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STUDY DESIGN: Secondary analysis of an observational cohort study. OBJECTIVES: To determine if the perceived overall limitation of neuropathic pain on activities (NP limitation) covaries in 26 specific life activities in people with SCI, taking into account the severity of injury. SETTING: Community-based in Canada. METHODS: Secondary analysis of a cohort (N = 1481) was performed using questionnaires to rate NP frequency and limitation on activities as well as participation in 26 life activities. Relative risks (RR) analyses using Poisson regression were used to examine the data. RESULTS: Most participants (N = 1158; 78%) reported living with NP (from once a year to every day). When NP limitation was described as "not at all" or "very little" (N = 394; 34%), there was no statistically significant RR (p > 0.0019), suggesting no additional risk of not participating "as much as wanted" in any of activities compared to participants with no NP. When NP limitation was described as "to some extent" (N = 411; 35%), a significantly higher risk was observed for 5 of the 26 activities (1.34 < RR < 1.62), and for 23 activities with a large range (1.24 < RR < 3.20) when NP limitation was rated as "to a great extent or more" (N = 353; 31%). CONCLUSION: The variation of RR observed across the 26 activities suggests that the NP limitation may not be general but rather related to specific activity characteristics, which should be taken into account when evaluating NP limitations with a specific focus on the life activities being affected.
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Neuralgia , Traumatismos da Medula Espinal , Canadá/epidemiologia , Estudos de Coortes , Humanos , Neuralgia/epidemiologia , Inquéritos e QuestionáriosRESUMO
Background: Community-based spinal cord injury (SCI) associations play a critical role in successful community integration of individuals having experienced an SCI, with knowledge translation being increasingly important for the process. The implementation of a new online peer-mentor training program was perceived as being useful in improving and standardizing training practices for peer mentors across Canada. It was also seen as an opportunity to explore the context, process, and influence of a formal implementation process in SCI community-based associations that are corporate members of SCI Canada with a view to informing future implementation efforts. Objectives: The objectives of this study were to (a) explore the context in which the implementation process will be conducted, (b) identify barriers and facilitators that influence the implementation process, and (c) measure the influence of the implementation process on service delivery. Methods: A sequential cross-sectional design was used with SCI Canada provincial member associations. SCI Canada's purpose is to support collaboration among provincial corporate members. SCI Canada enlisted the participation of several employees from the provincial associations to assess the implementation context using the Evidence-Based Practice Attitude Scale and the Organizational Readiness to Change Assessment and to identify barriers to and facilitators of the implementation of an evidence-based practice through an open-ended questionnaire based on the Consolidated Framework for Implementation Research. A pre-post design was used to evaluate the influence of the implementation process on peer-mentors using the Determinants of Implementation Behavior Questionnaire. Results: Participants reported an overall positive attitude toward evidence-based practice and a positive perception of the organizational readiness to change. The relevance of the practice chosen was a facilitator because peer support is central to the mission of SCI Canada and this type of practice is in line with the organization' culture and values. Equally important, but as an obstacle, is the scarcity of existing resources within the association in general and specifically resources devoted to the implementation of the program. Finally, the implementation process seems to influence half of the implementation determinant types on potential peer mentors. Conclusion: Community-based organizations, such as the provincial association members of SCI Canada, show positive context for the implementation of evidence-based practices. However, successful implementation of online peer-mentor training will require specific consideration of financial and human resources.
