Outcomes and reflections on a consensus-building workshop for developing a spinal cord injury-related chronic pain research agenda.

Context/ Objective: Chronic pain following spinal cord injury (SCI) is a prevalent secondary health condition that significantly impacts quality of life (QoL). Although growing, the number of available effective pain management approaches for SCI is limited. Recognizing the need to "kick-start" activity on this topic, a consensus-building workshop on developing a research agenda for SCI-related chronic pain was held in 2006 with an expert panel. The present paper describes the processes of the consensus-workshop and its associated outcomes towards advancing the research agenda for SCI-related pain in Canada. A commentary on the current state of knowledge regarding SCI-related pain is also provided. METHODS: Thirty-nine stakeholders (researchers, clinicians, policy-makers, SCI advocates, and people with SCI) attended the consensus-workshop. A modified Delphi approach was employed to gain consensus on identifying the top five SCI pain research priorities for improving QoL post-SCI. As well, project planning along with infrastructure support opportunities were discussed. RESULTS: The top five pain research priorities were: 1) pain management and treatment; 2) measurement tools; 3) health services policy and advocacy; 4) knowledge transfer; and 5) mechanisms of pain. Recommendations related to the priorities and related resources were generated, and pilot work was initiated. CONCLUSIONS: The consensus workshop provided an initial roadmap for research on SCI-related chronic pain, and supported five pilot projects on the identified priorities. Reflections on the current research landscape in Canada and abroad suggest increased activity towards addressing pain post-SCI but evidence-based approaches are still lacking.

Results from 10 Years of a CBT Pain Self-Management Outpatient Program for Complex Chronic Conditions.

Background. Traditional unimodal interventions may be insufficient for treating complex pain, as they do not address cognitive and behavioural contributors to pain. Cognitive Behavioural Therapy (CBT) and physical exercise (PE) are empirically supported treatments that can reduce pain and improve quality of life. Objectives. To examine the outcomes of a pain self-management outpatient program based on CBT and PE at a rehabilitation hospital in Toronto, Ontario. Methods. The pain management group (PMG) consisted of 20 sessions over 10 weeks. The intervention consisted of four components: education, cognitive behavioural skills, exercise, and self-management strategies. Outcome measures included the sensory, affective, and intensity of pain experience, depression, anxiety, pain disability, active and passive coping style, and general health functioning. Results. From 2002 to 2011, 36 PMGs were run. In total, 311 patients entered the program and 214 completed it. Paired t-tests showed significant pre- to posttreatment improvements in all outcomes measured. Patient outcomes did not differ according to the number or type of diagnoses. Both before and after treatment, women reported more active coping than men. Discussion. The PMGs improved pain self-management for patients with complex pain. Future research should use a randomized controlled design to better understand the outcomes of PMGs.

Evaluation of an interdisciplinary program for chronic pain after spinal cord injury.

OBJECTIVE: To assess efficacy of an interdisciplinary pain program adapted for persons with spinal cord injury (SCI) and chronic pain. DESIGN: Prospective cohort. SETTING: University-affiliated rehabilitation hospital. PARTICIPANTS: Twenty-two persons with traumatic or nontraumatic SCI and chronic pain of at least 6 months' duration. METHODS: Subjects participated in an interdisciplinary pain program consisting of biweekly group sessions for 10 consecutive weeks. Sessions incorporated patient education on chronic pain and associated pain mechanisms, cognitive behavioral therapy, self-management strategies (eg, energy conservation, ergonomics, goal setting, stress management, anger management, and coping skills), group discussions and activities, and either exercise or guided relaxation at the end of each session. MAIN OUTCOME MEASURES: Multidimensional Pain Inventory SCI, Coping Inventory of Stressful Situations, Pain Stages of Change Questionnaire, and Life Satisfaction Questionnaire. RESULTS: After participation in an interdisciplinary pain program, persons with SCI and chronic neuropathic pain demonstrated increased involvement in learning and maintenance of coping strategies for chronic pain. Participation also led to less pain interference in daily life and a greater sense of control over one's life. CONCLUSIONS: Participation in an interdisciplinary pain program does not reduce pain severity, but it can help persons with SCI and chronic neuropathic pain cope with pain, lessen interference of pain, and improve their sense of control.

