Leisure-Time Physical Activity Participation in Middle-Aged and Older Adults With a Spinal Cord Injury in Australia.

Objectives: Adults with spinal cord injury (SCI) are often sedentary, increasing their risk of cardiometabolic diseases. Leisure-time Physical Activity (LTPA) is physical activity completed during recreation time for enjoyment. We aimed to quantify LTPA in people ≥45 years with SCI and to explore its relationship with participants' characteristics. Methods: This is a secondary analysis on a subset of the Australian International SCI Survey in participants ≥45 years, at least 12 months post-injury. We described levels of LTPA and used multivariable regressions to estimate the associations between participant characteristics and LTPA. Results: Of 1,281 participants (mean age: 62.7 years, mean time since injury: 18.7 years; 74% males) 44% reported no participation in LTPA. The average LTPA participation was 197 (SD 352) minutes per week (median: 50). Females (ß = -62.3, 95% CI [-112.9, -11.7]), and participants with non-traumatic injuries (ß = -105.2, 95% CI [-165.9, -44.6]) performed less LTPA. Time since injury was not associated with moderate-to-heavy LTPA (LR: Probability > F = 0.785). Conclusion: LTPA promotion in the SCI population ≥45 years focusing on females and non-traumatic injuries is warranted.

Are Middle- or Older-Aged Adults With a Spinal Cord Injury Engaging in Leisure-Time Physical Activity? A Systematic Review and Meta-Analysis.

Objectives: To investigate the amount of Leisure-Time Physical Activity (LTPA) that people over 45 years with a spinal cord injury (SCI) performed and to determine the frequency, duration, intensity, and modality of LTPA performed. Data Sources: We searched 5 major electronic databases (CINAHL, SCOPUS, EMBASE, MEDLINE, and PubMed) from inception to March 2023. Study Selection: Cross-sectional, longitudinal studies and control arm of controlled trials that assessed LTPA in participants over 45 years old, with a SCI. We included 19 studies in the review and 11 in the meta-analysis. Data Extraction: We followed the PRISMA checklist for Systematic Reviews. Two review authors independently assessed the risk of bias and extracted data on participants' demographics, injury characteristics, and LTPA participation of the included studies. Risk of bias was assessed using the Joanne Briggs Institute critical appraisal tool for cross-sectional studies. Any conflicts were resolved by a third author. Data Synthesis: We found considerable variability in LTPA participation in adults 45 years and older with SCI. An estimated 27%-64% of participants did not take part in any LTPA. A random effects meta-analysis model was completed for studies that reported total or moderate-to-heavy LTPA scores in minutes per week. Overall, participants (n=1675) engaged in 260 [205;329] (mean [95% CI]) mins/week of total LTPA. Those participating in moderate-heavy intensity LTPA (n=364) completed 173 [118; 255] (mean [95% CI]) mins/week. LTPA modalities included walking, wheeling, hand-cycling, basketball, and swimming, among others. Conclusions: While many older adults with SCI seem to be meeting the recommended weekly physical activity volume, many still remain sedentary. There was significant variation in reporting of frequency, intensity, and duration of LTPA and reporting on modality was limited. Because of differences in reporting, it was challenging to compare results across studies. Data constraints prevented subgroup analysis of LTPA disparities between paraplegia and tetraplegia.

Unmet healthcare needs, access to services and experiences with health providers among persons with spinal cord injury in Australia.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: Appropriate and timely lifelong access to healthcare following a spinal cord injury (SCI) is critical, yet unmet healthcare needs in this population are common. Poor experiences with healthcare providers can be a barrier to health-seeking behaviour, and we hypothesised that there would be an association between unmet healthcare needs and care experiences. This study aimed to: (1) describe healthcare provider utilisation in the past year, unmet care needs and satisfaction with healthcare services; (2) explore the association between experiences with healthcare providers and unmet healthcare needs; and (3) explore the association between healthcare provider utilisation and participant characteristics, including unmet healthcare needs. SETTING: Community. METHODS: Analysis of data for 1579 Australians aged ≥ 18, who were ≥ 1-year post-SCI and living in the community. Bayesian penalised regression was used to model six binary outcomes: unmet healthcare needs; the use of general practitioners (GPs), allied health practitioners, rehabilitation specialists; medical specialists; and hospitalisations in the past 12-months. RESULTS: Unmet needs were reported by 17% of participants, with service cost the common deterrent. There was evidence of an effect for provider experiences on unmet healthcare needs, but no evidence that unmet healthcare needs was associated with the use of GPs, allied health practitioners, and rehabilitation or medical specialists. CONCLUSIONS: Unmet healthcare needs were reported in the context of high healthcare use and large proportions of secondary conditions in a cohort with long-term SCI. Improved health access for people with SCI include better primary-secondary care collaboration is needed.

