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Study Design: Psychometric study., Objectives: To i) describe the translation process and ii) explore the data completeness, targeting, reliability and aspects of validity of the Swedish version of Moorong Self-Efficacy Scale (s-MSES)., Settings: Community rehabilitation program., Methods: Ninety-two program participants and 42 peer mentors with spinal cord injury (SCI) in Active Rehabilitation training programs (enrolled in the International Project for the Evaluation of activE Rehabilitation (Inter-PEER)) were included. The s-MSES was completed online, once for program participants and twice for peer mentors. The translation process was based on guidelines and involved researchers, clinicians and consumers., Results: Minor linguistic adaptations were made. Ninety-one percent obtained a total score. As expected, peer mentors exhibited ceiling effects in all subscales. Cronbach´s alpha for the total scale was 0.92 (subscales 0.74-0.83). The intraclass correlation coefficient was excellent for the total and subscale scores (0.78-0.91). The s-MSES exhibited sensitivity to changes and there were no systematic changes between evaluation points. The s-MSES correlated significantly and positively with life satisfaction and resilience, and negatively with depression/anxiety., Conclusion: The s-MSES was translated through a rigorous, consumer-involved process ensuring accurate linguistic translation and cultural adaptation. Our results support the data completeness, targeting, reliability and aspects of validity of the s-MSES. The s-MSES can thus be considered suitable to assess self-efficacy in persons with SCI in community rehabilitation settings. The now available Swedish version of the MSES will facilitate national research, clinical evaluations and international comparisons., Sponsorship: Not applicable., (© 2024. The Author(s), under exclusive licence to International Spinal Cord Society.)

Background: We investigated the personal philosophies of eight persons with a tetraplegic condition (four male, four female), all living in Sweden with a chronic spinal cord injury (SCI) and all reporting a good life. Our purpose was to discover if there is a philosophical mindset that may play a role in living a good life with a traumatic SCI., Methods: Two rounds of in-depth qualitative interviews were performed by the same interviewer, a philosophical practitioner by training (de Miranda). The second round systematically covered the following elements: bodily sense, sense of self, sense of belonging, sense of the possible, sense of purpose and philosophical sense. This six-step method developed by de Miranda is called SMILE_PH, an acronym for Sense-Making Interviews Looking at Elements of Philosophical Health., Results: All the interviewees, as a consequence of their trauma, reported having gone through a reinvention of themselves which implied questioning the meaning and purpose of their life in particular and life in general. A philosophical rather than realistic sense of the possible was abstracted toward teleological growth. All interviewees developed a sense of purpose based on self-interested altruism and solidarity with disabled peers., Conclusions: To reinvent a good life with SCI, in addition to physical training and willpower, one needs to consider philosophical questions about the self and life, what Kant called the cosmic interests of reason: What may I hope? What must I do? What can I know? Our results indicate that we should, in the future, explore what the philosophical health approach may bring to rehabilitation processes in the months or years that follow the trauma., (© 2023 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Study Design: Qualitative study., Objectives: To explore how peer mentors with spinal cord injury (SCI) experience their role in Active Rehabilitation programs in Sweden., Setting: Community peer-based training programs in Sweden., Methods: Twenty active peer mentors were strategically selected and invited to participate. Nine individuals of diverse age, level of SCI and time since injury participated in semi-structured interviews via video link. Qualitative content analysis was used to analyze the data., Results: The theme: Being a vulnerable superhero-a balancing act with rewards was based upon five categories: Being a suitable fit for a demanding culture, Offering a shortcut to coping with spinal cord injury life, Feeling rewarded by helping others, Building trust is reciprocal, and Constituting the norm in a temporary community. The peer mentors expressed vulnerability of sharing life experiences, being a role model and building relationships with mentees. The theme emerged from notions of high expectations and demands of the SCI peer mentor role. Being a peer mentor empowered, educated and inspired the peer mentors themselves., Conclusions: Peer mentors were continuously balancing between being open and vulnerable, and being strong and capable. Personality traits were reported as more important aspects of the role than physical skills. The individual mentor-mentee meetings and relationships were considered more important than the actual training sessions. Feeling part of a community and the norm through meeting others in a similar situation was perceived as a reward and motivation for participating as a peer mentor., (© 2023. The Author(s), under exclusive licence to International Spinal Cord Society.)

