| 1. |
- Aaby, Anders, et al.
(författare)
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Does the Danish version of the Spinal Cord Lesion-related Coping Strategies Questionnaire measure what we think it measures? : A triangulated mixed-methods validation approach
- 2022
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Ingår i: Spinal Cord. - : SPRINGERNATURE. - 1362-4393 .- 1476-5624.
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Tidskriftsartikel (refereegranskat)abstract
- Study design: Triangulated mixed-methods validation study.Objectives: To validate the Danish version of the Spinal Cord Lesion-related Coping Strategies Questionnaire (SCL-CSQ).Setting: Community in Denmark.Methods: Participants were invited via a patient organization and its specialized hospital. Eligibility criteria were having a spinal cord injury (SCI), being 18 years or older, and able to understand and respond in Danish. Quantitative data were collected to determine internal consistency and criterion validity of the three subscales of SCL-CSQ, i.e., acceptance, fighting spirit, and social reliance. The Three-Step Test-Interview approach was employed to determine whether items measured what they were intended to measure (i.e., construct validity based on response processes).Results: The quantitative sample consisted of 107 participants, and the interview sample comprised 11 participants. The acceptance and fighting spirit subscales showed adequate internal consistency (Cronbach's alpha of 0.72 and 0.76 respectively) and satisfactory criterion validity (expected correlations with quality of life and depression). The social reliance subscale showed inadequate internal consistency (Cronbach's alpha of 0.58) and criterion validity. All fighting spirit items and all but one acceptance items were interpreted congruently by most participants. Conversely, two social reliance items were only interpreted congruently by 9 and 27%.Conclusion: The acceptance and fighting spirit subscales of the Danish version of the SCL-CSQ showed good psychometric properties, while the social reliance subscale showed serious issues and should be revised. Researchers and clinicians are urged to reflect on these findings when revising the SCL-CSQ or adapting it to other languages, cultural contexts, and rehabilitation settings.
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| 2. |
- Bendt, Martina, et al.
(författare)
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Adults with spina bifida : Ambulatory performance and cognitive capacity in relation to muscle function
- 2022
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 60:2, s. 122-128
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Tidskriftsartikel (refereegranskat)abstract
- STUDY DESIGN: Cross-sectional study.OBJECTIVE: Describe and compare ambulatory performance and cognitive capacity in relation to muscle function in an adult cohort with spina bifida. Also, explore factors associated with ambulation in participants with muscle function level 3.SETTING: Specialist clinic for adults with spinal cord disorders in Stockholm, Sweden.METHODS: A total regional cohort of adults (n = 219) with spina bifida was invited, 196 (104 women, mean age 35 years, SD 13 years) participated. Mode of mobility, cognitive capacity and muscle function were investigated. For participants with muscle function level 3, factors associated with ambulation were investigated using multivariate logistic regression analysis.RESULTS: In all, 84 participants (42%) were community ambulators, 22 (12%) household ambulators and 90 (46%) wheelchair users. There was a linear association between the lower degree of muscle function and scoliosis (P < 0.001). Mode of mobility varied despite similar muscle prerequisites in participants with muscle function level 3 (n = 58). Factors associated with ambulation in participants with muscle function level 3 were the absence of scoliosis, lower BMI and higher cognitive capacity.CONCLUSIONS: Cognitive capacity and mode of mobility varied widely across the cohort. However, in participants with muscle function level 3, despite similar muscular prerequisites, a large variation in the mode of mobility was found, suggesting that other factors were involved. It is important to prevent scoliosis, support a healthy lifestyle, as well as offer cognitive screening and support to promote ambulatory function and optimise independence in the everyday lives of adults with spina bifida.
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| 3. |
- Dunn, J. A., et al.
(författare)
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Grasp and Release Test for Tetraplegic Hand Assessment: an update of the Grasp and Release Test
- 2023
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Ingår i: Spinal Cord. - 1362-4393. ; 61:8, s. 466-468
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Tidskriftsartikel (refereegranskat)abstract
- The Grasp and Release Test (GRT) was originally developed to measure effectiveness of an implanted neuroprosthesis in people with tetraplegia. Its ease of use and lack of floor and ceiling effects culminated in recommendations for inclusion in a battery of tests to measure outcome following upper limb reconstructive surgery. However, the length of time taken to administer the GRT in a clinical setting, lack of instructions of accepted grasp patterns in the upper limb reconstructive surgery population and scoring procedures lead to differences in reporting outcomes using this measure. In order to ensure clinical utility for the upper limb reconstructive surgery population, revisions of the original test instructions have been made and are reported in this article. Further testing of the psychometric properties of the new measure are currently underway.