Shining a light on the road towards conducting principle-based co-production research in rehabilitation.

Moving from participatory approaches incorporating co-design to co-production in health research involves a commitment to full engagement and partnership with people with lived experience through all stages of the research process-start to finish. However, despite the increased enthusiasm and proliferation of research that involves co-production, practice remains challenging, due in part to the lack of consensus on what constitutes co-production, a lack of guidance about the practical steps of applying this approach in respect to diverse research methods from multiple paradigms, and structural barriers within academia research landscape. To navigate the challenges in conducting co-produced research, it has been recommended that attention be paid to focusing and operationalising the underpinning principles and aspirations of co-production research, to aid translation into practice. In this article, we describe some fundamental principles essential to conducting co-production research (sharing power, relational resilience, and adopting a learning mindset) and provide tangible, practical strategies, and processes to engage these values. In doing so, we hope to support rehabilitation researchers who wish to engage in co-production to foster a more equitable, ethical, and impactful collaboration with people with lived experience and those involved in their circle of care.

Co-design of the Spinal Cord Injury Health Maintenance Tool to Support Self-Management: A Mixed-Methods Approach.

Background: There is a lack of consumer-friendly tools to empower and support people living with spinal cord injury (SCI) to self-manage complex health needs in community. This article describes the co-design process of the new SCI Health Maintenance Tool (SCI-HMT). Methods: Co-design of the SCI-HMT using a mixed-methods approach included a rapid review, e-Delphi surveys with range of multidisciplinary health care professionals (n = 62), interviews of participants with SCI (n = 18) and general practitioners (n = 4), focus groups (n = 3 with 7, 4, and 4 participants with SCI, respectively), design workshops with stakeholders (n = 11, 8), and end-user testing (n = 41). Results: The SCI-HMT (healthmaintenancetool.com) was developed based on participatory research with data synthesis from multiple sources. Five priority health maintenance issues for bladder, bowel, skin, pain, and autonomic dysreflexia were originally covered. Best practice recommendations, red flag conditions, referrals, and clinical pathways were agreed on through an e-Delphi technique. Qualitative analysis identified six broad key concepts for self-management, including early symptom recognition, role of SCI peers, knowledge sharing with primary care, general practitioners as gatekeepers, and shared decision-making and highlighted a need to place much stronger emphasis on mental health and well-being. Design workshops and end-user testing provided key insights about user experience, functionality, and content for the SCI-HMT. Conclusion: The co-design process engaging end users, including people with SCI and general practitioners, enabled a shared understanding of the problem and identification of important needs and how to meet them. Informed by this process, the SCI-HMT is a freely accessible resource supporting SCI self-management, shared decision-making, and early problem identification.

Using the consolidated Framework for Implementation Research to integrate innovation recipients' perspectives into the implementation of a digital version of the spinal cord injury health maintenance tool: a qualitative analysis.

