist with referral decisions, and program planners should consider incorporating physical activity in group meetings.

Examining the relationship between post-traumatic stress disorder and social participation among Veterans with spinal cord injuries and disorders.

PURPOSE: The objectives of this study were to examine differences in social participation among Veterans with spinal cord injuries/disorders with and without post-traumatic stress disorder, and determine if lower social participation was independently associated with having post-traumatic stress disorder. METHODS: A cross-sectional mailed national survey was sent to a national sample of Veterans with spinal cord injuries/disorders who received prior-year Veterans Affairs healthcare. Surveys provided data on: demographics, health conditions, injury characteristics, and social participation. Analyses included bivariate comparisons, and multivariate logistic regression to determine if lower social participation was independently associated with post-traumatic stress disorder. RESULTS: Veterans with (vs. without) post-traumatic stress disorder (n = 896) reported lower social participation (40.2 vs. 43.9, p < 0.0001). Multivariate analyses showed that longer duration of injury (OR = 0.98, 95% CI: 0.97-1.00, p = 0.04) and white race (OR = 0.62, 95% CI: 0.38-1.01, p = 0.05) were associated with lower odds of post-traumatic stress disorder, while a greater number of health conditions (OR = 1.43, 95% CI: 1.25-1.64, p < 0.0001) was associated with greater odds. When controlling for covariates, lower social participation was independently associated with post-traumatic stress disorder (OR = 0.94, 95% CI: 0.90-0.98, p = 0.003). CONCLUSIONS: Results indicate post-traumatic stress disorder is associated with lower social participation in Veterans with spinal cord injuries/disorders, independent of other factors that may impact participation. Efforts to screen for and treat post-traumatic stress disorder among persons with spinal cord injuries/disorders, regardless of injury-specific factors, are needed to improve participation. Implications for Rehabilitation Individuals with spinal cord injuries/disorders often have post-traumatic stress disorder; in Veterans with spinal cord injuries/disorders this may be compounded by trauma incurred through military experiences. Social participation, an important aspect of rehabilitation and community integration following spinal cord injury or disorder, may be hindered by symptoms of post-traumatic stress disorder. Our data show that post-traumatic stress disorder is associated with lower social participation in Veterans with spinal cord injuries/disorders, independent of other factors that may impact participation. These results indicate that efforts to screen for and treat post-traumatic stress disorder among persons with spinal cord injuries/disorders, regardless of injury-specific factors, are needed to improve participation in this patient population.

Evaluating broad-scale system change using the Consolidated Framework for Implementation Research: challenges and strategies to overcome them.

OBJECTIVE: The objective of this paper is to demonstrate the utility of the CFIR framework for evaluating broad-scale change by discussing the challenges to be addressed when planning the assessment of broad-scale change and the solutions developed by the evaluation team to address those challenges. The evaluation of implementation of Patient-centered Care and Cultural Transformation (PCC&CT) within the Department of Veterans Affairs (VA) will be used as a demonstrative example. Patient-Centered Care (PCC) is personalized health care that considers a patient's circumstances and goals. The Department of Veterans Affairs (VA) is working towards implementing PCC throughout its healthcare system, comprised of multiple interventions with a singular long-term goal of cultural transformation, however little is known about the factors influencing its implementation. This paper discusses the issues that arose using CFIR to qualitatively assess the factors influencing implementation of cultural transformation. RESULTS: Application of CFIR to this broad-scale evaluation revealed three strategies recommended for use in evaluating implementation of broad-scale change: (1) the need for adapted definitions for CFIR constructs (especially due to new application to broad-scale change), (2) the use of a mixed deductive-inductive approach with thematic coding to capture emergent themes not encompassed by CFIR, and (3) its use for expedited analysis and synthesis for rapid delivery of findings to operational partners. This paper is among the first to describe use of CFIR to guide the evaluation of a broad-scale transformation, as opposed to discrete interventions. The processes and strategies described in this paper provide a detailed example and structured approach that can be utilized and expanded upon by others evaluating implementation of broad-scale evaluations. Although CFIR was the framework selected for this evaluation, the strategies described in this paper including: use of adapted definitions, use of mixed deductive-inductive approach, and the approach for expedited analysis and synthesis can be transferred and tested with other frameworks.

Patient perceptions of environmental control units: experiences of Veterans with spinal cord injuries and disorders receiving inpatient VA healthcare.