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| 4. |
- Hofers, Wiebke, et al.
(författare)
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Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design
- 2022
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Ingår i: Spinal Cord. - : SPRINGERNATURE. - 1362-4393 .- 1476-5624. ; 60:4, s. 339-347
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Tidskriftsartikel (refereegranskat)abstract
- Study design International multicentre cross-sectional study. Objectives To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. Setting Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. Methods An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. Results The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. Conclusions As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.
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| 5. |
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| 6. |
- Holmlund, Tobias, et al.
(författare)
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Defining accelerometer cut-points for different intensity levels in motor-complete spinal cord injury.
- 2020
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Ingår i: Spinal Cord. - : Nature Publishing Group. - 1362-4393 .- 1476-5624. ; 58, s. 116-124
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Tidskriftsartikel (refereegranskat)abstract
- STUDY DESIGN: Descriptive.OBJECTIVE: The present aim was to define accelerometer cut-point values for wrist-worn accelerometers to identify absolute- and relative-intensity physical activity (PA) levels in people with motor-complete paraplegics (PP) and tetraplegics (TP).SETTINGS: Rehabilitation facility in Sweden.METHODS: The participants were 26 (19 men, 7 women) with C5-C8, AIS A and B (TP) and 37 (27 men, 10 women) with T7-T12 (PP), AIS A and B. Wrist-worn accelerometer recordings (Actigraph GT3X+) were taken during seven standardized activities. Oxygen consumption was measured, as well as at-rest and peak effort, with indirect calorimetry. Accelerometer cut-points for absolute and relative intensities were defined using ROC-curve analyses.RESULTS: The ROC-curve analyses for accelerometer cut-points revealed good-to-excellent accuracy (AUC >0.8), defining cut-points for absolute intensity (2, 3, 4, 5, 6, 7 METs for PP and 2 to 6 METs for TP) and relative intensity (30, 40, 50, 60, 70, and 80% for PP and 40-80% for TP). The cut-points for moderate-to-vigorous physical activity was defined as ≥9515 vector magnitude counts per minute (VMC) for PP and ≥4887 VMC/min for TP.CONCLUSION: This study presents cut-points for wrist-worn accelerometers in both PP and TP, which could be used in clinical practice to describe physical activity patterns and time spent at different intensity levels.
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| 7. |
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| 8. |
- Irgens, I., et al.
(författare)
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Spinal cord injury and development of pressure injury during acute rehabilitation in Norway: a national retrospective cross-sectional study
- 2020
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 58, s. 1069-1079
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Tidskriftsartikel (refereegranskat)abstract
- Study design A national, retrospective, cross-sectional study. Objectives To analyze the prevalence of pressure injury (PI), and characteristics associated with PI development in the hospitalized population of persons with a newly acquired spinal cord injury (SCI) between 2004 and 2014. Setting All three specialized Spinal Cord Units in Norway. Methods Demographic data related to prevalence and potential risk factors were retrieved from the electronic medical record (EMR). Statistical analyses were performed, using IBM SPSS Statistics, version 23. Results We identified 1012 individuals with a new SCI. Mean age at injury was 48 years (SD 19). The period prevalence of PI was 16% (95% CI = 0.14-0.19), and identified PI associations were complete SCI (OR = 0.1), being injured abroad (OR = 2.4), bowel (OR = 13), and bladder (OR = 9.2) dysfunction; comorbidities like diabetes mellitus 1 (OR = 7.9), diagnosed depression (OR = 3.8), ventilator support (OR = 3.0), drug abuse (OR = 3.0), and concurrent traumatic brain injury (OR = 1.7). Individuals in the age group of 15-29 years had higher odds of PI compared with middle-aged individuals (45-59 years). Conclusion PI is a serious complication after SCI. The association between depression or comorbidity and PI occurrence should be investigated more thoroughly. We recommend implementation of a simple follow-up program regarding observation and prevention of PI. Increased awareness of factors that could contribute to PI will help to focus on better prevention and early recognition of PI. This will contribute to more optimal rehabilitation.
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| 9. |
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| 10. |
- Josefsson, Charlotta, 1985, et al.
(författare)
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Respiratory complications during initial rehabilitation and survival following spinal cord injury in Sweden: a retrospective study.
