Predictive factors and quality of life assessment among patients with spinal cord injury in the Middle East: a systematic review.

PURPOSE: Spinal cord injury (SCI) is impairment of the spinal cord that adversely affects patients' health and quality of life (QoL). The aim of the study was to assess the quality of life (QoL) and related factors in patients with traumatic spinal cord injury in Middle Eastern countries. METHODS: PubMed, Ovid Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), EBSCOhost, psycINFO, and Google Scholar were systematically searched for eligible studies published in peer-reviewed journals up till October 2023. RESULTS: Out of 1060 papers found in the literature, only 18 studies from Iran, Lebanon, and Turkey met the inclusion criteria. The majority of the studies employed the SF-36 scale to assess for QoL. In general, all SCI patients had reduced QoL scores when compared to the healthy population. Some of the factors such as age, education level, the level of injury, time since injury onset, marriage, and job opportunities were correlated with SCI subjects QoL. Our papers were assessed and found to be of both good and high quality. CONCLUSION: This review emphasizes the significant shortage of QoL studies among SCI patients in the Middle East countries and highlights the importance of improving the QoL of this marginalized population. This work should enhance the governments to establish rehabilitation centers, social and economic support systems, and mental health services to diminish complications arising from SCI.

Psychometric properties of the Danish version of the Caregiver Burden Scale: Investigating predictors and severity of burden after stroke, spinal cord injury, or traumatic brain injury.

OBJECTIVE: To investigate (i) psychometric properties of the Danish version of the Caregiver Burden Scale, (ii) predictors of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury, and (iii) severity of caregiver burden, and compare level of severity of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury. DESIGN: Cross-sectional study. PARTICIPANTS: Pooled sample of 122 caregivers. METHODS: Psychometric properties including internal consistency, floor and ceiling effects, inter-item and item-total correlation were investigated using the Caregiver Burden Scale. Severity of burden was compared using Fisher's exact test and ANOVA, and predictors of burden were investigated using multiple linear regression models. RESULTS: The total burden score exhibited good internal consistency (α = 0.93), with no floor or ceiling effects. Longer time as a caregiver was a significant predictor of higher total score. The majority (52.2%) reported a low level of caregiver burden (below cut-off of 2.00). Mean scores on the Caregiver Burden Scale were not significantly different among caregivers across diagnostic groups. Differences were found when comparing spinal cord injury caregivers with brain injury caregivers (traumatic brain injury and stroke, collectively), χ2(2) = 6.38, p = 0.04, as spinal cord injury caregivers were more likely to report low levels of burden. CONCLUSION: Good psychometric properties were reported, and most caregivers reported a low level of burden, and longer time as a caregiver was associated with higher burden. Consequently, the Caregiver Burden Scale is a valid measure to use when measuring burden in caregivers of stroke, spinal cord injury, and traumatic brain injury patients.

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.

BACKGROUND: Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research. METHODS: Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically. FINDINGS: Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.' CONCLUSION: People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

Patient Resiliency and Caregiver Burden After Traumatic Spinal Cord Injury Resulting in Quadriplegia.

Traumatic spinal cord injury (tSCI) resulting in quadriplegia is a life-altering injury for patients and caregivers. We conducted a retrospective review of patients treated for tSCI and quadriplegia at a level 1 trauma center to assess quality of life (QOL), socioeconomic factors, and mortality. Patients and caregivers were surveyed. Of the 65 patients included, 33 contacts were made. Seventeen surveys were completed (12 caregivers and 5 patients). Six unreachable patients were confirmed alive via medical record. Mortality rate among these 39 accessible patients was 23% (n = 9). Medicaid and uninsured patients experienced longer hospital length of stay (P < .0001) and discharged to home or nursing facilities (P < .0001) more often than those with private insurance or Medicare. Patients reported overall "good" QOL (80%) while caregivers reported overall decreased QOL markers. Our results reflect the resilience among this patient population, but also highlight the impact of this life-altering injury on the caregiver.

Effect of Tele-exercise to Promote Empowered Movement for Individuals With Spinal Cord Injury (TEEMS) Program on Physical Activity Determinants and Behavior: A Mixed Methods Assessment.