PURPOSE: To assess patients' perceptions of environmental control units (ECUs) at Veterans Affairs Spinal Cord Injury Centers. MATERIALS AND METHODS: A brief questionnaire was conducted with patients in real-time while they were hospitalised ("on-the-spot questionnaire"); a survey was mailed to patients who had recently been discharged from a hospital stay ("discharge survey"). Data were analysed using descriptive statistics. RESULTS: Seventy on-the-spot questionnaires and 80 discharge surveys were collected. ECU features used most frequently were comparable in responses from both surveys: watching TV/movies (81%, 85%), calling the nurse (68%, 61%), turning lights on/off (63%, 52%), adjusting the bed (53%, 33%), and playing games (39%, 24%). Many on-the-spot questionnaire respondents felt the ECU met their need for independence a great deal (42%). Most respondents to both surveys were satisfied with the ECU (71%, 57%). Areas for improvement included user training, improved functionality of the device and its features, and device design. CONCLUSIONS: ECUs were well-accepted by persons with spinal cord injuries/disorders (SCI/D) in the inpatient setting, and increased patients' perceptions of independence. To maximise usability and satisfaction, facilities should ensure that comprehensive training on ECU use and features available is offered to all patients, and resources are available for timely troubleshooting and maintenance. Implications for rehabilitation An environmental control unit (ECU) is a form of assistive technology that allows individuals with disabilities (such as spinal cord injuries and disorders [SCI/D]) to control functional and entertainment-related aspects of their environment. ECU use can increase functioning, independence and psychosocial well-being among individuals with SCI/D, by allowing users to reclaim control over day-to-day activities that are otherwise limited by their disability. Our study results indicate that, among persons with SCI/D, ECUs are well-accepted and increase perceptions of independence. To maximise usability and patient satisfaction, facilities should ensure that comprehensive training on how to use ECUs and what features are available is offered to all patients, and resources are available for timely troubleshooting and maintenance.

Effect of the environment on participation in spinal cord injuries/disorders: The mediating impact of resilience, grief, and self-efficacy.

OBJECTIVE: The objective of the study was to test the hypothesis that the influence of environmental barriers on participation will be fully mediated by psychosocial factors (resilience, grief or loss, and self-efficacy) among individuals with spinal cord injuries and disorders. METHOD: This was a cross-sectional mailed survey with a national sample of veterans with spinal cord injuries and disorders (n = 565), which included measures of demographics, perceived environmental barriers, participation, resilience, grief or loss, and self-efficacy. Data were analyzed using a latent variable path analysis; the model fit was assessed using χ2, normed χ2, root mean square error of approximation (RMSEA; <0.07), Comparative Fit Index (CFI; ≥0.95), and Tucker-Lewis Index (TLI; ≥0.95). RESULTS: Participants were mostly male (93.9%), Caucasian or White (74.2%), and, on average, 62.4 years of age (SD = 10.48). Almost 62% had paraplegia, and 38.3% had a motor or sensory complete injury. The hypothesized model showed excellent fit, χ2(42) = 153.40, normed χ2 = 3.65, RMSEA = 0.07, CFI = 0.96, TLI = 0.95. To assess for full mediation, a direct path was added from environment to participation. This model showed nearly identical fit, χ2(41) = 153.39, normed χ2 = 3.74, RMSEA = 0.07, CFI = 0.96, TLI = 0.95; the path from environment to participation was not significant, unstandardized coefficient = -0.04, p = .92. Examination of indirect effects of the hypothesized model demonstrated that environment significantly influences participation through psychosocial factors, unstandardized coefficient = -4.85, p < .001. Together these results support full mediation. CONCLUSIONS: In conclusion the present study expands upon past research by suggesting that perceived environmental barriers play a role in internal factors, such as resilience and self-efficacy, which in turn influence participation. Interventions to improve environmental barriers may be warranted, but attention must also be paid to resilience, grief or loss, and self-efficacy to increase participation. (PsycINFO Database Record

Relational empathy and holistic care in persons with spinal cord injuries.

