An evaluation of the International Standards to Document Remaining Autonomic Function after Spinal Cord Injury: input from the international community.

STUDY DESIGN: Interactive workshops with a presurvey-postsurvey. OBJECTIVES: To describe a series of workshops held at international meetings to inform the spinal cord injury (SCI) community about the International Standards to Document Remaining Autonomic Function after Spinal Cord Injury (ISAFSCI) and to obtain feedback on both the workshop and the ISAFSCI assessment. SETTING: Three international conferences of SCI practitioners in Toronto, Las Vegas and Vancouver held between 2012 and 2013. METHODS: The workshops included an overview of the ISAFSCI, sharing experiences using it in clinical practice and interactive cases illustrating how to complete the scoring. A presurvey-postsurvey was administered to obtain feedback on the workshops and the ISAFSCI assessment. RESULTS: One hundred and fourteen participants completed the workshop surveys and 96% (109/114) completed both presurvey and postsurvey. Prior to the workshop, 41% (47/114) of those who had completed the survey reported assessing autonomic function in their practice, and of those, 53% (25/47) reported using the ISAFSCI. After the workshop, 74% (84/114) of participants reported that the case studies were helpful, and 57% (65/114) reported that they wanted to start or continue to use the ISAFSCI in their clinical practice. Suggestions for improving the ISAFSCI included providing further areas to consider when performing the assessment, addressing ambiguity of terms and reporting foreseeable implementation challenges. CONCLUSION: Results from this workshop suggest that more work is needed to inform the SCI community on the ISAFSCI assessment and to further clarify its language. Results from this study will inform future revisions to the ISAFSCI.

The course of fatigue after acute spinal cord injury.

STUDY DESIGN: Prospective cohort study. OBJECTIVES: To determine the prevalence and course of fatigue following acute spinal cord injury (SCI) during rehabilitation and after discharge. SETTING: Tertiary spinal cord rehabilitation facility. METHODS: Fifty-two patients with traumatic SCI were assessed after admission to rehabilitation and followed until 6-months post discharge into the community. Fatigue was measured using the Fatigue Severity Scale (FSS) and the Modified Fatigue Impact Scale for Spinal Cord Injury (MFIS-SCI) at admission, discharge and 6 months after discharge. Clinically significant fatigue was defined as FSS scores ⩾4 or MFIS-SCI scores ⩾24.5. RESULTS: The mean (s.d.) age of our mainly male (78.8%) sample was 46.3 (17.8) years of age. Half had cervical and 61.6% had complete injuries. Mean (s.d.) FSS scores were 3.7 (1.6) at baseline, 3.4 (1.5) at discharge and 3.7 (1.7) post discharge. Mean (s.d.) MFIS-SCI scores were 24.4 (16.1) at baseline, 23.4 (16.3) at discharge and 27.8 (17.5) post discharge. Fatigue on the FSS was present in 51.9% at baseline, 38.3% at discharge and 48.1% post discharge. Fatigue on the MFIS-SCI was present in 44.2% at baseline, 44.7% at discharge and 51.9% post discharge. There was no relationship between fatigue and injury level or completeness. CONCLUSIONS: Fatigue is common in SCI patients admitted to rehabilitation. Fatigue remained stable during rehabilitation and after discharge into the community. Clinicians should consider early screening for fatigue and interventions to reduce the consequences of fatigue in people with SCI. SPONSORSHIP: The British Columbia Medical Services Foundation funded our study.

The CanPain SCI Clinical Practice Guidelines for Rehabilitation Management of Neuropathic Pain after Spinal Cord: introduction, methodology and recommendation overview

"STUDY DESIGN: Clinical practice guidelines. OBJECTIVES: The objective was to develop the first Canadian clinical practice guidelines for the management of neuropathic pain in people with spinal cord injury (SCI). SETTING: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. METHODS: The guidelines were developed in accordance with the Appraisal of Guidelines for Research and Evaluation II tool. A Steering Committee and Working Group reviewed the relevant evidence on neuropathic pain management (encompassing screening and diagnosis, treatment and models of care) after SCI. The quality of evidence was scored using Grading of Recommendations Assessment, Development and Evaluation (GRADE). A consensus process was followed to achieve agreement on recommendations and clinical considerations. RESULTS: The Working Group developed 12 recommendations for screening and diagnosis, 12 recommendations for treatment and 5 recommendations for models of care. Important clinical considerations accompany each recommendation. CONCLUSIONS: The Working Group recommendations for the management of neuropathic pain after SCI should be used to inform practice."