- 2021
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Ingår i: Spinal cord. - : Springer Science and Business Media LLC. - 1476-5624 .- 1362-4393. ; 59:6, s. 659-664
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Tidskriftsartikel (refereegranskat)abstract
- Retrospective study.To determine prevalence of respiratory complications in individuals with spinal cord injury (SCI) during the initial rehabilitation at the spinal cord injury unit (SCU) and to describe the subsequent effect on mortality.The SCU at the university hospital in Gothenburg, Sweden.We reviewed the medical charts of newly injured persons with SCI who were admitted to the SCU between 1/1/2010 and 12/31/2014. Outcome measures were time to death, length of stay, occurrence of respiratory complications, and the use of breathing aids.A total of 136 consecutive individuals were included; 53% with cervical SCI and 20% with lower SCI suffered from one or several respiratory complications during their initial rehabilitation in the SCU. At follow-up, 10/1/2018, 20% of the individuals were deceased. The most common cause of death was related to respiratory insufficiency. The individuals with respiratory complications during the initial rehabilitation in the SCU had particularly shortened survival compared with those without. The relative risk (RR) of dying if the person suffered from any respiratory complications during their initial rehabilitation in the SCU was 2.1 times higher than for those with no respiratory complications (RR, 2.1; 95% CI, 1.1-3.9).Having respiratory complications at the SCU provides preliminary data to support the claim that respiratory complications predict premature mortality. Early diagnosis and prophylactic measures seem to be necessary to mitigate the adverse consequences of serious respiratory problems.
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| 11. |
- Jörgensen, Sophie, et al.
(författare)
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Changes in health-related quality of life among older adults aging with long-term spinal cord injury
- 2021
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 59:7, s. 769-776
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Tidskriftsartikel (refereegranskat)abstract
- Study design: Cross-sectional and longitudinal. Objectives: To (i) describe health-related quality of life (HRQoL) and changes over 6 years in older adults aging with long-term spinal cord injury (SCI) and (ii) investigate how changes in HRQoL are associated with age, gender, and injury characteristics. Setting: Community in southern Sweden. Methods: From the initial 123 participants (years 2011–2012) in the Swedish Aging with Spinal Cord Injury Study (SASCIS), 77 individuals (32% women, C1-L3, AIS A–D, median age 66 years, median time since injury 31 years, 30% complete injuries) were assessed 6 years later. HRQoL was rated with the Spinal Cord Injury Quality of Life Questionnaire (SCI QL-23). Associations were investigated using multivariable linear regression analyses. Results: The median rating of global QoL (scale range 0–100) was relatively high at both assessments (67 and 83, respectively). There was a large variability in all HRQoL-domains and no significant changes over 6 years. As compared to an AIS D injury, a tetraplegia AIS A–C injury and tetraplegia and paraplegia AIS A–C injuries were associated with positive change in depressive symptoms and global QoL, respectively. Conclusions: Older adults aging with long-term SCI show large variations in all HRQoL-domains and have the potential to maintain a high and stable level of HRQoL over time. Persons with AIS D injuries may need increased attention to mitigate negative changes in depressive symptoms and global QoL. Further studies are needed to identify modifiable factors associated with changes in HRQoL in older adults aging with long-term SCI.
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| 12. |
- Jörgensen, Sophie, et al.
(författare)
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Sense of coherence and changes over six years among older adults aging with long-term spinal cord injury
- 2021
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 59:12, s. 1278-1284
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Tidskriftsartikel (refereegranskat)abstract
- Study design: Cross-sectional and longitudinal. Objectives: To (i) describe sense of coherence (SOC) and changes over six years in older adults aging with long-term spinal cord injury (SCI) and (ii) investigate how changes in SOC are associated with injury characteristics and changes in sociodemographics and secondary health conditions (SHCs; bowel-related and bladder-related problems, pain and spasticity). Setting: Community in Southern Sweden. Methods: From the initial 123 participants in the Swedish Aging with Spinal Cord Injury Study (SASCIS), 76 individuals (33% women, median age 66 years, median time since injury 30 years, AIS A-D, 30% complete) responded to the 13-item SOC scale (range 13–91) twice with a 6-year interval. Data were analyzed with multivariable hierarchical regression. Results: The participants rated a strong SOC at both assessments (median 73 and 76.5, respectively) which significantly increased over time. Overall, their marital status and vocational situation remained stable whereas SHCs increased. A change from not having a partner to having one was the only significant explanatory factor for a positive change in SOC. Conclusions: The present study describes, for the first time, changes in SOC over time and associated factors in older adults aging with long-term SCI. They generally maintain a strong ability to understand, handle, and being motivated when dealing with stressful events arising in their lives as a result of their SCI. The associations emphasize the importance of the social context for successful adaptation to living with SCI along the aging process.