Study Design: Systematic review with meta-analysis., Objectives: To explore temporal changes in incidence rates, demographic and injury characteristics of incident traumatic spinal cord injury (TSCI) in Nordic countries., Methods: Peer-reviewed publications and periodic reports about epidemiology of TSCI in the Nordic countries (Denmark, Finland, Iceland, Norway, Sweden) are identified, reviewed and included in the meta-analysis. Data are stratified into 20-year intervals to allow for chronological comparisons. Pooled estimates are derived using random effects meta-analysis., Results: Twenty-three data sources are included presenting a total of 5416 cases. The pooled incidence rate for 2001-2020 is 15.4 cases/million/year compared to 17.6 and 18.3 cases/million/year during the two previous 20-year intervals. The proportion of cases with TSCI in the 15-29 age-group decreases from 50% (1961-1980) to 20% (2001-2020), while it increases from 9% to 35% in 60+ age-group. Transportation-related injuries decrease from 44% (1961-1980) to 27% (2001-2020). Conversely, fall-related injuries increase from 32% (1961-1980) to 46% (2001-2020). The proportion of individuals with incomplete tetraplegia increases from 31% (1961-1980) to 43% (2001-2020), while complete paraplegia decreases from 25% to 16%., Conclusion: The characteristics of TSCI in the Nordic countries have changed drastically over the last six decades, in line with clinical experiences, and limited research evidence from other countries. These changes indicate the need for adapting research focus, prevention strategies, design and provision of care, rehabilitation and community services towards older individuals, fall-related injuries, and incomplete injuries in Nordic countries and other settings internationally where such changes occur., (© 2022. The Author(s), under exclusive licence to International Spinal Cord Society.)

Objective: To describe data completeness, targeting and reliability of the Swedish version of the Spinal Cord Independence Measure Self-Report (s-SCIM-SR)., Design: Translation and reliability study., Subjects: Programme participants (n = 48) and peer mentors (n = 42) with spinal cord injury enrolled in the INTERnational Project for the Evaluation of "activE Rehabilitation" (inter-PEER)., Methods: The translation process was based on guidelines/recommendations, and involved expert competence, including consumers. The s-SCIM-SR was distributed online, once for programme participants and twice for peer mentors., Results: Sixty-nine individuals (77%) obtained a total score. Most missing data were found in the items Respiration and Using the toilet. Cronbach's alpha for the full scale was 0.89, for Self-care 0.92, for Respiration and sphincter management 0.37 and for Mobility 0.86. The intraclass correlation coefficient was excellent for all subscales and the full scale. Measures of variability showed high sensitivity to changes and Bland Altman analyses revealed no systematic changes between evaluation points., Conclusion: These results support the data completeness, targeting and reliability of the Swedish version of the SCIM-SR. However, some problems were found in the subscale Respiration and sphincter management. The s-SCIM-SR can be considered psychometrically sound and suitable to assess physical independence among persons with spinal cord injury in Swedish community settings.

Background: Active Rehabilitation (AR) is a community peer-based concept for people with spinal cord injury (SCI) that is primarily delivered through brief residential training programmes. Despite a plethora of positive anecdotal evidence of AR programmes as life-changing experiences, the effects of AR-programmes have not been evaluated scientifically. Here, we present the protocol of the INTERnational Project for the Evaluation of "activE Rehabilitation" (inter-PEER) aiming to evaluate the effects of AR training programmes on community-dwelling individuals with SCI., Methods: International prospective cohort study that recruits consecutive participants in AR training programmes. Evaluation is conducted through a web-based survey at 3 time-points: at the commencement and completion of the training programme, and 3 months after the end of the training programme. Evaluation also includes a practical wheelchair skills test at the first two time-points. The primary outcome measures are the Spinal Cord Independence Measure Self-report (SCIM-SR), the Queensland Evaluation of Wheelchair Skills test (QEWS), the Wheelchair Skills Test Questionnaire (WST-Q) and the Moorong Self-Efficacy Scale (MSES). The secondary outcome measures are the 11-item Life Satisfaction Questionnaire (LiSat-11), the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation), the Leisure Time Physical Activity Questionnaire for people with SCI (LTPAQ-SCI) and the 10-item Connor-Davidson Resilience Scale (CD-RISC-10). We piloted the implementation of the protocol in Sweden in 7 participants with diverse SCI and sociodemographic characteristics and collected feedback from participants and peer-mentors about study procedures through interviews, a workshop and field observations., Discussion: Inter-PEER is the first initiative to propose a systematic evaluation of the effects of AR training programmes among individuals with SCI. The project is a collaborative work of multiple stakeholders, including researchers, clinicians, peer mentors with SCI, and administrators of organisations providing AR programmes. The inter-PEER uses standardised outcome measures relevant to the AR context, it will facilitate quality evaluations of community peer-based programmes, stimulate international collaborations, and inform the design of randomised controlled trials on the effects of AR training programmes.

