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.

Moving from Interest to Engagement-Understanding the Research Capacity Building Needs of Rehabilitation Doctors.

INTRODUCTION: Doctors working in rehabilitation settings have specialized clinical skills and experience, but research activity may be constrained by time pressures and inadequate current skills. This means missed opportunities to contribute to the evidence-base for better clinical practice and outcomes for people living with disabling, chronic complex conditions. This research aimed to understand rehabilitation doctors' research needs, experience, and aspirations to enable future training initiatives that are tailored to their practice context. METHODS: This exploratory sequential mixed-method study comprised a survey followed by focus groups. Rehabilitation doctors from three health services in south-east Queensland, Australia completed an online survey incorporating the Research Spider to explore their research experience, confidence, interest, opportunity, and intent. Focus groups explored the survey results and participants' views regarding strategies to build research capacity. RESULTS: The major findings were the gap between high research interest and low experience, confidence and opportunity; and fundamental research skills were identified as priority training topics. These findings support previous research. However, rehabilitation doctors may also have a self-expectation that, as competent clinicians, they should necessarily also be research-competent, and hold misperceptions regarding the shared nature of health services research. DISCUSSION: Protected time and funding may enhance engagement with research to generate specialty-relevant evidence for practice. To this end, a research capacity building initiative in the form of a series of self-directed learning packages has been developed and implemented. A tailored workshop to strengthen rehabilitation doctors' research skills and engagement has also been developed for implementation.

A longitudinal analysis of resting energy expenditure and body composition in people with spinal cord injury undergoing surgical repair of pressure injuries: a pilot study.

BACKGROUND: Data informing energy needs of people with spinal cord injury (SCI) and pressure injuries are scarce, the impact of surgical repair unknown, and the role of body composition in healing unexplored. The study aims were to investigate resting energy expenditure (REE) over the course of pressure injury surgical repair, compare with available energy prediction equations, and explore associations between body composition and wound healing. METHODS: Indirect calorimetry measured REE pre-surgery, post-surgery, at suture removal and hospital discharge. A clinically significant change was defined as +/-10% difference from pre-surgery. Eight SCI-specific energy prediction equations were compared to pre-surgery REE. Wound breakdown (Yes/No), weight, waist circumference (WC), and body composition (fat mass [FM], fat-free mass [FFM], bioimpedance spectroscopy) were measured. RESULTS: Twenty people underwent pressure injury surgical repair (95% male, mean age 56 ± 12 years, 70% paraplegia). Between pre-surgery and discharge, mean REE increased (+118 kcal/d, p = 0.005), but with <10% change at any timepoint. An energy prediction equation incorporating FFM showed greatest agreement (rc = 0.779, 95% CI: 0.437, 0.924). Those with wound breakdown (65%) had a higher weight (12.7 kg, 95% CI: -4.0, 29.3), WC (17.8 cm, 95% CI: -5.1, 40.7), and FM % (36.0% [IQR 31.8, 40.2] vs 26.0% [IQR 15.6, 41.3]) than those without wound breakdown, although statistical significance was not reached. CONCLUSION: The presence of pressure injuries and subsequent surgical repair did not impact REE and energy prediction equations incorporating FFM performed best. While not statistically significant, clinically important differences in body composition were observed in those with wound breakdown.

Planning with care complexity: Factors related to discharge delays of hospitalised people with disability.

Planning for discharge and supports beyond hospital for people with disability in Australia involves negotiation of complex care systems. The aims of this study were to examine how the individualised support pathway of the National Disability Insurance Scheme (NDIS) functioned for admitted people with disability who required funded support to leave hospital; and to explore the factors indicative of increased care complexity associated with delays. Retrospective chart reviews of people with disability were conducted. Data on 198 eligible patients were extracted, including NDIS plan approval and plan implementation timeframes and discharge delay. Participants' median age was 52 years (interquartile range = 41-59). The most common disability type was spinal cord injury (41%). The median NDIS plan approval and implementation timeframes were 89 days (63-123) and 39 days (8-131), respectively, and most participants (72%) experienced a delayed discharge. A longer plan implementation timeframe was associated with higher odds of a delay in discharge (OR = 3.41, 95% credible interval = 1.56, 7.11). We did not find any evidence that plan approval timeframe, or any other variable indicative of increased care complexity, was associated with discharge delays. Our findings suggest that a delayed discharge will likely be the reality for people with disability who require funded supports to leave hospital. They also suggest that NDIS plan implementation is a major challenge and a focus for policy and practice improvements. To target solutions, further research should focus on the interactions and negotiations of the multiple intermediaries involved and resource and structural impediments to plan implementation.

The Effect of Health Service Use, Unmet Need, and Service Obstacles on Quality of Life and Psychological Well-Being in the First Year After Discharge From Spinal Cord Injury Rehabilitation.