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| 13. |
- Lindén, Josefine, et al.
(författare)
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The vulnerable superhero : a qualitative study investigating how spinal cord injury peer mentors experience their role in Active Rehabilitation training programs
- 2023
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Ingår i: Spinal Cord. - : Springer Nature. - 1362-4393 .- 1476-5624. ; 61:10, s. 541-547
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
- Mangold, Jasmin, et al.
(författare)
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The Swedish version of the Moorong Self-Efficacy Scale (s-MSES) - translation process and psychometric properties in a community setting
- 2024
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Ingår i: Spinal Cord. - : SPRINGERNATURE. - 1362-4393 .- 1476-5624.
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Tidskriftsartikel (refereegranskat)abstract
- Study designPsychometric study.ObjectivesTo 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).SettingsCommunity rehabilitation program.MethodsNinety-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.ResultsMinor 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.ConclusionThe 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.SponsorshipNot applicable.
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| 15. |
- Melin, Jeanette, et al.
(författare)
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Research priorities to enhance life for people with spinal cord injury: a Swedish priority setting partnership.
- 2023
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Ingår i: Spinal cord. - : Springer Nature. - 1476-5624 .- 1362-4393. ; 61:10, s. 570-7
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Tidskriftsartikel (refereegranskat)abstract
- Mixed-method consensus development project.To identify the top ten research priorities for spinal cord injury (SCI).Nationwide in Sweden in 2021-22.The PSP process proposed by the James Lind Alliance was used. It comprises two main phases: question identification and priority selection. People living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included.In the first phase, 242 respondents provided 431 inputs addressing potentially unanswered questions. Of these, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one question answered, so 56 questions proceeded to the prioritisation. In the second phase, the interim prioritisation survey, 276 respondents ranked the 56 questions. The top 24 questions then proceeded to the final prioritisation workshop, at which 23 participants agreed on the top ten priorities.This paper reveals issues that people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI find difficult to get answered. The top-priority questions for people living with SCI in Sweden concern specialist SCI care and rehabilitation, followed by a number of questions addressing physical health. Other topics, from the 56 key questions include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide researchers to design appropriate studies relevant to people with SCI.The project was funded by the Gothenburg Competence Centre for Spinal Cord Injury and the Swedish Association for Survivors of Accident and Injury (RTP).
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| 16. |
- Mirzaeva, L., et al.
(författare)
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Complications and mortality after acute traumatic spinal cord injury in Saint Petersburg, Russia
- 2020
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 58, s. 970-979
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Tidskriftsartikel (refereegranskat)abstract
- Study design: Retrospective cohort study. Objectives: We studied complications during early rehabilitation and their relation to length of stay (LOS) in the hospital as well as to survival in people with traumatic spinal cord injury (TSCI). Setting: All specialized hospitals of Saint Petersburg. Methods: We analysed all charts of patients admitted with acute TSCI to the city hospitals, 2012–2016. Patient characteristics, complications, time and cause of death, and LOS were recorded. Mean values with standard deviations and t-tests were used. We analysed mortality rate using the Kaplan–Meier method and calculated relative risks (RRs). Results: A total of 311 patients with TSCI were included. Complications occurred in 34% of patients; most were respiratory complications and pressure ulcers. Complications occurred more often in those with concomitant traumatic brain injury (TBI) (RR = 1.4, 95% CI: 1.2–1.8). All complications prolonged LOS (median, 11 days) and increased mortality in the acute phase (p < 0.001). In the early phase, 15% died, with a median time to death of 13 days. Respiratory complications markedly increased the death rate (RR = 18, 95% CI: 15–22). Mortality rate correlated also with age, TSCI severity and level, and concomitant TBI. Alcohol/drug consumption before TSCI increased the likelihood for complications (RR = 1.7, 95% CI: 1.3–2.1) and mortality (RR = 2.2, 95% CI: 1.6–3.1). Conclusion: Focus on prevention as well as early and optimal treatment of complications, together with no or low alcohol/drug consumption may reduce mortality in the early phase after TSCI and at the same time shorten LOS. © 2020, The Author(s), under exclusive licence to International Spinal Cord Society.
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| 17. |
- Moschovou, Maria, et al.
(författare)
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Temporal changes in demographic and injury characteristics of traumatic spinal cord injuries in Nordic countries-a systematic review with meta-analysis
- 2022
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Ingår i: Spinal Cord. - : SPRINGERNATURE. - 1362-4393 .- 1476-5624. ; 60, s. 765-773
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 19. |
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