OBJECTIVE: To assess the effects of group tele-exercise participation on physical activity (PA) determinants and behavior as identified by social cognitive theory (SCT) in individuals with spinal cord injury (SCI). DESIGN: This clinically registered non-randomized trial [NCT05360719] used a single-group parallel mixed methods design. Quantitative and qualitative primary measures were assessed at pre-program and after 8-week intervention completion (post-program), with an additional 8-week period retention to capture quantitative assessments only. SETTING: Community. PARTICIPANTS: Individuals with chronic SCI (N=22, injury duration 2-50 years) aged 26-68 years (10 male/12 female). INTERVENTION: An 8-week group tele-exercise program for individuals with SCI consisting of biweekly 60-minute classes delivered via live Web-conferencing software. MAIN OUTCOME MEASURES: Exercise self-efficacy (Exercise Self-efficacy Scale for SCI: ESES), outcome expectations for exercise (Multidimensional Outcome Expectations for Exercise: MOEES), weekly PA minutes measured through quantitative assessments (Leisure Time PA Questionnaire for SCI: LTPAQ), and parallel qualitative thematic analysis of focus group interview transcripts. RESULTS: Congruence between numeric and thematic findings was present for exercise self-efficacy and self-evaluative exercise outcome expectations. Improved exercise self-efficacy was influenced by exercise knowledge gained during program participation. Increased expectations of internal exercise outcomes, such as influence on psychological state and overall mood, occurred after program participation. Participant descriptions of the portability and sustainability of the program leading to added movement in everyday life were not reflected in the numeric scores of LTPAQ assessment. CONCLUSIONS: Participation in an 8-week group tele-exercise program positively affected personal determinants of PA behavior immediately after participation. Future investigations should include a control group and biophysical PA measures such as wearable digital health devices.

Needs Assessment of Self-Management for Individuals With Chronic Spinal Cord Injury/Disease.

Since the 1980s, survivorship for persons with spinal cord injury/disease (SCI/D) has significantly improved; however, life expectancy remains lower than the general population due to secondary health conditions (SHCs) that lead to decreased function and death. This study explored (1) facilitators and barriers to engaging in self-management (SM) for persons with SCI/D and (2) stakeholder perspectives on potential SM program components and content for intervention development. Around 38 participants with SCI/D responded to this cross-sectional study and needs assessment conducted at the University of Missouri, Columbia. Responses were analyzed to determine descriptive statistics. Participants indicated barriers to SM include transportation/distance, presence of SHCs, and a lack of local resources. Participants noted that virtual SM programs with strong psychological health/coping components were preferred. These findings should guide the development of an SM program tailored to SCI/D to reduce the prevalence and impact of SHC on the SCI/D population.

Persons with Spinal Cord Injury/Disease (SCI/D) experience secondary health conditions to a higher degree than the general population which impacts their function, quality of life, and lifespan. The factors that limit or support participation in self-management behaviors and programs were explored and we asked people with SCI/D what they would want out of a self-management program tailored to their needs. Results showed that virtual programs with a both group and individual sessions with a strong mental health component were preferred.

Collaborative Care Versus Usual Care to Improve Quality of Life, Pain, Depression, and Physical Activity in Outpatients With Spinal Cord Injury: The SCI-CARE Randomized Controlled Clinical Trial.

Our goal was to test the effectiveness of collaborative care (CC) versus usual care (UC) to improve treatment of pain, depression, physical inactivity, and quality of life in outpatients with spinal cord injury (SCI). We conducted a single blind parallel group randomized controlled trial. The setting was two outpatient SCI rehabilitation clinics within a large academic medical center. Participants were 174 outpatients who were on average 47.7 years old, 76% male, 76% white, 8% Hispanic, 47% tetraplegic, 95% more than 1 year post-SCI, and 45% on Medicare. The intervention consisted of a mental health-trained collaborative care manager (CM) integrated into two SCI rehabilitation medicine clinics and supervised by content experts in pain and mental health treatment. The CM provided assessment, medical care coordination, adherence support, outcome monitoring, and decision support along with brief psychological interventions to the patients via up to 12 in-person or telephone sessions. Among all participants, 61% chose to focus on pain; 31% on physical activity and 8% on depression. The primary outcome was quality of life as measured by the World Health Organization Quality of Life-BREF at the end of treatment (4 months). Secondary outcomes were quality of life at 8 months and pain intensity and interference, depression severity, and minutes per week of moderate to vigorous physical activity at 4 and 8 months. A total of 174 participants were randomized 1:1 to CC (n = 89) versus UC (n = 85). The primary analysis, a mixed-effects linear regression adjusting for time since injury and sex, revealed a non-significant trend for greater improvement in quality of life in CC versus UC at 4 months (p = 0.083). Secondary analyses showed that those receiving CC reported significantly greater improvement in pain interference at 4- and 8-months and in depression at 4-months, but no significant effect on physical activity. We conclude that in an outpatient SCI care setting, CC is a promising model for delivering integrated medical and psychological care and improving management of common, chronic, disabling conditions such and pain and depression.

