BACKGROUND
Caregiver burden (CB) is a well-recognised consequence of providing care to people with spinal cord injury (SCI). Care recipients with SCI frequently experience secondary conditions (SCs), defined as the physical and psychological complications that occur as a result of SCI which can lead to increased hospitalisation and reduced functionality, quality of life and social participation.
As SCs may increase the perceived CB, and as there is little available literature on the impact of SC’s on caregivers, this study aimed to assess the impact of physical and psychological secondary conditions experienced by people with SCI on the perceived burden of family caregivers.
METHODS
Multicentre cross-sectional study in two urban spinal units in Italy and Ireland. 56 dyads of family caregivers and individuals with SCI were recruited during follow-up appointments at outpatient clinics in each centre.
Care recipients completed a toolset consisting of demographic information, the Modified Barthel Index (MBI), the Short Form 8 (SF-8) quality of life scale, the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS), the Patient Health Questionnaire-9 (PHQ-9) and the General Anxiety Disorder-7 (GAD-7). In addition caregivers completed the Caregiver Burden Inventory in Spinal Cord Injury (CBI-SCI), a multi-dimensional measure of CB.
Descriptive statistics were applied to depict the characteristics of the sample, as well as the most represented SCs and the extent of CB. Bivariate analyses between the total score of CBI-SCI and its dimensions were performed to highlight significant correlations with care recipients’ SCs.
RESULTS
Almost all caregivers lived with their care recipients (84%), the majority assisted for at least three years (71%) and a small proportion reported economic difficulties during the previous year (18%). The majority of care recipients had SCI for more than three years (80%), had paraplegia (55%) and traumatic SCI aetiology (75%). The majority had been rehospitalized during the previous year (57%). No significant differences between centres were identified.
Spasticity was rated as an occasional or chronic complication by two-thirds of the sample (66%), while UTIs (56%) and joint/articular pain (53%) were present in more than half. Physical complications were all correlated with at least one dimension of perceived burden. In contrast, no correlations were identified between the psychological status of care recipients and the level of burden among family caregivers.
The Time-Dependent dimension of burden showed the highest number of correlations, most significantly with number of caregiving hours (r=0.67; p<0.01) and more moderately with functional level of care recipients (r=0.47; p<0.01). Emotional burden attained only a weak correlation with the SCI-SCS score (r=0.27; p=0.05). Bladder dysfunction and urinary tract infections significantly influenced all dimensions of CB, while only pressure ulcers influenced the Time-dependent dimension. Level and completeness of injury and duration of caregiving increased the amount of perceived CB.
CONCLUSION
Secondary conditions following SCI influence the subjective burden experienced by family caregivers. Perceived burden increases with increasing complexity of SCs. This study highlights the importance of healthcare policies and interventions designed to reduce SCs, not only to promote well-being for individuals with SCI but to reduce CB amongst family caregivers.

Introduction
The Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey is part of a global cross-sectional study to describe the ’lived experience’ of people with spinal cord injury (SCI) and identify key factors influencing level of functioning and independence, health, community participation and quality of life.

Methods
The Aus-InSCI study uniquely combined data from SCI units in four Australian states, a government insurance agency and three consumer organisations, using privacy-preserving data management, secure transfer and data-linkage processes, to create a representative, population-based, anonymised dataset of people with SCI. The Aus-InSCI questionnaire consists of 125 (international) and additional 68 (national) questions, including socio-demographics, SCI characteristics, body functions and structures, activities and participation, environmental and personal factors, and appraisal of health and well-being.