Can administrative claim file review be used to gather physical therapy, occupational therapy, and psychology payment data and functional independence measure scores? Implications for rehabilitation providers in the private health sector.

PURPOSE: Rehabilitation costs for spinal-cord injury (SCI) are increasingly borne by Canada's private health system. Because of poor outcomes, payers are questioning the value of their expenditures, but there is a paucity of data informing analysis of rehabilitation costs and outcomes. This study evaluated the feasibility of using administrative claim file review to extract rehabilitation payment data and functional status for a sample of persons with work-related SCI. METHODS: Researchers reviewed 28 administrative e-claim files for persons who sustained a work-related SCI between 1996 and 2000. Payment data were extracted for physical therapy (PT), occupational therapy (OT), and psychology services. Functional Independence Measure (FIM) scores were targeted as a surrogate measure for functional outcome. Feasibility was tested using an existing approach for evaluating health services data. RESULTS: The process of administrative e-claim file review was not practical for extraction of the targeted data. CONCLUSIONS: While administrative claim files contain some rehabilitation payment and outcome data, in their present form the data are not suitable to inform rehabilitation services research. A new strategy to standardize collection, recording, and sharing of data in the rehabilitation industry should be explored as a means of promoting best practices.

Intersection of participation and environmental factors: a complex interactive process.

The objective was to review contemporary and historical rehabilitation-focused literature on conceptualizations of the environment, broadly defined, and environmental measures. Data sources included historical nonempirical American-based literature from 1935 to the present and descriptive and empirical rehabilitation articles worldwide, retrieved from computerized databases predominantly from past 10 years depicting a participation-environment association. Literature selection required relevance to 3 combined topics: physical disability rehabilitation, participation/community integration, and impact of environmental barriers and facilitators. The ultimate focus was on spinal cord injury for recent literature and measures reviewed. Data extraction was based on author-assessed relevance to both participation and environmental considerations. Nonempirical literature from last three quarters of a century suggests an environmental impact on participation, focusing on "person-environment fit." Recent empirical evidence supports environmental contributions to participation, but the magnitude of the contribution is low. Despite the obvious theoretic impact of the environment, scientific demonstration of environmental contribution to participation restriction or facilitation has yet to be achieved. Participation-environment interaction could be illustrated better by (1) taking into account critical elements in environmental measures (eg, comprehensiveness of approach to environment, scales describing spectrum of environmental influence, subjective vs objective perspectives), (2) addressing the concept of participation in a dimension-specific approach, and (3) avoiding environmental features in construction of participation measures.

Family caregivers' support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers.

There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

Development and preliminary evaluation of a structured family system intervention for adolescents with brain injury and their families.

PRIMARY OBJECTIVE: To develop and conduct a preliminary evaluation of a manualized family system intervention for adolescents with acquired brain injury (ABI). RESEARCH DESIGN: Descriptive/exploratory design using mixed methods: modified-Delphi technique, self-administered questionnaires and semi-structured interviews. METHODS AND PROCEDURES: Topic modules and content areas for the adolescent version (BIFI-A) were developed, building on topic areas from the empirically-based Brain Injury Family Intervention (BIFI) for adults. Eight adolescents with ABI, their families and three clinicians who implemented the BIFI-A participated in evaluation of the BIFI-A. Evaluation data were obtained from all participants at the end of each session and post-intervention. Content validity of the revised version was formally evaluated. MAIN OUTCOMES AND RESULTS: A seven-session curriculum, focusing on education, skill building and emotional support, was developed and tested. Clinical utility evaluation survey results indicated 81-89% mean agreement, with positive statements rating helpfulness, importance, relevance, and satisfaction with the BIFI-A. Ninety per cent of adolescent, family and clinician participants said they would recommend the intervention to families of adolescents with an ABI. Survey and qualitative findings from families and test clinicians were used to refine the BIFI-A into a 12-session curriculum. CONCLUSIONS: The findings provide evidence that BIFI-A is a promising family system intervention. Additional research is needed to determine its benefits.

Secondary health complications in an aging Canadian spinal cord injury sample.