The CanPain SCI Clinical Practice Guidelines for Rehabilitation Management of Neuropathic Pain after Spinal Cord: introduction, methodology and recommendation overview.

STUDY DESIGN: Clinical practice guidelines. OBJECTIVES: The objective was to develop the first Canadian clinical practice guidelines for the management of neuropathic pain in people with spinal cord injury (SCI). SETTING: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. METHODS: The guidelines were developed in accordance with the Appraisal of Guidelines for Research and Evaluation II tool. A Steering Committee and Working Group reviewed the relevant evidence on neuropathic pain management (encompassing screening and diagnosis, treatment and models of care) after SCI. The quality of evidence was scored using Grading of Recommendations Assessment, Development and Evaluation (GRADE). A consensus process was followed to achieve agreement on recommendations and clinical considerations. RESULTS: The Working Group developed 12 recommendations for screening and diagnosis, 12 recommendations for treatment and 5 recommendations for models of care. Important clinical considerations accompany each recommendation. CONCLUSIONS: The Working Group recommendations for the management of neuropathic pain after SCI should be used to inform practice.

The CanPain SCI Clinical Practice Guidelines for Rehabilitation Management of Neuropathic Pain after Spinal Cord: Recommendations for treatment.

STUDY DESIGN: Clinical practice guidelines. OBJECTIVES: To develop the first Canadian clinical practice guidelines for treatment of neuropathic pain in people with spinal cord injury (SCI). SETTING: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. METHODS: The CanPainSCI Working Group reviewed the evidence for different treatment options and achieved consensus. The Working Group then developed clinical considerations for each recommendation. Recommendations for research are also included. RESULTS: Twelve recommendations were developed for the management of neuropathic pain after SCI. The recommendations address both pharmacologic and nonpharmacologic treatment modalities. CONCLUSIONS: An expert Working Group developed recommendations for the treatment of neuropathic pain after SCI that should be used to inform practice.

The CanPain SCI Clinical Practice Guideline for Rehabilitation Management of Neuropathic Pain after Spinal Cord: recommendations for model systems of care.

STUDY DESIGN: Clinical practice guidelines. OBJECTIVES: The project objectives were to develop the first Canadian recommendations on a model of care for the management of at- and below-level neuropathic pain in people with spinal cord injury (SCI). SETTING: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. METHODS: On the basis of a review of the Accreditation Canada standards, the Steering Committee developed questions to guide the CanPainSCI Working Group when developing the recommendations. The Working Group agreed on recommendations through a consensus process. RESULTS: The Working Group developed five recommendations for the organization of neuropathic pain rehabilitation care in people with SCI. CONCLUSIONS: The Working Group recommendations for a model of care for at- and below-level neuropathic pain after SCI should be used to inform clinical practice.

The CanPain SCI Clinical Practice Guidelines for Rehabilitation Management of Neuropathic Pain after Spinal Cord: screening and diagnosis recommendations.

STUDY DESIGN: Clinical practice guidelines. OBJECTIVES: To develop the first Canadian clinical practice guidelines for screening and diagnosis of neuropathic pain in people with spinal cord injury (SCI). SETTING: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. METHODS: The CanPainSCI Working Group reviewed evidence to address clinical questions regarding screening and diagnosis of neuropathic pain after SCI. A consensus process was followed to achieve agreement on recommendations and clinical considerations. RESULTS: Twelve recommendations, based on expert consensus, were developed for the screening and diagnosis of neuropathic pain after SCI. The recommendations address methods for assessment, documentation tools, team member accountability, frequency of screening and considerations for diagnostic investigation. Important clinical considerations accompany each recommendation. CONCLUSIONS: The expert Working Group developed recommendations for the screening and diagnosis of neuropathic pain after SCI that should be used to inform practice.