Study Design: Prospective cohort study with a repeated measures analysis., Objectives: To measure the effects of the Active Rehabilitation (AR) training programme for community-dwelling individuals with spinal cord injury (SCI) in Botswana on physical independence, wheelchair mobility, self-efficacy, life satisfaction, level of physical activity and community participation., Setting: The inaugural AR training programme in Botswana, a community peer-based programme for people with SCI. The 10-day residential programme in Botswana was led by an international team of peer mentors and health professionals., Methods: Participants with SCI (on average 4 years after injury) completed a survey comprising a battery of standardised outcome measures at three timepoints: at the start, on completion and at 5 months after the programme (n = 14). Participants also completed a practical wheelchair skills test at start and completion of the programme (n = 17)., Results: Participants improved in the mobility subscale of the Spinal Cord Independence Measure Self Report on completion (p = 0.011, d = 0.85) and at 5-month follow-up (p = 0.005, d = 0.93) as compared to baseline. They also achieved moderate improvement in self-efficacy to manage their condition (physical function domain of Moorong Self-Efficacy Scale) and large improvements in wheelchair mobility as assessed through the Queensland Evaluation of Wheelchair Skills test and the Wheelchair Skills Test Questionnaire. All positive results were retained at 5-month follow-up., Conclusions: Findings indicate that the peer-based programme AR can play an important role in promoting physical independence, wheelchair mobility and injury-management self-efficacy in community-dwelling individuals with SCI in Botswana.

Objective: To explore self-reported health problems and functional goals in community-dwelling individuals with spinal cord injury in Sweden., Design: Cross-sectional descriptive study that used a survey designed by an experienced peer mentor with spinal cord injury., Subjects: Community-dwelling individuals with spinal cord injury from Sweden., Methods: The survey was distributed online by the community peer-based organization RG Active Rehabilitation., Results: A total of 203 individuals (55% males, 90% acquired spinal cord injury) from all regions in Sweden completed the survey. Of these, 33% reported living with > 2 unbearable physical or psychological problems. While some problems (e.g. problems related to bladder and balance) were consistently ranked to be common across all years since injury and type of spinal cord injury, distribution of some other unbearable problems (e.g. type of pain, excessive weight) varied between subgroups. Years since injury, level of acquired spinal cord injury and sex, but not age-group or type of spinal cord injury, explained some of the variation in the goals., Conclusion: The high proportion of reported "unbearable" problems point to the stronger need for systematic, comprehensive, life-long, multi-disciplinary follow-up for people with spinal cord injury. The high rate of goals related to improving strength and fitness across all participants independently of their characteristics highlight the important role of community organizations that offer such lifetime services.