BACKGROUND: Despite advances in managing secondary health complications after spinal cord injury (SCI), challenges remain in developing targeted community health strategies. In response, the SCI Health Maintenance Tool (SCI-HMT) was developed between 2018 and 2023 in NSW, Australia to support people with SCI and their general practitioners (GPs) to promote better community self-management. Successful implementation of innovations such as the SCI-HMT are determined by a range of contextual factors, including the perspectives of the innovation recipients for whom the innovation is intended to benefit, who are rarely included in the implementation process. During the digitizing of the booklet version of the SCI-HMT into a website and App, we used the Consolidated Framework for Implementation Research (CFIR) as a tool to guide collection and analysis of qualitative data from a range of innovation recipients to promote equity and to inform actionable findings designed to improve the implementation of the SCI-HMT. METHODS: Data from twenty-three innovation recipients in the development phase of the SCI-HMT were coded to the five CFIR domains to inform a semi-structured interview guide. This interview guide was used to prospectively explore the barriers and facilitators to planned implementation of the digital SCI-HMT with six health professionals and four people with SCI. A team including researchers and innovation recipients then interpreted these data to produce a reflective statement matched to each domain. Each reflective statement prefaced an actionable finding, defined as alterations that can be made to a program to improve its adoption into practice. RESULTS: Five reflective statements synthesizing all participant data and linked to an actionable finding to improve the implementation plan were created. Using the CFIR to guide our research emphasized how partnership is the key theme connecting all implementation facilitators, for example ensuring that the tone, scope, content and presentation of the SCI-HMT balanced the needs of innovation recipients alongside the provision of evidence-based clinical information. CONCLUSIONS: Understanding recipient perspectives is an essential contextual factor to consider when developing implementation strategies for healthcare innovations. The revised CFIR provided an effective, systematic method to understand, integrate and value recipient perspectives in the development of an implementation strategy for the SCI-HMT. TRIAL REGISTRATION: N/A.

COVID-19 and spinal cord injury: clinical presentation, clinical course, and clinical outcomes of people hospitalised.

STUDY DESIGN: Retrospective study OBJECTIVES: To describe the presenting symptoms/signs, clinical course and outcomes in hospitalised people with spinal cord injury (SCI) and symptomatic COVID-19 infections. SETTING: One university hospital and two SCI centres in Switzerland. METHODS: Descriptive analysis of symptoms/signs, clinical course and outcomes of people with SCI with symptomatic COVID-19 infections and need for hospitalisation. RESULTS: Twenty-two people with SCI were included, 15 (68%) were male, median age 64.5 years (interquartile range, IQR, 52-73 years). Nine (41%) had tetraplegia, and eight (36%) were classified with motor-complete lesions. Frequent clinical symptoms were fever (59%), coughing (54%), fatigue (50%), and dyspnoea (27%). Most frequent complications were bacterial pulmonary superinfection (18%), and acute respiratory distress syndrome (18%). Fifteen persons (68%) needed oxygen therapy during the course of hospitalisation, and 7 (32%) people were ventilated. Median length of stay (LOS) was 23 days (IQR 15-35), varying by age for people under 60 years with a median LOS of 9 days (IQR 8-27), and for those older than 60 years with a median of 34 days (IQR 17-39), respectively. In total, 3 persons (14%) died during hospitalisation, all older with paraplegia. CONCLUSIONS: Typical symptoms like fever and coughing were not present in all people. People with tetraplegia did not demonstrate worse outcomes, on the contrary, they had shorter LOS, no difference in ventilation needs, and no higher mortality compared to people with paraplegia. Older people showed longer LOS. This study recommends close supervision of the SCI population to detect early signs and symptoms of COVID-19 infection.

The Swedish version of the Moorong Self-Efficacy Scale (s-MSES) - translation process and psychometric properties in a community setting.

STUDY DESIGN: Psychometric study. OBJECTIVES: To i) describe the translation process and ii) explore the data completeness, targeting, reliability and aspects of validity of the Swedish version of Moorong Self-Efficacy Scale (s-MSES). SETTINGS: Community rehabilitation program. METHODS: Ninety-two program participants and 42 peer mentors with spinal cord injury (SCI) in Active Rehabilitation training programs (enrolled in the International Project for the Evaluation of activE Rehabilitation (Inter-PEER)) were included. The s-MSES was completed online, once for program participants and twice for peer mentors. The translation process was based on guidelines and involved researchers, clinicians and consumers. RESULTS: Minor linguistic adaptations were made. Ninety-one percent obtained a total score. As expected, peer mentors exhibited ceiling effects in all subscales. Cronbach´s alpha for the total scale was 0.92 (subscales 0.74-0.83). The intraclass correlation coefficient was excellent for the total and subscale scores (0.78-0.91). The s-MSES exhibited sensitivity to changes and there were no systematic changes between evaluation points. The s-MSES correlated significantly and positively with life satisfaction and resilience, and negatively with depression/anxiety. CONCLUSION: The s-MSES was translated through a rigorous, consumer-involved process ensuring accurate linguistic translation and cultural adaptation. Our results support the data completeness, targeting, reliability and aspects of validity of the s-MSES. The s-MSES can thus be considered suitable to assess self-efficacy in persons with SCI in community rehabilitation settings. The now available Swedish version of the MSES will facilitate national research, clinical evaluations and international comparisons. SPONSORSHIP: Not applicable.