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Educação , Mentores/educação , Grupo Associado , Avaliação de Programas e Projetos de Saúde/métodos , Traumatismos da Medula Espinal/reabilitação , Adulto , Idoso , Canadá , Instrução por Computador , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Various types of limitations on community participation are experienced by people with spinal cord injury (SCI). OBJECTIVES: To determine: 1) the perceived influence of six intrinsic/extrinsic factors (i.e. physical impairment, emotional condition, thinking skills, environment, lack of assistance, discrimination) on participation in 26 life activities, 2) if this influence varied based on extent of participation, and 3) if personal or environmental characteristics influenced perceptions. METHODS: Secondary analysis of a cohort (SCI Community Survey, nâ¯=â¯1508) using the SCI Person-Perceived Participation in Daily Activities Questionnaire. Frequency tables, Fisher's exact tests and correspondence analyses. RESULTS: Respectively, 79.6% and 38.5% of respondents perceived that their physical impairment and the natural and/or built environment were the main factors that limited participation across all activities. Considering participation between three groups (no participation; less than wanted; as much as wanted), significant differences (pâ¯<â¯0.001) of perceptions were observed in 65% of the combinations (26 activities x 6 factors). The hypothesis that respondents who did not participate would perceive the highest proportion of limitations was confirmed in 41% of the combinations. Perceived influence of the intrinsic/extrinsic factors on participation was not significantly influenced by other personal or environmental characteristics. CONCLUSION: A majority of people with SCI perceived that their participation is limited by one or more of intrinsic/extrinsic factors. Perceptions regarding which factors influence participation differ between activities and these perceptions appear related to the extent of participation suggesting that those who actively participate could be the most sensitive to limitations in certain activities.
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Atividades Cotidianas/psicologia , Adaptação Psicológica , Pessoas com Deficiência/psicologia , Participação do Paciente/psicologia , Qualidade de Vida/psicologia , Traumatismos da Medula Espinal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosAssuntos
Exercício Físico/psicologia , Atividades de Lazer/psicologia , Dor/psicologia , Satisfação Pessoal , Traumatismos da Medula Espinal/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Percepção da Dor/fisiologia , Qualidade de Vida , Traumatismos da Medula Espinal/complicaçõesRESUMO
OBJECTIVES: To investigate the role of spinal cord injury (SCI) peer mentorship on quality of life (QoL)/participation, and test a self-determination theory model that explains the role of SCI peer mentorship on these outcomes. DESIGN: A static group comparison design. SETTING: Community. PARTICIPANTS: A convenience sample of mentees (individuals receiving peer mentorship) (n=68) and nonmentees (n=63) who had an SCI, were older than 18 years, and spoke either English or French. INTERVENTIONS: Mentees: at least 4 peer mentorship sessions over the past 5 years; nonpeer mentees: 0 or 1 brief introductory session. MAIN OUTCOME MEASURES: QoL (ie, life satisfaction and positive and negative affect), participation (eg, autonomous indoor; family role), and the psychological needs of autonomy, competence, and relatedness. RESULTS: No group differences were found, but years since injury was a moderator indicating that, generally, peer mentees living with SCI for longer (â¼30y) appear to benefit more from peer mentorship interactions compared with nonmentees and mentees living with SCI for approximately 6 years. Competence and relatedness mediated the peer mentorship-outcome relationship for QoL and some participation variables, indicating that peer mentorship predicted competence and relatedness, which in turn were related to the outcomes. CONCLUSIONS: Satisfaction of competence and relatedness needs requires greater attention in SCI peer mentorship. Years since injury modified the relationship between peer mentorship and outcomes, which provided new insights on the role of SCI peer mentorship. Further studies are needed to determine SCI peer mentorship-specific outcomes that are important across the years-since-injury spectrum.