Effect of the Affordable Care Act on healthcare utilization for Veterans with spinal cord injuries and disorders.

Context/Objective: Provisions of the Affordable Care Act (ACA) potentially increase insurance options for Veterans with disabilities. We examined Veterans with spinal cord injuries and disorders (SCI/D) to assess whether the ACA was associated with changes in healthcare utilization from Department of Veterans Affairs (VA) healthcare facilities.Design: Using national VA data, we investigated impacts on VA healthcare utilization pre- (2012/13) and post-ACA (2014/15) implementation with negative binomial regression models.Setting: VA healthcare facilities.Participants: 8,591 VA users with SCI/D. Veterans with acute myelitis, Guillain-Barré syndrome, multiple sclerosis, or amyotrophic lateral sclerosis were excluded as were patients who died during the study period.Interventions: We assessed VA healthcare utilization before and after ACA implementation.Outcome Measures: Total numbers of VA visits for SCI/D care, diagnostic care, primary care, specialty care, and mental health care, and VA admissions.Results: The number of VA admissions was 7% higher in the post than pre-ACA implementation period (P < 0.01). The number of VA visits post-implementation increased for SCI/D care (8%; P < 0.01) and specialty care (12%; P < 0.001). Conversely, the number of mental health visits was 17% lower in the post-ACA period (P < 0.001). Veterans with SCI/D who live <5 miles from their nearest VA facility received VA care more frequently than those ≥40 miles from VA (P < 0.001).Conclusion: Counter to expectations, results suggest that Veterans with SCI/D sought more frequent VA care after ACA implementation, indicating Veterans with SCI/D continue to utilize the lifelong, comprehensive care provided at VA.

Development and validation of the Standing Balance Assessment for Individuals with Spinal Cord Injury (SBASCI) - A new outcome measure.

BACKGROUND: Injury to the spinal cord results in standing balance impairment following variable sensorimotor loss. Standing balance training is a realistic goal for the majority of individuals with spinal cord injury (SCI) for which therapists need valid measures to assess standing ability in people with SCI that are relevant to functionality. OBJECTIVE: The objective of the study was to develop an all inclusive Standing Balance Assessment for Individuals with Spinal Cord Injury (SBASCI) measure and to establish its initial psychometric properties. METHODS: The study was carried out in three phases: Item development, scale development and scale evaluation. Literature review, focus group discussions and evaluation by experts resulted in the development of a 22-item SBASCI scale. The scale was administered on 120 participants with SCI. Exploratory factor analysis and item analysis were used to determine construct validity and internal consistency of the scale. RESULTS: Content validity was established qualitatively and quantitatively. The scale shows high internal consistency reliability (Cronbach's alpha 0.96). The results of the exploratory factor analysis suggested a four factor structure retaining all the 22 items. CONCLUSION: SBASCI is a valid and reliable scale to measure the standing balance of individuals with SCI. Further studies are required to establish other psychometric properties.

Digital Phenotyping to Quantify Psychosocial Well-Being Trajectories After Spinal Cord Injury.

OBJECTIVE: The aim of the study was to explore feasibility of smartphone-based digital phenotyping methods to examine depression and its relation to psychosocial well-being indicators after spinal cord injury. DESIGN: Smartphone research platform obtained smartphone sensor and survey data among community-living adult wheelchair users with spinal cord injury. Weekly measurements for 4 mos included Patient Health Questionnaire 8, Spinal Cord Injury-Quality of Life Satisfaction with and ability to participate in social roles and activities, global positioning system-derived community mobility metrics, health conditions, and physical activity. RESULTS: Forty-three individuals were enrolled. Study retention was higher among individuals offered financial incentives (78%) compared with participants enrolled before incentives (50%). Participants who dropped out more commonly had nontraumatic or acute spinal cord injury, were older, and had less satisfaction and lower participation in social roles and activities. Among 15 individuals with complete data, half had 1 wk or more of mild depression. Those with depression had frequent health issues, less satisfaction, and lower participation in social roles and activities. Those without depression experienced increased social engagement over time. Average community mobility was similar across depression groups. Relationships were typically in-phase but also varied by individual. CONCLUSIONS: Smartphone-based digital phenotyping of psychosocial well-being after spinal cord injury is feasible but not without attrition challenges. Individual differences in depression patterns highlight clinical utility of scaling these methods.