Activity-Based Therapy for Mobility, Function and Quality of Life after Spinal Cord Injuries-A Mixed-Methods Case Series.

(1) Background: Despite inconclusive evidence on the benefits of activity-based therapies (ABTs) in people with spinal cord injuries, implementation has occurred in clinics worldwide in response to consumers' requests. We explored the clinical changes and participants' perceptions from engaging in an ABT program in the community. (2) Methods: This mixed-methods study involved a pragmatic observational multiple-baseline design and an evaluation of participants' perceptions. Fifteen participants were included. Outcome measures were balance in sitting using the Seated Reach Distance test, mobility using the Modified Rivermead Mobility Index and quality of life using the Quality of Life Index SCI version pre- and post-participation in an ABT community-based program. Linear mixed models and logistic regressions were used to analyse the effects of intervention. Semi-structured interviews explored participants' perceptions using inductive thematic analysis. (3) Results: There was an increase of 9% in the standardised reach distance (95% CI 2-16) for sitting balance, 1.33 points (95% CI: 0.81-1.85) in mobility and 1.9 points (0.17-2.1) in quality of life. Two themes emerged from the interviews: (1) reduced impact of disability and an increased sense of life as before, and (2) the program was superior to usual rehabilitation. No adverse events related to the intervention were observed. (4) Conclusion: ABT delivered in the community improved clinical outcomes in people with a chronic SCI. High levels of satisfaction with the program were reported.

Complex lived experiences and hidden disability after spinal cord injury: a latent profile analysis of the Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey.

PURPOSE: To identify and examine subgroups of people with spinal cord injury (SCI) with different patterns of lived experience, and examine hidden impairments and disability among functionally independent and ambulant people. MATERIALS AND METHODS: Latent profile analysis of population-based data from the Australian arm of the International Spinal Cord Injury (InSCI) Community survey (n = 1579). RESULTS: Latent subgroups reflected levels of functional independence and extent of problems with health, activity/participation, environmental barriers, and self-efficacy. Quality of life (QoL), psychological profiles, and activity/participation were often as good or better in participants who reported lower (vs. higher) functional independence alongside comparable burden of health problems and environmental barriers. QoL, mental health, and vitality reflected self-efficacy and problem burdens more closely than functional independence. Ambulant participants reported a substantial burden of underlying, potentially hidden impairments, with QoL and mental health similar to wheelchair users. CONCLUSION: Hidden disability among more independent and/or ambulant people with SCI can affect well-being substantially. Early and ongoing access to support, rehabilitation, and SCI specialist services is important irrespective of cause, type, severity of injury, and level of functional independence. Improved access to SCI expertise and equity of care would help to improve early recognition and management of hidden disability. TRIAL REGISTRATION: Not applicable.

Hidden disability can substantially affect the well-being and quality of life of people with spinal cord injury (SCI) who appear to be functioning well and independently.Early and ongoing access to rehabilitation and SCI specialist services is important for people with SCI of any cause, type, severity, and level of functional independence.The potential for and implications of hidden disability are key considerations for the broader community of health practitioners who manage people with SCI, to ensure that appropriate referrals to specialist SCI services occur.Hidden disability is a key consideration in the design and implementation of disability support systems.

Cognitive Failure in Adults with Spinal Cord Injury: A Valuable Adjunct Measure for Enhancing Cognitive Assessment and Rehabilitation Outcomes.