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Tutoria/métodos , Participação do Paciente/psicologia , Grupo Associado , Autonomia Pessoal , Qualidade de Vida/psicologia , Traumatismos da Medula Espinal/psicologia , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Mentores/psicologia , Pessoa de Meia-Idade , Satisfação PessoalRESUMO
STUDY DESIGN: National, multicenter, cross-sectional study. OBJECTIVE: The goal of this study was to provide overall quality of life (QOL) and health utility (HU) values for patients with traumatic spinal cord injury (SCI) stratified by injury level and neurological status. SUMMARY OF BACKGROUND DATA: Traumatic SCI is a leading cause of disability. Varying injury level and severity generate a spectrum of neurological dysfunction and reduction in long-term QOL. METHODS: The Canadian SCI Community Survey was sent to Canadians living in the community after SCI. The impact of demographics, complications, and SCI classification on QOL was assessed using Analysis of variance, multiple linear regressions and ordinal logistic regression analyses. RESULTS: There were 1109 respondents with traumatic SCI. american spinal injury association impairment scale (AIS) grade was reported to be cervical motor complete in 20%, cervical motor incomplete in 28%, thoracolumbar motor complete in 32%, thoracolumbar motor incomplete in 16%, and normal (any level) in 1%. Injury level or AIS grade had no impact on either HU or QOL. The physical component of health-related quality of life (HRQOL) was significantly affected by the neurological level, but not the social or mental components. With a mean health utility score of 0.64â±â0.12, SCI patients living in the community reported having HRQOL similar to patients after total knee arthroplasty or lumbar spinal stenosis decompression. CONCLUSION: QOL or HU measured by generic HRQOL outcome tools should not be used as outcomes to assess the effectiveness of interventions targeting neurological function in traumatic SCI. A disease-specific instrument that captures the nuances specific to spinal cord injury patients is required. LEVEL OF EVIDENCE: 1.
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Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Qualidade de Vida/psicologia , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Canadá/epidemiologia , Vértebras Cervicais/lesões , Estudos Transversais , Feminino , Humanos , Vértebras Lombares/lesões , Masculino , Pessoa de Meia-Idade , Traumatismos da Medula Espinal/diagnóstico , Vértebras Torácicas/lesões , Adulto JovemRESUMO
OBJECTIVE: To analyze relations among injury, demographic, and environmental factors on function, health-related quality of life (HRQoL), and life satisfaction in individuals with traumatic spinal cord injury (SCI). DESIGN: Prospective observational registry cohort study. SETTING: Specialized acute and rehabilitation SCI centers. PARTICIPANTS: Participants (N=340) from the Rick Hansen Spinal Cord Injury Registry (RHSCIR) who were prospectively recruited from 2004 to 2014 were included. The model cohort participants were 79.1% men, with a mean age of 41.6±17.3 years. Of the participants, 34.7% were motor/sensory complete (ASIA Impairment Scale [AIS] grade A). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Path analysis was used to determine relations among SCI severity (AIS grade and anatomic level [cervical/thoracolumbar]), age at injury, education, number of health conditions, functional independence (FIM motor score), HRQoL (Medical Outcomes Study 36-Item Short-Form Health Survey [Version 2] Physical Component Score [PCS] and Mental Component Score [MCS]), and life satisfaction (Life Satisfaction-11 [LiSat-11]). Model fit was assessed using recommended published indices. RESULTS: Goodness of fit of the model was supported by all indices, indicating the model results closely matched the RHSCIR data. Higher age, higher severity injuries, cervical injuries, and more health conditions negatively affected FIM motor score, whereas employment had a positive effect. Higher age, less education, more severe injuries (AIS grades A-C), and more health conditions negatively correlated with PCS (worse physical health). More health conditions were negatively correlated with a lower MCS (worse mental health), however were positively associated with reduced function. Being married and having higher function positively affected Lisat-11, but more health conditions had a negative effect. CONCLUSIONS: Complex interactions and enduring effects of health conditions after SCI have a negative effect on function, HRQoL, and life satisfaction. Modeling relations among these types of concepts will inform clinicians how to positively effect outcomes after SCI (eg, development of screening tools and protocols for managing individuals with traumatic SCI who have multiple health conditions).