Quality of Life and the Health System: A 22-Country Comparison of the Situation of People With Spinal Cord Injury.

OBJECTIVE: To analyze and compare how performance of the health system are linked to the self-reported quality of life (QOL) of people with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord (InSCI) community survey. DESIGN: Cross-sectional survey. SETTING: Twenty-two countries representing all 6 World Health Organization regions, community setting. PARTICIPANTS: Persons (N=12,591) with traumatic or nontraumatic SCI aged ≥18 years. INTERVENTIONS: Not applicable. MAIN OUTCOMES: Self-reported satisfaction on several indicators that include: health, ability to perform daily activities, oneself, personal relationships, and living conditions. A total score of QOL was calculated using these 5 definitions. RESULTS: The most important indicators for self-reported QOL of persons with SCI were social attitudes and access to health care services, followed by nursing care, access to public spaces, the provision of vocational rehabilitation, transportation, medication, and assistive devices. In general, persons with SCI living in higher-income countries reported a higher QOL than people in lower-income countries, with some exceptions. The top performing country was The Netherlands with an estimated median QOL of 66% (on a 0%-100% scale). CONCLUSIONS: The living situation of people with SCI is highly influenced by the performance of the health system. Measuring and comparing health systems give accountability to a country's citizens, but it also helps to determine areas for improvement.

Psychological Morbidity and Chronic Disease Among Adults With Traumatic Spinal Cord Injuries: A Longitudinal Cohort Study of Privately Insured Beneficiaries.

OBJECTIVE: To compare the longitudinal incidence of psychological morbidities and multimorbidity and estimates of chronic diseases among adults with spinal cord injuries (SCIs) as compared with adults without SCIs. METHODS: Privately insured beneficiaries who had medical coverage at any time between January 1, 2001, and December 31, 2017 were included if they had an International Classification of Diseases, Ninth Revision, Clinical Modification diagnostic code for a traumatic SCI (n=6,847). RESULTS: Adults with SCIs (n=6847) had a higher incidence of adjustment reaction (7.2% [n=493] vs 5.0% [n=42,862]), anxiety disorders (19.3% [n=1,322] vs 14.1% [n=120,872]), depressive disorders (29.3% [n=2,006] vs 9.3% [n=79,724]), alcohol dependence (2.4% [n=164] vs 1.0% [n=8,573]), drug dependence (2.3% [n=158] vs 0.8% [n=6,858]), psychogenic pain (1.0% [n=69] vs 0.2% [n=1,715]), dementia (6.5% [n=445] vs 1.5% [n=12,859]), insomnia (10.9% [n=746] vs 7.2% [n=61,722]), and psychological multimorbidity (37.4% [n=2,561] vs 23.9% [n=204,882]) as compared with adults without SCIs (n=857,245). The adjusted hazard ratios (HRs) of each psychological outcome were significantly higher for individuals with SCI and ranged from 1.18 (95% CI, 1.08-1.29) for anxiety disorders to 3.32 (95% CI, 1.93-5.71) for psychogenic pain. Adults with SCIs also had a significantly higher prevalence of all chronic diseases and chronic disease multimorbidity (51.1% vs 14.1%), except human immunodeficiency virus infection/AIDS. After propensity matching for age, education, race, sex, and chronic diseases (n=5884 matched pairs), there was still a significantly higher incidence of most psychological disorders and psychological multimorbidity among adults with SCIs. CONCLUSION: Adults with traumatic SCIs experienced an increased incidence of psychological morbidities and multimorbidity as compared with adults without SCIs. Clinical efforts are needed to improve mental health screening and targeted interventions to reduce the risk for psychological disease onset in the traumatic SCI population.

Factors influencing depression in individuals with traumatic spinal cord injury and caregivers' perceived burden in a low-income country: a cross-sectional study.