Cognitive impairment is common in persons with spinal cord injury (SCI), impacting their daily functioning and rehabilitation. This study assesses the extent of self-reported cognitive failures in everyday life in persons with SCI and its relationships with objective neurocognitive measures and psychosocial factors, including depressive mood, anxiety, perceived control, and fatigue. The differences between forty-one adults with a chronic SCI and forty-one able-bodied controls were examined. The participants completed the Cognitive Failures Questionnaire (CFQ) to assess cognitive failure and neurocognitive tests assessing attention and executive functions, as well as a psychosocial assessment. The SCI group reported higher cognitive failure rates than the able-bodied group (31.7% versus 19%, p > 0.05). Objective neurocognitive tests did not significantly correlate with the CFQ scores in either group. However, the CFQ scores were positively associated with most psychosocial factors, even after controlling for covariates. The CFQ scores were significantly associated with depressive mood in persons with SCI. These findings highlight the importance of incorporating self-reported cognitive measures into neurocognitive assessments and rehabilitation planning for adults with SCI. Self-reports capture everyday cognitive challenges that objective tests may miss. Additionally, this study highlights the strong connections between cognitive failures and psychosocial issues, particularly mood disorders, emphasizing the need for comprehensive rehabilitation and psychosocial support post-SCI, addressing both cognitive and emotional wellbeing.

International Classification of Function, Disability and Health (ICF) Word Mapping to Determine the Human Functioning Associated with Upper Extremity Surgery for Tetraplegia.

Understanding human functioning and disablement, the contributing factors and their interactions in individuals with tetraplegia is important since elective upper extremity (UE) reconstructive surgery is now offered earlier after injury prior to full recognition of what lies ahead. Qualitative and quantitative data were available from a prior series of mixed methods studies, including a case series design capturing the patients' lived-experience perspectives of nerve or tendon transfer surgery, or not as the case may be. The objective of this study was to perform secondary data analysis to determine whether the recommended outcome tools being used by clinicians reflect the all important domains of functioning identified by people with tetraplegia who were considering UE reconstructive procedures. The original 18 candidate themes derived from qualitative analysis were reviewed in retrospect, along with a content analysis of the tools' questions, undertaking word mapping links to the ICF taxonomy. The outcomes tools included in the content analysis were the Canadian Occupational Performance Measure, the Capabilities of Upper Extremity Questionnaire, The Personal Wellbeing Index, and the Grasp and Release Test. Comparison between clinical outcomes tools and the patient lived-experience data uniquely identified links to Chapter1 (b) Mental functions, which include consciousness, orientation, temperament/personality, energy/drive, and higher-level cognition.

Translation, cross-cultural adaptation and reliability testing of the barriers to physical activity and Disability survey (B-PADS) for Thai people with Spinal Cord injury.

PURPOSE: The objectives of this study were to translate and culturally adapt the Barriers to Physical Activity and Disability Survey (B-PADS) into the Thai context and to assess its inter- and intra-rater reliability. METHODS: Participants were experts in the field of spinal cord injury (SCI, n = 3), linguistic experts (n = 7), Thai-English bilingual speakers (n = 40), Thai physiotherapists (n = 8), and people with SCI living in Thailand (n = 43). The translation and cross-cultural adaptation of the B-PADS into the Thai context was conducted using a 6-step process; forward translation, reconciliation of the two translated versions, backward-translation, harmonisation, backward-translation of the revised version, and cognitive debriefing with potential users and target population. The reliability of the translated tool was assessed using Cohen's kappa (K) and McNemar's test. RESULTS: The inter-rater reliability test demonstrated high-range agreement for the majority of statements (27 out of 38; Cohen's K > 0.60) in the Thai-B-PADS final version. The intra-rater reliability test revealed that the majority of the statements (29 out of 38) in the Thai-B-PADS final version obtained substantial (Cohen's K = 0.61-0.80, p < 0.05) to perfect agreement (Cohen's K = 1.0, p < 0.05). McNemar's test displayed no statistically significant differences amongst assessors (p > 0.05) for nearly all statements. CONCLUSION: The Thai-B-PADS final version was successfully translated and culturally adapted for people with SCI.

Multi-stakeholders, including academic experts, researchers, translators, clinicians, target users and clients, should be involved in developing health-related questionnaires' translation and cultural adaptation processes.The Thai version of Barriers to Physical Activity and Disability Survey (B-PADS) possessed high levels of inter- and intra-rater reliability to assess barriers related to undertaking physical activities or exercise in people with spinal cord injury.Interactional biases and perceived social status effects may not be avoided when deploying a face-to-face interview of health-related questionnaires in a culture where social hierarchy is present within the language.The translation and adaptation processes used in this study were thorough, systematic and comprehensive, providing a culturally competent exemplar for translating health-related questionnaires between languages of different root origins.