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Satisfação Pessoal , Qualidade de Vida , Traumatismos da Medula Espinal/psicologia , Índices de Gravidade do Trauma , Adulto , Avaliação da Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Sistema de Registros , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Physical activity (PA) must be performed regularly to accrue health benefits. However, the majority of manual wheelchair users do not meet PA recommendations. Existing community-based PA programs for manual wheelchair users appear to work, but effect sizes are small and retention is low. Existing PA programs may not fully implement some psychosocial factors that are strongly linked with PA (eg, autonomy). The use of peers and mobile phone technology in the Smartphone Peer PA Counseling (SPPAC) program represents a novel approach to cultivating a PA-supportive environment for manual wheelchair users. OBJECTIVE: The primary objective is to compare change in objective PA between the experimental (SPPAC) and control groups from baseline to postintervention (10 weeks) and follow-up (3 months). Changes in and relationships between subjective PA, wheelchair skills, motivation, self-efficacy (for overcoming barriers to PA for manual wheelchair use), satisfaction of psychological needs for PA, and satisfaction with PA participation will be explored (secondary outcome). Program implementation will be explored (tertiary objective). METHODS: A total of 38 community-living manual wheelchair users (≥18 years) will be recruited in a randomized controlled trial (RCT). Participants in both the control and experimental groups will receive existing PA guidelines. Participants in the experimental group will also receive the SPPAC program: 14 sessions (~30 min) over a 10-week period delivered by a peer trainer using a mobile phone. PA activities will be based on individuals' preferences and goals. Implementation of important theoretical variables will be enforced through a peer-trainer checklist. Outcomes for objective PA (primary) and subjective PA, wheelchair skills, motivation, self-efficacy, satisfaction of psychological needs, and satisfaction with participation will be collected at three time points (baseline, postintervention, follow-up). Multiple imputations will be used to treat missing data. A mixed-model ANCOVA will be conducted, controlling for covariates (primary and secondary objectives). The strength and direction of the relationships between the primary and secondary outcomes will be explored (secondary objective). Descriptive and content analysis will be used to appraise program implementation (tertiary objective). RESULTS: Funding has been obtained from the Craig Neilsen Foundation and the Canadian Disability Participation Project, with additional funds being sought from the Canadian Institute for Health Research and Fonds de Recherche du Québec-Santé. Pilot evaluation of intervention implementation is currently underway, with enrollment anticipated to begin early 2018. CONCLUSIONS: There may be substantial benefits for the SPPAC program including limited burden on health care professionals, decreased barriers (eg. accessibility, transportation), development of peer social supports, and potential cost savings related to physical inactivity. Before conducting a large and expensive multisite RCT within a small heterogeneous population of manual wheelchair users, a pilot study affords a prudent step to establishing an adequate study protocol and implementation strategies. TRIAL REGISTRATION: ClinicalTrials.gov NCT02826707; https://clinicaltrials.gov/ct2/show/NCT02826707 (Archived by WebCite at http://www.webcitation.org/6pqIc14dU).
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OBJECTIVE: To identify and classify quality of life (QoL) tools for assessing the influence of neurogenic bladder after spinal cord injury/disease (SCI). DESIGN: Systematic Review Methods: Medline/Pubmed, CINAHL, and PsycInfo were searched using terms related to SCI, neurogenic bladder and QoL. Studies that assessed the influence neurogenic bladder on QoL (or related construct) in samples consisting of ≥50% individuals with SCI were included. Two independent reviewers screened titles and abstracts of 368 identified references; 118 full-text articles were assessed for eligibility, and 42 studies were included. Two reviewers independently classified outcomes as objective (societal viewpoint) or subjective (patient perspective) using a QoL framework. RESULTS: Ten objective QoL measures were identified, with the Medical Outcomes Short Form (SF-36/SF-12) used most frequently. Fourteen subjective QoL measures were identified; 8 were specific to neurogenic bladder. Psychometric evidence for SCI-specific neurogenic bladder QoL tools was reported for the Quality of Life Index (QLI), Qualiveen, Bladder Complications Scale, Spinal Cord Injury-Quality of Life (SCI-QOL) Bladder Management Difficulties, and the SCI-QOL Bladder Management Difficulties-Short Form. The QLI and Qualiveen showed sensitivity to neurogenic bladder in experimental designs. CONCLUSION: Several objective and subjective tools exist to assess the influence of neurogenic bladder on QoL in SCI. The QLI and Qualiveen, both subjective tools, were the only validated SCI-specific tools that showed sensitivity to neurogenic bladder. Further validation of existing subjective SCI-specific outcomes is needed. Research to validate objective measures of QoL would be useful for informing practice and policy related to resource allocation for bladder care post-SCI.