STUDY DESIGN: Cross-sectional. OBJECTIVES: To investigate factors influencing depressed mood in individuals with traumatic spinal cord injury (TSCI) and caregivers' perceived burden in a low-income country. SETTING: Dhulikhel Hospital and Spinal Injury Rehabilitation Center, Nepal. METHODS: We recruited 95 couples (one person with spinal cord injury and one caregiver) aged 18-65 years. Participants with various levels and types of TSCI with post-injury duration of or providing care for ≥1 month were eligible for the study. The Nepali Beck Depression Inventory and the Zarit Burden Interview-12 were used to identify depressed mood of those with TSCI and caregivers burden, respectively. Linear regression analyses to explore associations was performed. RESULTS: Mean ages of the individuals with TSCI and caregivers were 34.8 (11.0) and 33.6 (12.3) years, respectively. Most of the participants with TSCI were male (67.4%) and (73.7%) had paraplegia. The caregivers were predominantly female (61.1%). Depressed mood was seen in 68% of those with TSCI, and burden was reported by 91.6% of caregivers. Depressed mood was significantly associated with gender, education, lesion type, and duration since the injury. Caregiver burden was associated with occupation, education, level of injury, length of care, and depressed mood level in the person with TSCI. Economic burden was found to be the highest (71.5%) followed by responsibility (22.2%) and time-related (6.3%) burden. CONCLUSIONS: The prevalence of depressed mood among individuals with TSCI and the burden of caregiving among caregivers was high. Depressed mood in those with TSCI was associated with caregiver burden. Country-specific contextual factors need to be considered in deriving rehabilitation protocols.

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland.

OBJECTIVE: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. METHODS: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. RESULTS: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. CONCLUSION: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. PRACTICE IMPLICATIONS: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.

Family-centered empowerment process in individuals with spinal cord injury living in Iran: a grounded theory study.

STUDY DESIGN: This was a qualitative study using grounded theory method. OBJECTIVES: To explain the process of family-centered empowerment in a population of individuals with SCI living in Iran. SETTING: Brain and SCI Research Center, Social Welfare Center, and SCI Association of Tehran; Iran. METHODS: Participants were 19 persons with traumatic SCI, 13 family member caregivers, and 11 health care providers selected through purposeful sampling. Data were collected using face-to-face, semi-structured interviews, which were continued until data saturation. The interview data were methodically collected and analyzed using Strauss and Corbin's (1998) recommended method for grounded theory. Constant comparative analysis was simultaneously conducted through reviews of the interview statements, observations of behavior, interviewer field notes, and interviewer memos. The analysis was managed in MAXQDA software version 10. RESULTS: The process of family-centered empowerment following SCI included five categories: (1) disruption in the existential integrity of the individual; (2) constructive life recovery; (3) inhibitors of family-centered empowerment; (4) facilitators of family-centered empowerment, and (5) back on track. Constructive life recovery was selected as the core variable using the grounded theory method. This core variable identified the strategies most frequently used by the participants to cope with the challenges of SCI-related impairment, disability, and overall life management. CONCLUSIONS: Family-centered empowerment process in individuals with SCI living in Iran emerged from the data. The model includes early disruptions in the bio-psycho-social and vocational lives of individuals with SCI and their families, strategies for recovery post injury, inhibitors and facilitators of family-centered empowerment, the gradual return to work and daily activities, and the expected social roles for individuals with SCI.

A manual-based family intervention for families living with the consequences of traumatic injury to the brain or spinal cord: a study protocol of a randomized controlled trial.

BACKGROUND: Acquiring a traumatic injury constitutes a severe life change for the survivor, but also for the surrounding family. The paradigm of helping the family has primarily been on psychosocial interventions targeting caregivers. However, interventions including both survivor and caregivers should be an essential part of treatment, as the whole family's functional level and mental health can be affected. The current study protocol presents a manualized family intervention for families living with traumatic injury to the brain (TBI) or spinal cord (tSCI). The objectives are to investigate if the intervention improves quality of life (QoL) and decreases burden. It is hypothesized that the family intervention improves problem-solving strategies and family dynamics, which will reduce the burden. This may improve the caregivers' mental health, which will improve the support to the survivor and QoL. METHODS: The study is an interventional, two-arm, randomized controlled trial. During a 2-year period, a total of 132 families will be included. Participants will be recruited from East-Denmark. Inclusion criteria are (1) TBI or tSCI, (2) ≥ 18 years of age, (3) ≥ 6 months to ≤ 2 years since discharge from hospital, (4) ability to understand and read Danish, (5) cognitive abilities that enable participation, and (6) a minimum of one family member actively involved in the survivor's life. Exclusion criteria are (1) active substance abuse, (2) aphasia, (3) prior neurologic or psychiatric diagnose, and (4) history of violence. Within each disease group, families will be allocated randomly to participate in an intervention or a control group with a ratio 1:1. The intervention groups receive the family intervention consisting of eight sessions of 90 min duration. Families in the control groups receive 2 h of psychoeducation. All participants complete questionnaires on QoL, self-perceived burden, family dynamics, problem-solving strategies, mental health, and resilience at pre-intervention, post-intervention, and 6-month follow up. CONCLUSION: If the intervention is found to have effect, the study will contribute with novel knowledge on the use of a manual-based intervention including the entire family. This would be of clinical interest and would help families living with the consequences of TBI or tSCI. TRIALS REGISTRATION: ClinicalTrials.gov, NCT03814876. Retrospectively registered on 24 January 2019.