Effects of behaviour change interventions on physical activity in people with spinal cord injury: A systematic review and meta-analysis.

OBJECTIVES: This review investigated the effectiveness of behaviour-change interventions to improve physical activity (PA) participation in individuals with a spinal cord injury. Additionally, the review sought to analyse the change in PA behaviour that might be expected by utilising behaviour change in PA interventions and what specific intervention characteristics, application of behaviour change theories, and behaviour change techniques are most efficacious. METHODS: The protocol was prospectively registered on PROSPERO: CRD42021252744, and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines were followed in this review. Eight databases were comprehensively searched using a well-defined strategy developed in collaboration with an academic liaison librarian. Randomised, non-randomised controlled, and non-controlled studies were included in this review; however, controlled and non-controlled studies were analysed separately. Studies were included if participants were older than 16 years and had an SCI of any cause, level or severity, regardless of the time since injury. The behaviour change technique taxonomy version 1 was used to code the intervention characteristics for behaviour modification. The combined effects across studies were pooled in a meta-analysis, and the risk of bias was assessed using the Cochrane Risk of Bias 2 tool. RESULTS: The search retrieved 10,155 titles and abstracts. After duplicate removal and screening against the eligibility criteria, 23 studies were included. The overall effect estimate of the change in PA participation in the controlled trials post-intervention was medium (d = 0.50, 95% CI = 0.31-0.70) in favour of behaviour-targeted interventions. The mean difference in PA volume between pre- and post-intervention was an increase of 22 minutes per week (95% CI = 5.96-38.90). Interventions that provided practical support (d = 0.81, 95% CI = 0.46-1.16), which were individualised (d = 0.62, 95% CI = 0.34-0.90) and that utilised monitoring (d = 0.59, 95% CI = 0.34-0.83) had a greater effect on change to PA than those that were group-based and did not utilise those specific techniques. CONCLUSIONS: Interventions that target behaviour change to increase PA in people with SCI appear effective. Utilising behaviour change frameworks and specific behaviour change techniques augments PA uptake and levels, and interventions aimed at improving PA in people with SCI should incorporate a behaviour modification component. More research is needed on the isolated effect of intervention structure parameters and specific behaviour change techniques.

Integrating competency analysis into national rehabilitation workforce evaluation: a case study.

BACKGROUND: Establishing a workforce capable of meeting population needs is contingent on evaluation that can inform sound policy and planning. Health workforce evaluation has traditionally relied on health labour market analysis and workload estimations. To date, competency analysis has not been included in national health workforce evaluation, despite that fact that the findings may go far in guiding decisions around workforce composition, optimisation and education and training. This case study sought to assess the feasibility and perceived added value of integrating competency analysis into national rehabilitation workforce evaluation, and to determine how competency analysis can shape rehabilitation workforce planning. The findings of the case study can be used to explore the integration of competency analysis in the evaluation of other health-related occupational groups. METHODS: Participant observation was complemented by key informant interviews with experts engaged in the national rehabilitation workforce evaluation in Poland. These experts represented stakeholders in policy, education, research, clinical practice and professional associations. RESULTS: The results indicated that competency analysis can be feasibly integrated into national rehabilitation workforce evaluation, particularly when implementation is supported through the use of online platforms. However, the collection of additional data using other tools, such as a survey of the behaviours and tasks of a wider sample of rehabilitation workers, could strengthen data reliability. Experts perceived findings of the competency analysis to be valuable for expanding the understanding of rehabilitation, shedding light on task allocation and deployment of the existing rehabilitation workforce, and advocating for the rehabilitation workforce to be strengthened, especially in relation to those occupations which may not be recognised or valued as rehabilitation workers. Although it was not possible to fully explore the impact of competency analysis data on rehabilitation workforce planning and development in this study, experts suggested that its availability would likely foster greater cooperation among occupations, which has been missing at the policy and planning level to date. It further demonstrates what competency data should be collected and reported, and provides richer information to guide decisions. CONCLUSIONS: Competency analysis complements traditional labour market analysis and workload estimates, adding depth to the understanding of how members of the workforce perform and perceive themselves, and how deficiencies in the workforce impact on the provision of care to specific population groups.