The relationship between fatigue and participation in spinal cord injury.

STUDY DESIGN: Cross-sectional national survey. OBJECTIVES: To explore the association between fatigue and community participation frequency and provide an adjusted model of the relationship including important covariates. SETTING: Canada; Community. METHODS: Data were obtained from the Rick Hansen Spinal Cord Injury Registry Community Survey. We used multi-variable regression analyses with hierarchical backward elimination, including variable specification, interaction assessment and confounding assessment. Variables with statistically significant correlation with the primary-dependent variable (participation) were included for modeling. RESULTS: The crude model of association between fatigue and participation accounted for 7.2% of the variance in participation scores. The full model with all a priori selected variables accounted for 25.1% of variance in participation scores. The adjusted model, including the identified confounders (pain, depressive mood, comorbidities and level of injury), accounted for 21.1% of variance in participation scores. Depressive mood variables had the highest standardized beta coefficients, reflecting the largest contribution to this model. CONCLUSION: Fatigue has a statistically significant negative association with participation for individuals with spinal cord injury, when controlling for pain, depressive mood, comorbidities and level of injury. Multifaceted clinical interventions and research addressing fatigue, pain and depressive symptoms are warranted.

International survey of perceived barriers to admission and discharge from spinal cord injury rehabilitation units.

STUDY DESIGN: Survey. OBJECTIVES: To describe and compare perceived barriers with patient flow in spinal rehabilitation units (SRUs). SETTING: International. Ten SRUs (Australia, Canada, India, Ireland, Italy, Netherlands, Pakistan, Switzerland, UK and USA) that admit both traumatic and non-traumatic spinal cord injury patients. METHODS: Survey completed between December 2010 and February 2013 on perception of barriers for admission into and discharge from SRUs. Opinion was sought from the participants regarding the utility of collecting data on the timeliness of access to SRUs and occurrence of discharge barriers for benchmarking and quality improvement purposes. RESULTS: The perceived barriers in accessing SRUs ranged from no access problem to a severe access problem (no access problems n=3; minor access problems n=3; moderate access problems n=2; severe access problem n=1 and extreme n=1). Most units (n=9/10) agreed that collecting data on timeliness of access to SRUs for acute hospital patients may help improve patient outcomes and health system processes by providing information for benchmarking and quality improvement purposes. All units reported perceived barriers to discharge from SRUs. Compared with admission barriers, a greater perception of barriers to discharge was reported (minor problem n=3; moderate problem n=3; severe problem n=3; and extreme n=1). All units agreed that collecting data on barriers to discharge from SRU may help improve patient outcomes and system processes. CONCLUSIONS: Perceived barriers to patient flow in SRUs are reported in many countries. Projects to identify and minimise the occurrence and impact of admission and discharge barriers could increase access to rehabilitation and improve the rehabilitation outcomes for patients.

International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury.

STUDY DESIGN: Survey. OBJECTIVES: Describe and compare the organisation and delivery of rehabilitation services and systems of care for patients with spinal cord injury (SCI). SETTING: International. Nine spinal rehabilitation units that manage traumatic SCI and non-traumatic SCI (NTSCI) patients. METHODS: Survey based on clinical expertise and literature review. Completed between November 2010 and April 2011. RESULTS: All units reported public/government funding. Additional funding sources included compensation schemes, private insurance and self funding. Six units had formal attachment to an acute SCI unit. Five units (Italy, Ireland, India, Pakistan and Switzerland) provided a national service; two units (the Netherlands and USA) provided regional and two units (Australia and Canada) provided state/provincial services. The median number of SCI rehabilitation beds was 23 (interquartile range=16-30). All units admitted both traumatic SCI and NTSCI patients. The median proportion of patients admitted who had traumatic SCI was 45% (IQR 20-48%) and 40% (IQR 30-42%) had NTSCI. The rehabilitation team in all centres determined patient readiness for discharge. There was great variability between units in the availability of SCI speciality services, ancillary services and staff/patient ratios. CONCLUSION: There was a wide range of differences in the organisation, systems of care and services available for patients with SCI in rehabilitation units in different countries. Understanding these differences is important when comparing patient outcomes from different settings. A standardised collection of these system variables should be considered as part of future studies and could be included in the ISCoS data set project.