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Qualidade de Vida , Traumatismos da Medula Espinal/complicações , Bexiga Urinaria Neurogênica/patologia , Humanos , Psicometria , Bexiga Urinaria Neurogênica/etiologia , Bexiga Urinaria Neurogênica/psicologiaRESUMO
Within the context of physical disability, participation has typically been conceptualized in terms of one's performance of different roles and activities. This perspective, however, ignores the meanings and satisfactions that a person derives from participating. Without an accepted conceptualization of participation that accounts for people's subjective perceptions and experiences, it is challenging for decision-makers and service providers to design meaningful participation-enhancing services, programs, and policies. Accordingly, our objectives were (1) to conduct a review of definitions and conceptualizations of participation that extend beyond performance and capture people's subjective experiences of participating and (2) to identify key experiential aspects of participation that can be used as a basis for conceptualizing and operationalizing the concept more broadly. The project involved a systematic, configurative review of relevant literature. Ten relevant articles were identified. Information on characteristics associated with experiential aspects of participation was extracted and subjected to a thematic analysis. The following 6 themes emerged: autonomy, belongingness, challenge, engagement, mastery, and meaning. Drawing on these findings, it is recommended that the individual's subjective perceptions of autonomy, belongingness, challenge, engagement, mastery, and meaning associated with participating be incorporated into conceptualizations and operationalizations of the participation construct. This recommendation provides a starting point for clinicians, researchers, and policymakers to conceptualize and measure the participation concept more consistently and more broadly.
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Pessoas com Deficiência/psicologia , Modalidades de Fisioterapia , Participação Social/psicologia , Humanos , Meio SocialRESUMO
PURPOSE: To test the hypothesis among people with spinal cord injury (SCI) that greater fulfillment of peer support needs to be associated with greater participation and life satisfaction. A secondary objective was to identify characteristics of people in great need of SCI peer support. METHOD: The participants consisted of a population-based sample of 1549 adults with SCI. The participants completed a survey with questions on peer support, participation, life satisfaction and provided demographic and SCI-related information. A secondary analysis of cross-sectional survey data was conducted. A set of regression analyses tested the primary purpose and a partition analysis was conducted to examine the secondary objective. RESULTS: In regression analyses, peer support need fulfillment was positively associated with autonomous-outdoors participation (p < 0.05), health participation (p < 0.05), and work/education participation (p < 0.05), as well as life satisfaction (p < 0.001) after controlling demographic and SCI-related variables. However, peer support need fulfillment was not related with overall participation or other subdomains of participation: autonomy indoors, social relationships and family role. The number of unmet SCI-related needs, injury characteristics and education were associated with fulfillment of SCI peer support needs. CONCLUSIONS: The results provide some evidence that SCI peer support plays an important role in promoting participation and life satisfaction. Individuals with many SCI-related unmet needs are most likely to report a need for peer support. IMPLICATIONS FOR REHABILITATION: The receipt of peer support after a spinal cord injury (SCI) is positively related to aspects of social participation and life satisfaction. Provision of peer support can play an important role in the SCI rehabilitation process. Education, injury-related characteristics, and the number of other unmet needs are factors that rehabilitation professionals can use to identify those in particular need of peer support. Rehabilitation professionals should encourage patients who have sustained an SCI, to participate in peer support programs.