OBJECTIVE: Describe perceptions of persons with SCI on their receipt of holistic care and relational empathy during health care encounters. DESIGN: Mailed survey. PARTICIPANTS/SETTING: Individuals with SCI who received care from the largest suppliers of SCI care and rehabilitation (Veterans Health Administration and SCI Model Systems). OUTCOME MEASURES: Using a survey and administrative databases, we collected demographic and injury characteristics, health status, health conditions, and the main outcome: Consultation and Relational Empathy (CARE) measure. RESULTS: The sample included 450 individuals with SCI (124 Veterans and 326 civilians). Response rate was 39% (450/1160). Analyses were conducted on patients with complete data (n = 389). Veterans and civilians with SCI differed across many demographic characteristics, age at injury, and etiology, but mean CARE scores were equivalent. Fewer than half of the full SCI cohort had CARE scores above the normative value of 43. Having a recent pressure ulcer showed a trend for lower odds of having a normative or higher CARE score. Odds of having an above-normative CARE score were nearly 2 times greater for individuals with tetraplegia, and odds were higher for those with higher physical and mental health status. CONCLUSIONS: Higher physical and mental health status and tetraplegia were each independently associated with greater perceptions of holistic care and empathy in the therapeutic patient-provider relationship. Limited empathy, communication, and holistic care may arise when providers focus on disease/disease management, rather than on patients as individuals. Frequent health care use and secondary conditions may affect empathy and holistic care in encounters, making it essential to understand and employ efforts to improve the therapeutic relationship between patients with SCI and their providers.

Perceptions of Shared Decision Making Among Patients with Spinal Cord Injuries/Disorders.

Background: Individuals with spinal cord injuries/disorders (SCI/D) are interested in, and benefit from, shared decision making (SDM). Objective: To explore SDM among individuals with SCI/D and how demographics and health and SCI/D characteristics are related to SDM. Method: Individuals with SCI/D who were at least 1 year post injury, resided in the Chicago metropolitan area, and received SCI care at a Veterans Affairs (VA; n = 124) or an SCI Model Systems facility (n = 326) completed a mailed survey measuring demographics, health and SCI/D characteristics, physical and mental health status, and perceptions of care, including SDM, using the Combined Outcome Measure for Risk Communication and Treatment Decision-Making Effectiveness (COMRADE) that assesses decision-making effectiveness (effectiveness) and risk communication (communication). Bivariate analyses and multiple linear regression were used to identify variables associated with SDM. Results: Participants were mostly male (83%) and White (70%) and were an average age of 54 years (SD = 14.3). Most had traumatic etiology, 44% paraplegia, and 49% complete injury. Veteran/civilian status and demographics were unrelated to scores. Bivariate analyses showed that individuals with tetraplegia had better effectiveness scores than those with paraplegia. Better effectiveness was correlated with better physical and mental health; better communication was correlated with better mental health. Multiple linear regressions showed that tetraplegia, better physical health, and better mental health were associated with better effectiveness, and better mental health was associated with better communication. Conclusion: SCI/D and health characteristics were the only variables associated with SDM. Interventions to increase engagement in SDM and provider attention to SDM may be beneficial, especially for individuals with paraplegia or in poorer physical and mental health.

Health Information Seeking and Technology Use Among Veterans With Spinal Cord Injuries and Disorders.

BACKGROUND: Access to health information is crucial to persons living with a spinal cord injury or disorder (SCI/D). Although previous research has provided insights on computer and Internet use among persons with SCI/D, as well as how and where persons with SCI/D gather health information, few studies have focused on U.S. veterans with SCI/D. OBJECTIVE: To characterize health information seeking among veterans with SCI/D and to examine the association between technology use and the characteristics of veterans with SCI/D. DESIGN: Cross-sectional. SETTING: Veterans Health Administration (VHA). PARTICIPANTS: Sample of 290 veterans with SCI/D who utilize services at 2 VHA SCI/D Centers. METHODS: Postal mail survey. MAIN OUTCOME MEASUREMENTS: Extent of computer, Internet, and text messaging use, information source use, and e-Health literacy rates. RESULTS: The survey response rate was 38%. The majority of respondents were male (97.2%), younger than 65 years (71.0%), and white (71.7%). Of the respondents, 64.8% indicated that they use a computer, 62.9% reported use of the Internet, and 26.2% reported use of text messaging. The mean overall e-Health Literacy Scale score was 27.3 (standard deviation = 7.2). Similar to findings reported in studies focused outside the veteran population, the most frequent source that veterans turned to for information about SCI/D was a health professional (85.1%); this was also the most frequent source that veterans indicated they would turn to first to get information about SCI/D (75.9%). Other frequently reported sources of information included other persons with SCI/D (41.0%), Internet resources (31.0%), and family and friends (27.9%). CONCLUSIONS: Fairly high levels of computer and Internet use exist among veterans with SCI/D. Veterans with SCI/D also have a strong preference for people-particularly health professionals, and to a lesser extent peers and family and friends-as sources of information about SCI/D. These findings highlight the importance of combining technology and human interaction to meet the information needs of this population.