Feasibility and efficacy of upper limb robotic rehabilitation in a subacute cervical spinal cord injury population.

STUDY DESIGN: Multi-center pilot study. OBJECTIVES: To investigate the use of an upper limb robotic rehabilitation device (Armeo Spring, Hocoma AG, Switzerland) in a subacute cervical spinal cord injury (SCI) population. SETTING: Two Canadian inpatient rehabilitation centers. METHODS: Twelve subjects (motor level C4-C6, ASIA Impairment Scale A-D) completed the training, which consisted of 16.1±4.6 sessions over 5.2±1.4 weeks. Two types of outcomes were recorded: (1) feasibility of incorporating the device into an inpatient rehabilitation program (compliance with training schedule, reduction in therapist time required and subject questionnaires) and (2) efficacy of the robotic rehabilitation for improving functional outcomes (Graded and Redefined Assessment of Strength, Sensibility and Prehension (GRASSP), action research arm test, grip dynamometry and range of motion). RESULTS: By the end of the training period, the robot-assisted training was shown to require active therapist involvement for 25±11% (mean±s.d.) of the total session time. In the group of all subjects and in a subgroup composed of motor-incomplete subjects, no statistically significant differences were found between intervention and control limbs for any of the outcome measures. In a subgroup of subjects with partial hand function at baseline, the GRASSP-Sensibility component showed a statistically significant increase (6.0±1.6 (mean±s.e.m.) point increase between baseline and discharge for the intervention limbs versus 1.9±0.9 points for the control limbs). CONCLUSION: The pilot results suggest that individuals with some preserved hand function after SCI may be better candidates for rehabilitation training using the Armeo Spring device.

The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry.

STUDY DESIGN: Development of a prospective patient registry. OBJECTIVE: To develop a patient registry for persons with traumatic spinal cord injuries (SCI), which can be used to answer research questions and improve patient outcomes. SETTING: Nine provinces in Canada. METHODS: The Rick Hansen Spinal Cord Injury Registry (RHSCIR) is part of the Translational Research Program of the Rick Hansen Institute. The launch of RHSCIR in 2004 heralded the initiation of the first nation-wide SCI patient registry within Canada. Currently, RHSCIR is being implemented in 14 cities located in 9 provinces, and there are over 1500 individuals who have sustained an acute traumatic SCI registered to date. Data are captured from the pre-hospital, acute and rehabilitation phases of care, and participants are followed in the community at 1, 2, 5 and then every 5 years post-injury. RESULTS: During the development of RHSCIR, there were many challenges that were overcome in selecting data elements, establishing the governance structure, and creating a patient privacy and confidentiality framework across multiple provincial jurisdictions. The benefits of implementing a national registry are now being realized. The collection of an internationally standardized set of clinical information is helping inform clinicians of beneficial interventions and encouraging a shift towards evidence-based practices. Furthermore, through RHSCIR, a network is forming amongst SCI clinicians and researchers, which is fostering new collaborations and the launch of multi-center clinical trials. CONCLUSIONS: For networks that are establishing SCI registries, the experiences and lessons learned in the development of RHSCIR may provide useful insights and guidance.

Medication use is associated with fatigue in a sample of community-living individuals who have a spinal cord injury: a chart review.