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Nível de Saúde , Participação do Paciente , Satisfação Pessoal , Apoio Social , Traumatismos da Medula Espinal/reabilitação , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To develop and pre-test the Nottwil Environmental Factors Inventory (NEFI), a questionnaire assessing the perceived impact of environmental factors on specific areas of participation (productive life, social life, and community life) experienced by people with spinal cord injury. SUBJECTS/PATIENTS: Thirty-seven participants with spinal cord injury in Canada, Switzerland and the USA. METHODS: A first draft of the NEFI was developed based on a new theoretical model, the International Classification of Functioning, Disability and Health (ICF) Core Sets for spinal cord injury, and expert consultation. Three rounds of cognitive testing were conducted to examine participants' comprehension of the conceptual framework and items, to identify challenges in cross-cultural measurement, and iteratively to refine the questionnaire. RESULTS: Participants were able to differentiate well between environmental factors influencing productive life and those influencing social life or community life, but not between environmental factors influencing social life and community life. Items intended to capture avoidance of participation due to barriers or overcoming of obstacles were generally well understood. CONCLUSION: For people with spinal cord injury, the NEFI may help to identify limiting and helpful environmental factors, while considering avoiding and overcoming behaviours. Quantitative validation and exploration of the possible use of the NEFI in other diagnostic groups is recommended.
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Terapia Cognitivo-Comportamental/métodos , Adulto , Idoso , Canadá , Exposição Ambiental , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Suíça , Estados UnidosRESUMO
This study aimed to assess upper extremity capacity as a potential indicator of needs related to household activities for rehabilitation services in people with myotonic dystrophy type 1 (DM1). A cross-sectional study was set in an outpatient neuromuscular clinic where 200 adults with a confirmed diagnosis of DM1 (121 women; mean age: 47 y) were selected from the registry of a neuromuscular clinic to participate. Housing-related activities were assessed using the "housing" section of the Assessment of Life Habits Questionnaire (LIFE-H). The upper extremity assessment included grip strength (Jamar dynamometer), lateral pinch strength (pinch gauge), gross dexterity (Box and Block Test) and fine dexterity (Purdue Pegboard Test). Correlations with the LIFE-H item "housing" were stronger for grip and lateral strength (r = 0.62; 0.61). When difficulties were present in "housing", the cut-off score associated with lateral pinch strength was 4.8 kg (sensitivity: 75.6%; specificity: 79.2%). Grip strength presented cut-off scores that clinically differed by gender. In conclusion, potential indicator of needs related to household activities for rehabilitation services with valid assessment tools were developed for people with DM1 who experience difficulties in housing-related activities. These criteria will assist health professionals in their attempt to refer DM1 patients to rehabilitation services at the appropriate time.
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Atividades Cotidianas , Distrofia Miotônica/reabilitação , Avaliação das Necessidades , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Força da Mão , Humanos , Masculino , Pessoa de Meia-Idade , Distrofia Miotônica/diagnóstico , Participação do Paciente , Apoio Social , Extremidade Superior/fisiopatologiaRESUMO
BACKGROUND: Individuals with spinal cord injury (SCI) have a more than twofold increased risk of heart disease and stroke compared with able-bodied individuals. The increased risk appears to be in excess of the risk conferred by several well-established risk factors, including diabetes, hypertension, and sex. This raises the question whether other factors, secondary to SCI, are also contributing to the development of cardiovascular disease (CVD). Two potential factors associated with SCI and CVD are pain and depression. Both are frequently reported among individuals with SCI, develop in the acute stages of injury, and are commonly described as severe. Therefore, the primary aim of this study was to examine the relationship between pain (and types of pain) and depression with CVD among individuals with SCI. METHODS: A total of 1,493 individuals (referred sample) with chronic SCI participated in a self-report cross-sectional multicenter Canada-wide survey from 2011-2012 (mean age ± standard deviation: 49.6 ± 13.9 years). RESULTS: After adjustment for age, sex, and injury characteristics, neuropathic pain and depression were significantly and independently associated with CVD (adjusted odds ratio and 95% confidence interval: 2.27 (1.21, 4.60) for neuropathic pain; 4.07 (2.10, 7.87) for depression). In contrast to neuropathic pain, non-neuropathic pain was not significantly associated with CVD (p = 0.13). CONCLUSION: In conclusion, these data illustrate important interrelationships between secondary complications following SCI, as well as raise the possibility of neuropathic pain (versus nociceptive pain) as a novel and emerging risk factor for CVD.