The impact of sleep quality on health, participation and employment outcomes in people with spinal cord injury: Analyses from a large cross-sectional survey.

BACKGROUND: Poor sleep is common in people with spinal cord injury (SCI), yet little is known about its impact on employment and participation outcomes. OBJECTIVES: This study aimed to (1) describe the sleep quality of a large sample of Australians with SCI and compare the results to data from an adult control and other clinical populations; (2) examine associations between sleep quality and participant characteristics; and (3) explore the relationship between sleep and outcomes. METHODS: Cross-sectional data from the Australian arm of the International Spinal Cord Injury (Aus-InSCI) survey from 1579 community-dwelling people aged >18 years with SCI were analysed. Sleep quality was assessed with the Pittsburgh Sleep Quality Index (PSQI). Relationships between participant characteristics, sleep quality and other outcomes were examined with linear and logistic regression. RESULTS: The PSQI was completed by 1172 individuals; 68% reported poor sleep (global PSQI score >5). Subjective sleep quality in people with SCI was poor (mean PSQI = 8.5, SD 4.5) when compared to adults without SCI (PSQI = 5.00, SD 3.37) and with traumatic brain injury (PSQI = 5.54, SD 3.94). Financial hardship and problems with secondary health conditions were significantly associated with worse sleep quality (p < 0.05). Poor sleep quality was strongly associated with lower emotional wellbeing and energy, and greater problems with participation (p < 0.001). Individuals engaged in paid work reported better sleep quality (mean PSQI = 8.1, SD 4.3) than unemployed individuals (mean PSQI = 8.7, SD 4.6; p < 0.05). Following adjustment for age, pre-injury employment, injury severity and years of education, better sleep quality remained strongly associated with being employed (OR 0.95, 95% CI 0.92 to 0.98; p = 0.003). CONCLUSIONS: This study demonstrated pervasive and impactful relationships between sleep quality and important SCI outcomes. Poor sleep quality was strongly associated with worse emotional wellbeing and vitality, unemployment and lower participation. Future studies should aim to determine whether treating sleep problems can improve outcomes for people living with SCI.

Relationship between secondary health conditions and life satisfaction in persons with spinal cord injury: study across twenty-one countries.

PURPOSE: To determine the relationships between impact of secondary health conditions (SHCs), treatment of SHCs, and life satisfaction (LS) following spinal cord injury (SCI) across 21 countries. Hypotheses were as follows: (1) Persons with SCI and fewer SHCs report higher LS and (2) Persons who receive treatment for SHCs report higher LS than those who do not receive treatment. METHODS: Cross-sectional survey, including 10,499 persons with traumatic or non-traumatic SCI aged 18 years or older and living in the community. To assess SHCs, 14 items adapted from the SCI-Secondary Conditions Scale were used (range 1-5). SHCs index was calculated as the mean of all 14 items. LS was assessed using a selection of 5 items from the World Health Organization Quality of Life Assessment. LS index was calculated as the mean of these 5 items. RESULTS: South Korea, Germany, and Poland exhibited the highest (2.40-2.93) and Brazil, China, and Thailand the lowest (1.79-1.90) impact of SHCs. Indexes for LS and SHCs were inversely correlated (- 0.418; p < 0.001). Mixed Model Analysis showed that the fixed effect (key predictors of the study) of SHCs index (p < 0.001) and the positive interaction between SHCs index and treatment (p = 0.002) were significant determinants of LS. CONCLUSION: Persons with SCI across the world are more likely to perceive better LS if they experience fewer SHCs and receive treatment for SHCs, in comparison to those who do not. Prevention and treatment of SHCs following SCI should be a high priority in order to improve the lived experience and enhance LS.

Pain and pain management experiences following spinal cord injury - a mixed methods study of Australian community-dwelling adults.