Development of Emotional Well-Being indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Context: Emotional Well-Being (EWB) post-spinal cord injury or disease (SCI/D) is a critical aspect of adjustment to disability. Advancing care and assuring equity in care delivery within this rehabilitation care domain is essential. Herein, we describe the selection of EWB structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods: A pan-Canadian Working Group completed the following tasks: (1) defined the EWB construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with EWB; and, (4) prepared a process map. Facilitated meetings allowed selection and review of feedback following rapid-cycle evaluations of proposed structure, process and outcome indicators. Results: The structure indicator is the proportion of staff with appropriate education and training in EWB and access to experts and resources. The process indicator is the proportion of SCI/D patients who were screened for depression and anxiety symptoms at rehabilitation admission and rehabilitation discharge. The intermediary outcome is the proportion of SCI/D patients at risk for depression or anxiety at rehabilitation discharge based on screening symptom scores. The final outcomes are: (a) proportion of individuals at risk for depression or anxiety based on screening symptom scores; and (b) proportion of individuals who received referral for EWB services or intervention. Conclusion: The proposed indicators have a low administrative burden and will ensure feasibility of screening for depression and anxiety at important transition points for individuals with SCI/D. We anticipate that the current structures have inadequate resources for at-risk individuals identified during the screening process.

National Spinal Cord Injury Registry of Iran (NSCIR-IR) - a critical appraisal of its strengths and weaknesses.

The National Spinal Cord Injury Registry of Iran (NSCIR-IR) is a not-for-profit, hospital-based, and prospective observational registry that appraises the quality of care, long-term outcomes and the personal and psychological burden of traumatic spinal cord injury in Iran. Benchmarking validity in every registry includes rigorous attention to data quality. Data quality assurance is essential for any registry to make sure that correct patients are being enrolled and that the data being collected are valid. We reviewed strengths and weaknesses of the NSCIR-IR while considering the methodological guidelines and recommendations for efficient and rational governance of patient registries. In summary, the steering committee, funded and maintained by the Ministry of Health and Medical Education of Iran, the international collaborations, continued staff training, suitable data quality, and the ethical approval are considered to be the strengths of the registry, while limited human and financial resources, poor interoperability with other health systems, and time-consuming processes are among its main weaknesses.

Patterns of coping among caregivers of children with spinal cord injury: Associations with parent and child well-being.

INTRODUCTION: Few studies have investigated how caregivers manage stressors associated with their child's spinal cord injury (SCI) and how these patterns relate to their child's coping and adjustment. The current study explored empirically derived coping profiles among caregivers of youth with SCI and the relation of these patterns to parent and youth psychosocial outcomes. METHOD: This was a cross-sectional survey of 318 children (ages 1 to 18) and a primary caregiver. Participants completed measures assessing demographics, coping, quality of life (QOL), anxiety, and depression. We utilized hierarchical and nonhierarchical cluster analyses to identify unique coping patterns and one-way analysis of variance with control variables to assess relations between parental coping and psychosocial well-being. RESULTS: The analyses produced 3 parent coping clusters, which included avoidant (n = 47), constructive (n = 119), and adjusted/low (n = 152). ANCOVAs revealed that parents in the avoidant cluster, who utilized disengagement and blaming strategies, had significantly worse mental health symptoms compared to the constructive and adjusted low coping clusters. Specifically, avoidant coping was significantly related to increased symptoms of caregiver depression (p < .001) and anxiety (p < .001) as well as children's self-report of anxiety (p = .002), depression (p < .005) and emotional QOL (p < .001). DISCUSSION: These findings highlight the importance of fostering constructive and positive coping for both the children who face chronic illness and their caregivers. (PsycINFO Database Record (c) 2019 APA, all rights reserved).