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Doenças Cardiovasculares/epidemiologia , Depressão/epidemiologia , Neuralgia/epidemiologia , Traumatismos da Medula Espinal/epidemiologia , Adulto , Idoso , Canadá/epidemiologia , Doenças Cardiovasculares/etiologia , Comorbidade , Estudos Transversais , Depressão/etiologia , Feminino , Inquéritos Epidemiológicos , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Modelos Teóricos , Neuralgia/etiologia , Prevalência , Risco , Traumatismos da Medula Espinal/complicaçõesRESUMO
BACKGROUND: To better understand service-related needs and the current situation of persons with spinal cord injury (SCI) living in the community, a more comprehensive approach for studying their interrelationships (needs vs community living outcomes) is greatly needed. OBJECTIVE: To describe the development, design, and findings of a Canadian survey portraying the life situation of people with SCI. METHOD: The SCI Community Survey covers demographics, health, SCI-specific needs, community participation, employment, quality of life, health care utilization, and overall health rating. A total of 1,549 persons with SCI completed the survey (Web or phone) between May 2011 and August 2012. RESULTS: Some major expressed needs for services to support community living are met to a great extent for a substantial proportion of people with SCI. Complications remain highly prevalent for some health issues, including pain, sexual dysfunction, and musculoskeletal disorders. The extent of community participation based on values and preferences varies tremendously among daily activities and social roles. Some dimensions of quality of life are rated positively (eg, family life) while others are greatly disrupted (eg, sex life and physical health). Most of these findings vary significantly between people with traumatic and nontraumatic lesions. CONCLUSION: This survey is the first in Canada and among the first worldwide to draw a comprehensive picture of major aspects of the lives of people with SCI including service needs. The results will help to determine the links between various aspects of community living and guide service providers and policy makers in focusing on major issues to enhance quality of life after SCI.
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BACKGROUND: There is a lack of literature regarding service needs of people with SCI living in the community. Better assessment of expressed and met and unmet needs would help in the development of effective service delivery. OBJECTIVE: From a national SCI Community Survey in Canada, the aim was to identify the most critical service needs of people living in the community at least 1 year post discharge from rehabilitation and the support they received to meet their needs. METHOD: Data were collected mainly through a secure Web site and encompassed demographics, personal and household income, an SCI severity measure, and an SCI community needs measure containing information on 13 SCI-related needs. RESULTS: A total of 1,549 persons with SCI (traumatic lesion, n = 1,137; nontraumatic lesion, n = 412) across Canada completed the survey. Most critical needs for community integration were expressed by a substantial proportion of survey participants, but significantly more expressed and met needs were reported by persons with a traumatic than a nontraumatic lesion. Personal and environmental characteristics influenced the probability of expressing and meeting needs (eg, severity of injury and household income). Help and support to meet expressed needs were received from government agencies, community organizations, and friends or family. CONCLUSION: Better assessment of expressed and met or unmet needs for services remains a challenge but will serve as a tool to optimize service delivery in the community. Environmental barriers to services, particularly the process of getting needs met and associated costs, remain an issue that requires a reconsideration of some aspects of access to services.