Results
1583 adults (18 years or older) with traumatic or non-traumatic SCI at least 12 months post-injury were recruited from March to December 2018. The mean age for the whole cohort was 58 ± 14 years, with majority of participants being male (73%) with paraplegia (61%) and incomplete lesions (68%). The cohort possessed varying durations of ‘lived experience’ with their SCI with a range from under 5 years (23%) to more than 30 years (21%). Overall quality of life was rated by majority of respondents as being good (43.2%) or very good (19.1%). Twenty-nine percent of the cohort were engaged in paid work activities. Reasons given for not currently working included health condition or disability (30.4%), not wanting (10.6%) or needing (4.8%) to work, lack of workplace accessibility or assistive devices (6.1%), fear of losing disability pension (5.9%), not being able to find suitable work (3.9%) or knowing how or where to seek work (2.3%). Compared to one year ago, most participants rated their current health in general as about the same (55.3%), with smaller groups almost equally divided between being better (22.9%) or worse (21.8%). The most common health issues reported were fatigue (74%), sexual dysfunction (71%), pain (69%), sleep (57%), spasm/contracture (56%) and bowel problems (50%). Most people found (strongly agreed or agreed) that fatigue significantly interfered with physical functioning (73.3%) and work, family and social life (64.9%). Pain intensity was rated as high (mean 5 ± 3/10), with many participants having pain in previous week. A high proportion of participants (39.1%) reported having severe levels (VAS 7-10/10) of pain with high interference in activities (36.4%), mood (33.8%) and sleep (37.4%). Problems with sleep were prevalent, with participants reporting frequently (three or more times per week) being unable to get to sleep within 30 minutes (29.6%), waking up overnight or early in morning (59.3%), getting up to use bathroom (36.8%) and snoring (17.6%), with very bad (9.1%) or fairly bad (27.6%) overall sleep quality.

Conclusions
Aus-InSCI represents the largest and most comprehensive survey of health-related issues, functioning, social inclusion, economic participation and support needs ever conducted in Australia. Results demonstrate the high impact of pain, fatigue and sleep disturbance on level of functioning and participation, demanding more attention and better management approaches.

Introduction: Spinal cord injury (SCI) causes visible signs of physical disability that are associated with stigmatization. Although stigma is common among individuals with physical disabilities, limited information exists on stigma and psychosocial outcomes following SCI. Based on studies in other medical conditions, it is suspected that SCI-related stigma leads to psychological stress, mood disturbance, fear, restriction of social participation, and increased disability. Therefore, the purpose of the present study was to (1) assess the relationship between stigma and psychosocial outcomes among individuals with SCI, and (2) examine the potential mediating and/or moderating influence of sociodemographic and injury factors relevant to the associations between stigma and the psychosocial outcomes observed in Aim 1.
Methods: 203 men and women enrolled in the US Spinal Cord Injury Model Systems National Database were included in this cross-sectional analysis and completed questionnaires via telephone. Stigma was the primary predictor (independent variable). The outcomes were depression symptoms, life satisfaction, participation (physical independence, mobility, occupation, social integration), self-efficacy, and perceived disability. For Aim 1, simple linear and logistic regression models were used to assess the bivariate relationship between stigma and the continuous and categorical psychosocial outcomes respectively. For Aim 2, potential mediators and moderators were identified by evaluating the relationship between the psychosocial outcomes and the interaction effect of each sociodemographic and injury-relationship factors with stigma.
Results: Participants were 79% male and 98% white; 66% used a wheelchair, 54% had tetraplegia, and 55% had motor complete injuries. On average, participants were 53 years old and 19 years post-injury. Significant relationships were found between stigma and depression symptoms (p < 0.0001), satisfaction with life (p < 0.0001), participation-mobility (p = .0005), self-efficacy (p < 0.0001), and perceived disability (p < 0.0001). Several socio-demographic and injury-related factors were identified to be partial mediators of stigma’s relationship with the following outcomes: (1) pain severity partially mediated the relationship between stigma and depression symptoms; (2) time since injury, days hospitalized, and relationship status partially mediated the relationship between stigma and satisfaction with life; (3) days hospitalized and household income partially mediated the relationship between stigma and self-efficacy; and (4) time since injury and days hospitalized partially mediated the relationship between stigma and perceived disability. Additionally, the following socio-demographic and injury-related factors were found to be moderators: (1) pain severity and insurance provider moderated the relationship between stigma and satisfaction with life; (2) wheelchair type moderated the relationship between stigma and participation-physical independence; (3) wheelchair use moderated the relationship between stigma and participation-occupation; and (4) pain severity moderated the relationship between stigma and perceived disability.
Conclusions: Stigma was significantly associated with depression symptoms, satisfaction with life, participation, self-efficacy, and perceived disability. Several socio-demographic and injury-related factors were also identified that had a moderating and/or mediating effect on the relationship between stigma and psychosocial outcomes. This work provides a foundation for future studies testing interventions to mitigate the impact of stigma on mood, satisfaction with life, and community integration after SCI.