OBJECTIVES: This study describes self-reported incidence of secondary health complications (SHCs) and their associations with age, years postinjury (YPI), and impairment among a Canadian spinal cord-injured (SCI) cohort. DESIGN: Cross-sectional telephone survey methods were used to collect data on (1) sociodemographics, (2) impairment, (3) health status, and (4) self-reported SHCs on 781 adults >or=1 yr post-SCI living in Ontario, Canada. RESULTS: Logistic regression analyses were used to determine associations between self-reported incidences of SHCs with the following covariates: (1) age, (2) YPI, and (3) impairment. The odds ratios for cardiac complications, high blood pressure (HBP), and respiratory complications increased per year with age, whereas autonomic dysreflexia (AD), bladder infections, heterotopic ossification, psychological distress, and drug addiction decreased. The odds ratios for pressure ulcers, AD, and heterotopic ossification increased per YPI, whereas HBP, bowel problems, psychological distress, and depression decreased. Complete injuries were associated with bladder infections, pressure ulcers, and AD. Paraplegia was associated with HBP and bowel problems, and tetraplegia was associated with AD. CONCLUSIONS: The findings provide some clarification on factors associated with the occurrence of SHCs after SCI and are useful for informing health-promotion planners, clinicians, and stakeholders regarding the odds of SHCs with aging or among specific impairment groups.

Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence.

Family caregivers of individuals with acquired brain injury (ABI) and other chronic disabilities typically experience long-term adjustment difficulties within the entire family system. Interventions to assist parents and spouses are rare, and for siblings and offspring even more so. Among the few existing interventions, only a very small number have been evaluated in any scientifically sound manner for effectiveness in alleviating stress and burden. A highly targeted literature search of family caregiver intervention studies identified 31 articles, only four of which were in brain injury, which met specific inclusion criteria. Randomized controlled trial studies of six types of family caregiver interventions were systematically assessed for their quality of design and evidence of effectiveness. The results revealed a body of literature lacking in methodological rigor. At present there is no strong research evidence supporting any specific intervention method for family caregivers of individuals with ABI or any of the other chronic condition groups surveyed, although an abundance of anecdotal, descriptive, and quasi-experimental support exists in the rehabilitation literature. This conclusion points to the need for launching new pilot studies and rigorous evaluations of caregiver intervention effectiveness, some of which are now emerging or in process in several locations across the United States.

Long-term adjustment and community reintegration following spinal cord injury.

This paper presents the results of a 2-year mixed methodology (quantitative and qualitative) study examining the reintegration and quality of life of community-residing adults with spinal cord injury (SCI). A convenience sample of 100 individuals with SCI completed three questionnaires for the quantitative study phase. A self-selected subsample of 34 of the participants then attended qualitative focus groups to further explore adjustment to living in the community after SCI. The results revealed that locus of control is crucial to subjective quality of life, productivity status, satisfaction with performance of daily activities and satisfaction with community integration. Respondents confirmed that substantial adjustments are required after SCI, and that these can be aided through education, involvement in productive activity and participation in social and leisure activities. A dominant finding was that social support and peer mentoring were invaluable. Stable health and appropriate pain management were crucial to subjective satisfaction with community integration, yet for many of the respondents these were elusive. Although the participants valued the rehabilitation process, they felt that "the system" was not client-centred and that the timing of services and information was not always relevant to individual needs. The clinical and practical implications of these results are discussed.

A comparison of independent living outcomes following traumatic brain injury and spinal cord injury.

This study compares independent living outcomes in persons with traumatic brain injury (TBI) and spinal cord injury (SCI). Both injuries represent life-altering events that are known to have a negative impact on independent living and are predominantly experienced by members of the same demographic group. However, the types of resultant impairments and disabilities experienced by the two populations differ substantially. The TBI participants were recruited consecutively from Canada's largest tertiary care trauma centre and followed prospectively for four years. The SCI participants were recruited via a mailed survey to members of a provincial branch of the Canadian Paraplegic Association. Independent living outcomes were measured using DeJong and Hughes' (1982) classification system of productivity status, the Reintegration to Normal Living Index, and questions on assistance from environmental supports in the form of wheelchair use and paid/unpaid personal assistance. The TBI group was found to be significantly more productive, have higher levels of satisfaction with their current experience of community integration, and use fewer environmental supports than their SCI counterparts (P