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BACKGROUND: Secondary health conditions (SHCs) are common following traumatic spinal cord injury (tSCI) and are believed to influence a person's ability to participate in daily activities (DAs). This association should be understood so that health care providers may target interventions with clarity and purpose to manage SHCs and facilitate DAs to maximal effect. OBJECTIVE: To explore the association between SHCs and DAs expressed as the increased chance of not participating as much as wanted in a DA when an SHC is present. METHODS: Community-dwelling persons with tSCI (n = 1,137) responded to the SCI Community Survey. The occurrence and frequency of 21 SHCs were determined. The extent of participation in 26 DAs was measured. The relative risk (RR) of not participating as much as wanted in a DA when a SHC is present was calculated. RESULTS: When some SHC were present, the RR of not participating as much as wanted increased significantly (range, 15%-153%; P < .001). Certain SHCs (light-headedness/dizziness, fatigue, weight problems, constipation, shoulder problems) were associated with a greater chance of not participating in many DAs. No single SHC was associated with every DA and conversely not every DA was associated with an SHC. CONCLUSIONS: Maximizing participation in DAs requires minimizing SHCs in every instance. Understanding the association between SHCs and DAs may facilitate targeted care resulting in less severe SHCs, greater participation in DAs, and benefits to both the individual and society.
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BACKGROUND: Persons with spinal cord injury (SCI) living in the community have high health care utilization (HCU). To date, the interrelationships among multiple secondary health conditions (multimorbidity due to comorbidities and complications) that drive HCU and their impact on patient outcomes are unknown. OBJECTIVE: To determine the association among multimorbidity, HCU, health status, and quality of life. METHODS: Community-dwelling persons with traumatic SCI participated in an online/phone SCI Community Survey. Participants were grouped using the 7-item HCU questionnaire (group 1 did not receive needed care and/or rehospitalized; group 2 received needed care but rehospitalized; group 3 received needed care and not rehospitalized). Personal, injury, and environmental factors; multimorbidity (presence/absence of 30 comorbidities/ complications); health status (Short Form-12); and quality of life measures (Life Satisfaction-11 first question and single-item quality of life measure) were collected. Associations among these variables were assessed using multivariate analysis. RESULTS: The 1,137 survey participants were divided into 3 groups: group 1 (n = 292), group 2 (n = 194), and group 3 (n = 650). Group 1 had the greatest number of secondary health conditions (15.14 ± 3.86) followed by group 2 (13.60 ± 4.00) and group 3 (12.00 ± 4.16) (P < .05). Multimorbidity and HCU were significant risk factors for having a lower SF-12 Mental (P < .001) and Physical Component Score (P < .001). They in turn were associated with participants reporting a lower quality of life (P < .001, for both questions). CONCLUSIONS: Multimorbidity and HCU are interrelated and associated with lower health status, which in turn is associated with lower quality of life. Future work will include the development of a screening tool to identify persons with SCI at risk of inappropriate HCU (eg, rehospitalization, not able to access care), which should lead to better patient outcomes and cost savings.
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BACKGROUND: Few studies have examined life course differences in the employment of Canadians with spinal cord injury (SCI). OBJECTIVE: To compare employment participation of young/middle-aged and older adults with SCI and to examine the association between employment and demographic and health factors, SCI-related needs, and social role participation at the 2 life phases. METHODS: A sample of young/middle-aged (18-54 years; n = 959) and older adults (55-64 years; n = 364) with SCI was recruited as part of a larger Canadian community survey. Pre- and postinjury employment were compared. Demographic and health factors, number of unmet SCI needs, and social role participation were collected and compared by life phase and employment status. Two multivariable logistic regression models were conducted and compared for young/middle-aged and older adults. RESULTS: Close to one-third of participants with SCI were working post injury (32%), a decline from the 62% of respondents working prior to their injury. Participants were more likely to work in less physically demanding job sectors including business/administration or health/science/teaching. An examination of life phase differences showed that young/middle-aged adults were more likely to be employed post injury (36%) when compared to older respondents (12% employed) who were more likely to report being retired (43%). Multivariable analyses revealed that for young/middle-aged adults, being married, attaining a postsecondary education, and having fewer unmet SCI needs were related to employment. Among older adults, having a traumatic injury was related to involvement in paid work. For both young/middle-aged and older adults, participating in more social roles was related to working. CONCLUSION: A life course perspective is important to understanding similarities and differences between young/middle-aged and older adults with SCI in their employment participation. Tailored programs and policies should be designed to promote labor force involvement at different phases of the working life course.