OBJECTIVE: This study examined the effects of health and rehabilitation service use, unmet need for services, and service obstacles on health-related quality of life (HR QoL) and psychological well-being after discharge from spinal cord injury (SCI) rehabilitation. DESIGN: Prospective cohort study, with participants followed up at 6 and/or 12 months after discharge from SCI inpatient rehabilitation. SETTING: Community setting. PARTICIPANTS: People with SCI (N=55; mean age 51y; 76.4% men; 61.8% traumatic injury; mean length of stay 137d). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Service Usage Scale, Service Obstacles Scale, the EuroQol-5D, and the Depression Anxiety and Stress Scale short form. Eight predictors of outcome were considered: service use (ie, use of general practitioner, medical specialist, nursing, and allied health, and rehospitalization), unmet need, and service obstacles (ie, finances and transport). Possibly important predictors of each outcome were identified via penalized regression, and a final model was fit using Bayesian hierarchical regression with a Gaussian or zero-inflated Poisson response distribution. RESULTS: Financial obstacles were associated with a poorer HR QoL (ß [95% credible interval]= -0.095 [-0.166 to -0.027]) and higher anxiety (odds ratio, OR [95% credible interval]=1.63 [1.16-2.23]). Rehospitalization was associated with a lower EuroQol visual analog scale (ß= -11.2 [-19.7 to -2.5]) and, interestingly, lower anxiety (OR=1.63 [1.16-2.23]). Use of allied health was associated with higher anxiety (OR=2.48 [1.42-4.44]). CONCLUSION: The varying degrees of financial hardship experienced after injury with complex rehabilitation needs requires investigation, as does the interactive effects of service use, unmet need, and service obstacles on outcomes like QoL and psychological well-being.

Positive airway pressure for sleep-disordered breathing in acute quadriplegia: a randomised controlled trial.

RATIONALE: Highly prevalent and severe sleep-disordered breathing caused by acute cervical spinal cord injury (quadriplegia) is associated with neurocognitive dysfunction and sleepiness and is likely to impair rehabilitation. OBJECTIVE: To determine whether 3 months of autotitrating CPAP would improve neurocognitive function, sleepiness, quality of life, anxiety and depression more than usual care in acute quadriplegia. METHODS AND MEASUREMENTS: Multinational, randomised controlled trial (11 centres) from July 2009 to October 2015. The primary outcome was neurocognitive (attention and information processing as measure with the Paced Auditory Serial Addition Task). Daytime sleepiness (Karolinska Sleepiness Scale) was a priori identified as the most important secondary outcome. MAIN RESULTS: 1810 incident cases were screened. 332 underwent full, portable polysomnography, 273 of whom had an apnoea hypopnoea index greater than 10. 160 tolerated at least 4 hours of CPAP during a 3-day run-in and were randomised. 149 participants (134 men, age 46±34 years, 81±57 days postinjury) completed the trial. CPAP use averaged 2.9±2.3 hours per night with 21% fully 'adherent' (at least 4 hours use on 5 days per week). Intention-to-treat analyses revealed no significant differences between groups in the Paced Auditory Serial Addition Task (mean improvement of 2.28, 95% CI -7.09 to 11.6; p=0.63). Controlling for premorbid intelligence, age and obstructive sleep apnoea severity (group effect -1.15, 95% CI -10 to 7.7) did not alter this finding. Sleepiness was significantly improved by CPAP on intention-to-treat analysis (mean difference -1.26, 95% CI -2.2 to -0.32; p=0.01). CONCLUSION: CPAP did not improve Paced Auditory Serial Addition Task scores but significantly reduced sleepiness after acute quadriplegia. TRIAL REGISTRATION NUMBER: ACTRN12605000799651.

Exercise and sports science Australia (ESSA) position statement on exercise and spinal cord injury.

Traumatic spinal cord injury (SCI) may result in tetraplegia (motor and/or sensory nervous system impairment of the arms, trunk and legs) or paraplegia (motor and/or sensory impairment of the trunk and/or legs only). The adverse effects of SCI on health, fitness and functioning are frequently compounded by profoundly sedentary behaviour. People with paraplegia (PP) and tetraplegia (TP) have reduced exercise capacity due to paralysis/paresis and reduced exercising stroke volume. TP often further reduces exercise capacity due to lower maximum heart-rate and respiratory function. There is strong, consistent evidence that exercise can improve cardiorespiratory fitness and muscular strength in people with SCI. There is emerging evidence for a range of other exercise benefits, including reduced risk of cardio-metabolic disease, depression and shoulder pain, as well as improved respiratory function, quality-of-life and functional independence. Exercise recommendations for people with SCI are: ≥30min of moderate aerobic exercise on ≥5d/week or ≥20min of vigorous aerobic ≥3d/week; strength training on ≥2d/week, including scapula stabilisers and posterior shoulder girdle; and ≥2d/week flexibility training, including shoulder internal and external rotators. These recommendations may be aspirational for profoundly inactive clients and stratification into "beginning", "intermediate" and "advanced" will assist application of the recommendations in clinical practice. Flexibility exercise is recommended to preserve upper limb function but may not prevent contracture. For people with TP, Rating of Perceived Exertion may provide a more valid indication of exercise intensity than heart rate. The safety and effectiveness of exercise interventions can be enhanced by initial screening for autonomic dysreflexia, orthostatic hypotension, exercise-induced hypotension, thermoregulatory dysfunction, pressure sores, spasticity and pain.