Introduction: The concept of Active Rehabilitation (AR) training programs was first developed in Sweden 40 years ago and it has spread to more than 20 countries around the world. These residential community rehabilitation programs last 7-10 days and are led by peer mentors as trainers and educators. The focus is to support individuals with SCI through physical training, education and empowerment to improve their skills, knowledge and self-esteem, and subsequently to reach their full potential at an activity and participation level. Despite a plethora of positive anecdotal evidence, the effects of AR programs have not been evaluated scientifically. The INTERnational Project for the Evaluation of “activE Rehabilitation” (inter-PEER) started in Sweden in 2018 aiming to evaluate the effects of these programs on community-dwelling participants with SCI. This study provides preliminary data from the first year of the study.

Methods: This prospective cohort study included all participants in three AR programs during 2018. Participants were evaluated in the beginning (T1), at the end (T2) and at 3 months (T3) after the program. Evaluation involved an online survey (T1-T2-T3) and a practical wheelchair skills test (T1-T2). The primary outcome measures were the Spinal Cord Independence Measure Self-report (SCIM-SR), the Queensland Evaluation of Wheelchair Skills (QEWS), the Wheelchair Skills Test Questionnaire (WST-Q) and the Moorong Self-Efficacy Scale (MSES). The secondary outcome measures included the 11-item Life Satisfaction Questionnaire (LiSat-11), the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), the Leisure Time Physical Activity Questionnaire for people with SCI (LTPAQSCI) and the 10-item Connor-Davidson Resilience Scale (CD-RISC-10).

Results: Out of the 49 participants, there were 30 (61%) men, 25 (51%) with tetraplegia and 31 (63%) with incomplete lesions. The mean age was 43 years (SD=16; range: 17-74) and the mean time-since-injury was 3 years (SD=7; range: 0.4-37). Participants improved their overall SCIM-SR score by 3.3 points between T1-T2 (p<.001;d=0.71) and results were largely retained at follow-up (p=0.038;d=0.36). Participants achieved most gains in the mobility and self-care subscales. Participants reported higher scores on MSES at completion (p=0.014;d=0.41), but the gains were halved at follow-up. Improvements were also achieved in the overall QEWS score (p<.001;d=0.25), attributed primarily to improvements on ascending and descending a gutter. Improvements in QEWS were supported by similar gains in WST-Q capacity score at T2 that were retained at T3. Gains in confidence with wheelchair skills dropped at T3 as compared to T2. No improvements were reported in any of the secondary outcome measures.

Conclusions: This is the first full-scale evaluation of the AR training programs internationally. Preliminary results suggest that AR programs had positive effects on the participants’ level of physical independence, wheelchair skills and self-efficacy that were largely retained at 3-month follow-up. Despite the lack of a control group, the relative long time-since-injury supports that improvements could be attributed to the AR program, rather than on a natural progression. Continuation of the data collection in 2019 will provide more participants and allow for sub-group analysis related to number of programs attended, level and completeness of injury.

Importance: Individuals living with a spinal cord injury (SCI) are at heightened risk for a number of chronic health conditions such as secondary comorbidities, that may develop or be influenced by the injury, the presence of impairment, and/or the process of aging. However, very little is known about the development of psychological morbidities and noncommunicable among individuals living with traumatic SCIs.

Objective: The objective of this study was to compare the longitudinal incidence of psychological morbidities and chronic noncommunicable diseases among adults with SCIs as compared to adults without SCIs.

Design: Longitudinal cohort study from a nation-wide insurance claims database.