PURPOSE: There is a high prevalence of persistent pain following SCI yet insights into its impact and the quality of pain care are limited. We aimed to explore, in-depth, the problem of persistent pain in Australian community-dwelling adults with a spinal cord injury (SCI). Our objectives were to investigate (i) how individuals experience persistent pain, (ii) how they experience pain care and (iii) the concordance between clinical practice guidelines for managing pain and reported care practices. METHODS: We conducted a mixed-methods convergent parallel study. Adults with SCI and persistent pain completed a survey (n = 43); a subset of participants completed interviews (n = 10). We analysed the data from each method separately and then integrated the findings. RESULTS: Results indicated that the life impact of persistent pain is variable but it can be more disabling than physical impairments and compound a sense of isolation and despair. Community-based management was reported to predominantly have a pharmacological focus, with occurrences of opioid misuse apparent in the data. Access to expert, comprehensive and individualised care was frequently reported as inadequate. CONCLUSION: While some people with SCI and persistent pain can effectively self-manage their pain, for others the impact on quality of life is profound and complex care needs are commonly unmet.IMPLICATIONS FOR REHABILITATIONPersistent pain is a common consequence of SCI and profoundly impacts quality of life.Complex pain care needs are commonly unmet.Individuals require regular, comprehensive, biopsychosocial assessment.The effectiveness of pain management strategies must be monitored on an ongoing basis.Opportunities for personal self-management support must be available long-term.

Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe design and methods of Australian arm of International Spinal Cord Injury (Aus-InSCI) community survey, reporting on participation rates, potential non-response bias and cohort characteristics. SETTING: Survey of community-dwelling people with SCI at least 12 months post-injury, recruited between March 2018 and January 2019, from state-wide SCI services, a government insurance agency and not-for-profit consumer organisations across four Australian states. METHODS: The Aus-InSCI survey combined data for people with SCI from nine custodians, using secure data-linkage processes, to create a population-based, anonymised dataset. The Aus-InSCI questionnaire comprised 193 questions. Eligibility, response status and participation rates were calculated. Descriptive statistics depict participant characteristics. Logistic regression models were developed for probability of participation, and inverse probability weights generated to assess potential non-response bias. RESULTS: 1579 adults with SCI were recruited, a cooperation rate of 29.4%. Participants were predominantly male (73%), with 50% married. Mean age was 57 years (range 19-94) and average time post-injury 17 years (range 1-73). Paraplegia (61%) and incomplete lesions (68%) were most common. Males were more likely than females to have traumatic injuries (p < 0.0001) and complete lesions (p = 0.0002), and younger age-groups were more likely to have traumatic injuries and tetraplegia (p < 0.0001). Potential non-response bias evaluated using selected outcomes was found to be negligible in the Aus-InSCI cohort. CONCLUSIONS: The Aus-InSCI survey made efforts to maximise coverage, avoid recruitment bias and address non-response bias. The distributed, linked and coded (re-identifiable at each custodian level) 'virtual quasi-registry' data model supports systematic cross-sectional and longitudinal research.

Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey: 3. Drivers of quality of life in people with spinal cord injury.

STUDY DESIGN: Cross-sectional population-based survey for the Australian cohort of the International Spinal Cord Injury (InSCI) Community Survey. OBJECTIVES: To differentiate subgroups of people with spinal cord injury (SCI) who self-report good and poor overall quality of life (QoL) using domains of the International Classification of Functioning (ICF), and to evaluate how these factors contribute to QoL when considered together, while controlling confounders. SETTING: Australian survey data from four state-wide SCI services, one government insurance agency, and three not-for-profit consumer organisations. METHODS: Explanatory factors for QoL were compared between participants reporting poor vs. good QoL. Path models estimated total, direct and mediated contributions from each explanatory factor to QoL ratings after accounting for confounders. RESULTS: Most participants (62%) reported good or very good QoL, 12% reported poor or very poor QoL. When explanatory factors were considered together, the strongest total effects on QoL involved social integration (+0.36 SDs), subjective social position (+0.29), secondary health condition burden (-0.28), activity/participation problem burden (-0.26), day-to-day assistance (-0.26), mental health (+0.18), pain (-0.16), self-efficacy (+0.15), vitality (+0.14) and environmental barriers (-0.11). Effects of social integration, mental health, vitality, self-efficacy, pain and activity/participation problems were partly or wholly direct. CONCLUSION: Opportunities to improve QoL in people with SCI exist at every level of the health system. Virtually all aspects of the ICF framework make a substantive difference to QoL outcomes. Social and psychological factors and ability to complete desired activities have key direct effects and influence effects of secondary health condition burden and environmental barriers.