Introduction: Active Rehabilitation (AR) is a community peer-based approach that started in Sweden in 1976. As a key component of the approach, AR training camps provide intensive, goal-oriented, intentional, group-based, customised training and peer-support opportunities in a community environment for individuals with spinal cord injury., Study Design: Prospective cross-sectional study., Objectives: To describe the profile of the organisations that use components of the AR approach, and to explore the characteristics and the international variations of the approach., Setting: Twenty-two organisations from 21 countries from Europe, Asia and Africa reported using components of the AR approach during the past 10 years., Methods: An electronic survey was developed and distributed through a personalised email. Sampling involved a prospective identification of organisations that met the inclusion criteria and snowball strategies., Results: While there were many collaborating links between the organisations, RG Active Rehabilitation from Sweden and Motivation Charitable Trust from the United Kingdom were identified as key supporting organisations. The 10 key elements of the AR approach were found to be used uniformly across the participating organisations. Small variations were associated with variations in country income and key supporting organisation., Conclusions: This is the first study to describe the key elements and international variations of the AR approach. This will provide the basis for further studies exploring the effectiveness of the approach, it will likely facilitate international collaboration on research and operational aspects and it could potentially support higher integration in the health-care system and long-term funding of these programmes.

Study Design: Systematic review and meta-synthesis of qualitative findings., Objectives: To establish the perceived effectiveness and mechanisms of community peer-based programmes based on narratives of consumers with spinal cord injury (SCI)., Methods: Scopus, Academic Search Complete, CINAHL, Health Source, Medline, PsycARTICLES, PsychINFO, SPORTSDiscus and ProQuest were searched for articles published in English between January 1990 and December 2015. Qualitative studies referring to community peer-based interventions were included if most cases had a SCI. The results section of included studies was extracted and entered in NVivo. Data were inductively coded and analysed according to the three phases of Thematic Synthesis., Results: The search yielded 1402 unique records, out of which 126 were scrutinised in full. Four studies were appraised based on eight criteria and were finally included in the analysis. Three analytical themes emerged: (1) a unique learning environment created by the right mixture of learning resources, learning processes and a can-do attitude; (2) peer mentors-a unique learning resource with high level of relatedness that eases and empowers participants; and (3) an intervention that responds to important unmet needs and unrealised potential., Conclusions: Community peer-based programmes for people with SCI provide individualised training in important life areas, using a variety of learning resources and a plethora of learning processes. The high level of perceived effectiveness suggests that this type of intervention is an important tool of health systems post discharge from initial rehabilitation. Community organisations should be supported with evaluating their programmes through quality research.

Study Design: Prospective, population-based study. This paper is part of the Stockholm Thessaloniki Acute Traumatic Spinal Cord Injury Study (STATSCIS)., Objectives: To characterize patient populations and to compare acute management after traumatic spinal cord injury (TSCI)., Settings: The Greater Thessaloniki region in Greece and the Greater Stockholm region in Sweden., Methods: Inception cohorts with acute TSCI that were hospitalized during the study period, that is September 2006 to October 2007, were identified. Overall, 81 out of 87 cases consented to inclusion in Thessaloniki and 47 out of 49 in Stockholm. Data from Thessaloniki were collected through physical examinations, medical record reviews and communication with TSCI cases and medical teams. Data from Stockholm were retrieved from the Nordic Spinal Cord Injury Registry., Results: There were no significant differences between study groups with regard to core clinical characteristics. In contrast, there were significant differences in (1) transfer logistics from the scene of trauma to a tertiary-level hospital (number of intermediate admissions, modes of transportation and duration of transfer) and (2) acute key therapeutic interventions, that is, the use of mechanical ventilation (49% in Thessaloniki versus 20% in Stockholm), and performance of tracheostomy (36% in Thessaloniki versus 15% in Stockholm); spinal surgery was performed significantly more often and earlier in Stockholm than in Thessaloniki., Conclusions: Despite largely similar core clinical characteristics, Stockholm and Thessaloniki cases underwent significantly different acute management, most probably to be attributed to adaptations to the differing regional approaches of care one following a systematic approach of SCI care and the other not.