Setting and Participants: Privately-insured beneficiaries were included if they had an ICD-9-CM diagnostic code for a traumatic SCI (n=6,847). Adults without SCIs were also included (n=857,245).

Exposures and Main Outcomes: Incidence of common psychological morbidities and chronic noncommunicable diseases were compared.

Results: Adults with SCIs had a higher incidence of adjustment reaction (7.2% vs 5.0%), anxiety disorders (19.3% vs 14.1%), persistent depressive disorder (4.2% vs 3.1%), drug or alcohol dependence (2.4% vs 1.0%), central pain syndrome or psychogenic pain (1.0% vs 0.2%), dementia (6.5% vs 1.5%), insomnia (11.0% vs 7.2%), episodic mood disorder (9.0% vs. 5.4%), and psychological multimorbidity (29.3% vs 11.6%), as compared to adults without SCIs. The adjusted hazard ratio of each psychological outcome were significantly higher for individuals with SCI, and ranged from HR=1.14 (95%CI: 1.00-1.38) for persistent depressive disorder to HR=3.32 (95%CI: 1.93-5.71) for psychogenic pain. Adults with SCIs also had a significantly higher incidence of all chronic diseases and chronic disease multimorbidity (51.1% vs. 14.1%), except HIV/Aids. After propensity matching for age, education, race, sex, and the chronic diseases (n=5,884 matched pairs), there was still a higher incidence of adjustment reaction (7.0% vs 4.6%), anxiety disorders (19.3% vs 16.4%), drug or alcohol dependence (2.2% vs 1.0%), central pain syndrome or psychogenic pain (1.0% vs 0%), dementia (7.1% vs 4.5%), insomnia (11.4% vs 8.9%), and episodic mood disorder (9.2% vs. 5.9%) among adults with SCIs.

Conclusions: Adults with SCIs have a significantly increased incidence of psychological morbidities, chronic disease, and multimorbidity, as compared to adults without SCIs. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce risk of disease onset/progression in this higher risk population.

Introduction: The goal of this study is to measure the attitudes and knowledge of health professionals concerning human rights within the context of disability, science, and technology access. In the United States (US), and other countries with market-based health systems, people with spinal cord injury (SCI) face barriers accessing necessary services, equipment, and supports that contribute to an independent, healthy and meaningful life. These barriers are not only frustrating for the individuals living with SCI, but also for the health professionals who provide care and recommend services and equipment. The inability of people with SCI to obtain necessary technology, supports and services reflect violations of their rights, however, health professionals and people with disabilities rarely speak the language of human rights. Viewing such limitations through the lens of human rights may offer new strategies for realizing the equipment and technological needs of people with SCI that are necessary for successful societal integration.

Methods: To date, qualitative Interviews were conducted with 15 health professionals across the US who specialize in SCI care and research. Interviews were conducted in person at the 2018 annual scientific meeting of the American Spinal Injury Association or by phone following the meeting. Interviews were recorded, transcribed verbatim, and coded to identify emerging themes within and across each participant’s content.

Results: Initial results indicate: 1) significant knowledge about and concern for social barriers experienced by people with SCI while trying to access equipment and technology, 2) reduced knowledge about human rights discourse and potential utility in realizing economic, social and cultural rights for people with SCI, and 3) strong interest in learning more about international human rights law as a tool for improving access to services and technology by people with SCI. Additionally, even though health professionals were not explicitly using human rights terminology, the advocacy efforts reported by most of the professionals shows that they are in fact “doing human rights.”

Conclusions: Measuring human rights perspectives of health professionals can better inform gaps in knowledge and opportunities for exploring how international human rights law may influence increased realization of the resources needed by people with disabilities for societal integration. While this study reveals a lack of knowledge about the utility of human rights discourse in addressing the limitations people with SCI experience, health professionals express a willingness to learn about the utility of human rights treaties in advancing the needs of people with SCI. Increasing human rights literacy in health professionals and people with SCI can catalyze meaningful and effective ideas for improving policies that support the human rights of all people with disabilities.

Support:
Science and Human Rights Coalition of the American Association for the Advancement of Science (AAAS).