OBJECTIVES: To investigate the relationship between medications known to cause fatigue in spinal cord injury (SCI) and fatigue severity and to describe the pattern of prescription of these medications. STUDY DESIGN: Retrospective chart review. SETTING: GF Strong Rehabilitation Centre, Vancouver, British Columbia, Canada. METHODS: Medical charts of 136 individuals admitted to the GF Strong Outpatient SCI Program between December 2004 and May 2007 were reviewed. Data collected included information on medications, clinical and demographic characteristics and Fatigue Severity Scale (FSS) scores. Multiple linear regression techniques were used to analyse the data. RESULTS: Fifty-two percent of the subjects had clinically relevant fatigue. As a group, the subjects were taking 147 different medications; 41/147 medications were identified as causing fatigue. The two most commonly prescribed categories of medications were antispasticity medications (75 subjects) and analgesic medications (61 subjects). Although several variables were found to contribute to the FSS scores including the use of fatigue-causing medications, the presence of pain (7.6% of variance) and the use of fatigue-causing analgesics (4.2% of variance) explained the most variance in the scores. CONCLUSION: Fatigue is prevalent in outpatients with SCI. Fatigue-causing medications contribute to a higher FSS score. Clinicians treating persons with SCI should be aware that fatigue is a common and significant problem. Clinicians should be aware that fatigue may be exacerbated by the use of medication and should enquire about the effects of medication on fatigue when assessing and prescribing new medications.

Orthostatic hypotension in the first month following acute spinal cord injury.

STUDY DESIGN: Retrospective data analysis. OBJECTIVES: To determine prevalence of orthostatic hypotension (OH) in patients with spinal cord injury (SCI) during the acute rehabilitation period. SETTING: Quaternary care spinal unit, Vancouver General Hospital, British Columbia, Canada. METHODS: Eighty-nine patients with acute SCI stratified by neurological level (cervical, 55 (62%); upper thoracic, 12 (13%); lower thoracic, 22 (25%)), and graded by American Spinal Injury Association standards. Non-invasive measurement of systolic and diastolic blood pressure and heart rate were made at baseline and 3 min following an orthostatic challenge test administered during the first month after SCI. RESULTS: Patients with cervical or upper thoracic motor complete SCI more frequently experienced OH (P<0.01). OH persisted during the first month following SCI in 74% of cervical and only 20% of upper thoracic motor complete SCI patients. CONCLUSION: Patients with cervical and upper thoracic motor complete SCI are more likely to experience persistent OH than those with lower level or motor incomplete SCI during the first month of rehabilitation.

Clinical correlates of fatigue in spinal cord injury.

STUDY DESIGN: Retrospective chart review. OBJECTIVES: To determine the prevalence of fatigue in an outpatient spinal cord injury population and to examine the clinical variables contributing to that fatigue. SETTING: GF Strong Rehabilitation Centre, Vancouver, British Columbia, Canada. METHODS: Medical charts of 76 individuals admitted to the GF Strong Outpatient SCI Program between December 2004 and December 2005 were reviewed. Data collected included information on clinical characteristics, demographics and Fatigue Severity Scale (FSS) scores. Multivariable analysis was completed to determine the independent association between these variables and fatigue severity. RESULTS: A total of 57% (95% confidence interval (CI)=45-67%) of the sample were found to have fatigue severe enough to interfere with function. People that were admitted for medical reasons; had pain, spasticity, incomplete injuries, and/or were on more that one medication with a known side effect of fatigue had significantly higher FSS scores. Multivariable analysis indicated incomplete injury was the only statistically significant predictor of a higher FSS scores; pain approached significance (P=0.07, CI=-0.09, 2.06). Together these variables account for 18% of the variance in FSS scores in this sample. CONCLUSION: Fatigue among individuals with spinal cord injury who are seeking outpatient rehabilitation is very common. The severity of fatigue was greater for individuals with incomplete lesions. Pain was also a potentially important covariate of fatigue. Further research is required to determine what else contributes to fatigue severity beyond these clinical variables as only minimal variance was accounted for in our model.

Measurement properties of the CESD scale among individuals with spinal cord injury.