Study Design: Prospective, population-based study. This paper is part of the Stockholm Thessaloniki Acute Traumatic Spinal Cord Injury Study (STATSCIS)., Objectives: To evaluate and compare outcomes, length of stay (LOS), associated conditions and medical complications at 1-year post-trauma., Settings: The Greater Thessaloniki region, Greece, and the Greater Stockholm region, Sweden. While Stockholm follows a SCI system of care, Thessaloniki follows a fragmented 'non-system' approach., Subjects: Out of the 87 cases in Thessaloniki and the 49 cases in Stockholm who comprised the study population of STATSCIS, 75 and 42 cases respectively were successfully followed-up during the first year post-trauma., Results: Significantly superior outcomes (that is, survival with neurological recovery, functional ability and discharge to home) and shorter LOS for initially motor complete cases occurred in Stockholm. Management routines known to increase long-term morbidity, for example, long-term tracheostomy and indwelling urethral catheters were significantly more common in Thessaloniki. Major medical complications, that is, multiple pressure ulcers, heterotopic ossification and bacteremia/sepsis were more frequent in Thessaloniki., Conclusions: Our findings show how two rather similar cohorts of TSCI manifest large discrepancies in terms of 1-year outcomes and complications, depending on the type of management they receive. As the major difference between regions was the presence or absence of a SCI system of care, rather than differences in availability of modern medicine, the mere presence of the latter does not seem to be sufficient to guarantee adequate outcomes. This study provides strong evidence as to the urgent need of implementing a SCI system of care in Greece.

Study Design: Prospective population-based open-ended study. This paper is part of the Stockholm-Thessaloniki Acute Traumatic Spinal Cord Injury Study., Objectives: To calculate incidence and evaluate the epidemiological profile of the incident population with traumatic spinal cord injury (TSCI)., Settings: The greater Thessaloniki region in Greece and the greater Stockholm region in Sweden., Methods: TSCI individuals, older than 15 years of age, who had survived the first 7 days post-trauma, were identified through an active surveillance system. The forms of the Nordic Spinal Cord Injury Registry were used., Results: 87 individuals were injured in the greater Thessaloniki and 49 in the greater Stockholm region. Annual crude incidence was 33.6 per million for Thessaloniki and 19.5 per million for the Stockholm region. The leading causes of injury for the Thessaloniki region were transportation accidents (51%) and falls (37%), and those for the Stockholm region were falls (47%) and transportation accidents (23%). A significantly larger number of individuals of the Thessaloniki group were injured in transportation accidents. There was no significant difference between regions with regard to the type of resulting impairment., Conclusions: Incidence of TSCI was considerably higher in the Thessaloniki region as compared with that in the Stockholm region, probably chiefly reflecting differences in preventative measures with regard to driving.

Abstract Background Active Rehabilitation (AR) is a community peer-based concept for people with spinal cord injury (SCI) that is primarily delivered through brief residential training programmes. Despite a plethora of positive anecdotal evidence of AR programmes as life-changing experiences, the effects of AR-programmes have not been evaluated scientifically. Here, we present the protocol of the INTERnational Project for the Evaluation of “activE Rehabilitation” (inter-PEER) aiming to evaluate the effects of AR training programmes on community-dwelling individuals with SCI. Methods International prospective cohort study that recruits consecutive participants in AR training programmes. Evaluation is conducted through a web-based survey at 3 time-points: at the commencement and completion of the training programme, and 3 months after the end of the training programme. Evaluation also includes a practical wheelchair skills test at the first two time-points. The primary outcome measures are the Spinal Cord Independence Measure Self-report (SCIM-SR), the Queensland Evaluation of Wheelchair Skills test (QEWS), the Wheelchair Skills Test Questionnaire (WST-Q) and the Moorong Self-Efficacy Scale (MSES). The secondary outcome measures are the 11-item Life Satisfaction Questionnaire (LiSat-11), the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation), the Leisure Time Physical Activity Questionnaire for people with SCI (LTPAQ-SCI) and the 10-item Connor-Davidson Resilience Scale (CD-RISC-10). We piloted the implementation of the protocol in Sweden in 7 participants with diverse SCI and sociodemographic characteristics and collected feedback from participants and peer-mentors about study procedures through interviews, a workshop and field observations. Discussion Inter-PEER is the first initiative to propose a systematic evaluation of the effects of AR training programmes among individuals with SCI. The project is a collaborative work of multiple stakeholders, including researchers, clinicians, peer mentors with SCI, and administrators of organisations providing AR programmes. The inter-PEER uses standardised outcome measures relevant to the AR context, it will facilitate quality evaluations of community peer-based programmes, stimulate international collaborations, and inform the design of randomised controlled trials on the effects of AR training programmes.