BACKGROUND: Depression is common after spinal cord injury (SCI), yet it can be difficult and costly to diagnose. Screening tools such as the Center for Epidemiological Studies Depression scale (CESD) can assist with case identification; however, insufficient knowledge of their measurement properties exists to use them in the SCI population. OBJECTIVES: To assess the reliability and validity of the CESD-20 and the CESD-10. SETTING: Tertiary care centre in Vancouver, British Columbia, Canada. METHODS: A 2-week retest study of 47 individuals with traumatic SCI. Subjects >or=19, who had their SCI for >or=1 year and had American Spinal Injury Association Impairment scale ranking of A or B. Short Form-36 (SF-36) subscales and a visual analogue scale for fatigue (VAS-F) were used to assess validity using Pearson's correlations coefficients. Internal consistency was assessed using Cronbach's alpha, retest reliability was assessed using intraclass correlation coefficients (ICCs) and Bland-Altman plots. Normative data are presented based on key demographic and clinical factors. RESULTS: Cronbach's alpha was 0.91 and 0.86 and retest reliability was ICC=0.87 (95% confidence interval (CI) 0.79-0.93) and ICC=0.85 (95% CI 0.75-0.92) for the CESD-20 and CESD-10, respectively. Minimal bias was evident based on the Bland-Altman plots. The strongest correlations were with outcomes representing mental health (r=-0.71), vitality (r=-0.60) and the VAS-F (r=0.57). The weakest correlation was with the physical function score of the SF-36 (r=-0.37). CONCLUSION: The CESD-20 and CESD-10 are quick and easy to use. This study provides evidence in support of the reliability and validity.

Cross-cultural differences in preference for recovery of mobility among spinal cord injury rehabilitation professionals.

STUDY DESIGN: Direct observation of a constrained consensus-building process in three culturally independent five-person panels of rehabilitation professionals from the US, Italy and Canada. OBJECTIVES: To illustrate cultural differences in belief among rehabilitation professionals about the relative importance of alternative functional goals during spinal cord injury (SCI) rehabilitation. SETTING: Spinal Cord Injury Units in Philadelphia-USA, Rome-Italy and Vancouver-Canada. METHODS: Each of the three panels came to independent consensus about recovery priorities in SCI utilizing the features resource trade-off game. The procedure involves trading imagined levels of independence (resources) across different functional items (features) assuming different stages of recovery. RESULTS: Sphincter management was of primary importance to all three groups. The Italian and Canadian rehabilitation professionals, however, showed preference for walking over wheelchair mobility at lower stages of assumed recovery, whereas the US professionals set wheelchair independence at a higher priority than walking. CONCLUSIONS: These preliminary results suggest cross-cultural recovery priority differences among SCI rehabilitation professionals. These dissimilarities in preference may reflect disparities in values, cultural expectations and health care policies.

Use of prolonged standing for individuals with spinal cord injuries.

BACKGROUND AND PURPOSE: Prolonged standing in people with spinal cord injuries (SCIs) has the potential to affect a number of health-related areas such as reflex activity, joint range of motion, or well-being. The purpose of this study was to document the patterns of use of prolonged standing and their perceived effects in subjects with SCIs. SUBJECTS: The subjects were 152 adults with SCIs (103 male, 49 female; mean age=34 years, SD=8, range=18-55) who returned mailed survey questionnaires. METHODS: A 17-item self-report survey questionnaire was sent to the 463 members of a provincial spinal cord support organization. RESULTS: Survey responses for 26 of the 152 respondents were eliminated from the analysis because they had minimal effects from their injuries and did not need prolonged standing as an extra activity. Of the 126 remaining respondents, 38 respondents (30%) reported that they engaged in prolonged standing for an average of 40 minutes per session, 3 to 4 times a week, as a method to improve or maintain their health. The perceived benefits included improvements in several health-related areas such as well-being, circulation, skin integrity, reflex activity, bowel and bladder function, digestion, sleep, pain, and fatigue. The most common reason that prevented the respondents from standing was the cost of equipment to enable standing. DISCUSSION AND CONCLUSION: Considering the many reported benefits of standing, this activity may be useful for people with SCI. This study identified a number of body systems and functions that may need to be investigated if clinical trials of prolonged standing in people with SCI are undertaken.