| 1. |
- Alexander, MS, et al.
(författare)
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International spinal cord injury female sexual and reproductive function basic data set
- 2011
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 49:7, s. 787-90
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To create the International Spinal Cord Injury (SCI) Female Sexual and Reproductive Function Basic Data Set within the International SCI Data Sets. Setting: An international working group. Methods: The draft of the data set was developed by an international working group consisting of members appointed by the International Spinal Cord Society (ISCoS), the American Spinal Injury Association (ASIA), and a representative from the Executive Committee of the International SCI Standards and Data Sets. The data set was developed in an iterative process with review and comments by members of the Executive Committee of the International SCI Standards and Data Sets, ISCoS Scientific Committee, ASIA Board and the ISCoS Council, as well as all interested organizations and individuals. In addition, the data set was posted for 2 months at the ISCoS and ASIA websites for comments. ISCoS and ASIA approved the final version of the data set. To make the data set uniform, each variable and each response category within each variable have been specifically designed to promote the collection and reporting of comparable minimal data. Results: Variables included in the International SCI Female Sexual and Reproductive Function Basic Data Set are as follows: date of data collection, interest in discussing sexual issues, sexual issues unrelated to spinal cord lesion, sexual dysfunction related to spinal cord lesion, psychogenic genital arousal, reflex genital arousal, orgasmic function and menstruation. Complete instruction for data collection, data sheet and training cases are available at the websites of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).
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| 2. |
- Alexander, MS, et al.
(författare)
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International Spinal Cord Injury Male Sexual Function Basic Data Set
- 2011
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Ingår i: Spinal Cord. - 1362-4393. ; 49:7, s. 795-8
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To create the International Spinal Cord Injury (SCI) Male Sexual Function Basic Data Set within the International SCI Data Sets. Setting: An international working group. Methods: The draft of the data set was developed by an international working group consisting of members appointed by the International Spinal Cord Society (ISCoS), the American Spinal Injury Association (ASIA) and a representative from the executive committee of the International SCI Standards and Data Sets. The data set was developed in an iterative process with review and comments by the members of the executive committee of the International SCI Standards and Data Sets, ISCoS scientific committee, ASIA Board and the ISCoS Council, as well as all the interested organizations and individuals. Next, the data set was posted for 2 months at the ISCoS and ASIA's websites for comments. ISCoS and ASIA approved the final version of the data set. To make the data set uniform, each variable and each response category within each variable have been specifically defined in a way that is designed to promote the collection and reporting of comparable minimal data. Results: Variables included in the International SCI Male Sexual Function Basic Data Set are as follows: date of data collection, interest in discussing sexual issues, sexual issues unrelated to spinal cord lesion, sexual dysfunction related to spinal cord lesion, psychogenic erection, reflex erection, ejaculation and orgasmic function. Complete instructions for data collection, data sheet and training cases are available at the website of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).
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| 3. |
- Biering-Sørensen, F, et al.
(författare)
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International Spinal Cord Injury Upper Extremity Basic Data Set.
- 2014
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Ingår i: Spinal cord. - : Springer Science and Business Media LLC. - 1476-5624 .- 1362-4393. ; 52:9, s. 652-657
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Tidskriftsartikel (refereegranskat)abstract
- Objective:To develop an International Spinal Cord Injury (SCI) Upper Extremity Basic Data Set as part of the International SCI Data Sets, which facilitates consistent collection and reporting of basic upper extremity findings in the SCI population.Setting:International.Methods:A first draft of a SCI Upper Extremity Data Set was developed by an international working group. This was reviewed by many different organisations, societies and individuals over several months. A final version was created.Variables:The final version of the International SCI Upper Extremity Data Set contains variables related to basic hand-upper extremity function, use of assistive devices, SCI-related complications to upper extremity function and upper extremity/hand reconstructive surgery. Instructions for data collection and the data collection form are freely available on the ISCoS website (www.iscos.org.uk).Conclusion:The International SCI Upper Extremity Basic Data Set will facilitate consistent collection and reporting of basic upper extremity findings in the SCI population.
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| 4. |
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| 5. |
- Carney, J., et al.
(författare)
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Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set
- 2019
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Ingår i: Spinal cord series and cases. - : Nature Publishing Group. - 2058-6124. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- Study design:Consensus among international experts.Objectives: The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set. Setting: International expert working group.Methods: The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA.Results: The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools.Conclusion: The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed.Sponsorship: This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).
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| 6. |
- Kreuter, Margareta, 1947, et al.
(författare)
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Women's sexual functioning and sex life after spinal cord injury.
- 2011
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Ingår i: Spinal cord : the official journal of the International Medical Society of Paraplegia. - : Springer Science and Business Media LLC. - 1476-5624. ; 49, s. 154-160
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Tidskriftsartikel (refereegranskat)abstract
- Study design:Cross-sectional, mail-back questionnaire study.Objectives:To describe women's experiences of sexual functioning and sex life after spinal cord injury (SCI).Setting:Sweden, Denmark, Norway, Finland, and Iceland.Methods:All community-living SCI women treated at spinal cord centres in Sweden, Denmark, Norway, Finland, and Iceland meeting inclusion criteria (n=963) were mailed the study-specific SCI Women Questionnaire. Out of the 532 respondents, 392 reported having had sex after injury and were thus included in the study. The included women had a mean age of 42 years (range 18-68) and a mean time since injury of 11 years (range 2-54).Results:The SCI women reported that the injury caused many changes in their sex life and affected many aspects of their sexuality negatively. Some changes were of a physical nature (for example, decreased, lost, or changed sensation; difficulties to achieve orgasm; bladder or bowel problems; and difficulties to move and position oneself) whereas other changes were of a psychological nature (for example, feeling unattractive or less attractive, having less self-confidence, and difficulties to meet or find a partner).Conclusion:Successful SCI rehabilitation requires a holistic approach, taking into account the patient's physical, psychological, and interpersonal circumstances. Given that many women with SCI remain sexually active but often experience less satisfaction after injury, it is important that rehabilitation efforts address this aspect of the patient's life. Our results elucidating strategies applied by women with SCI to compensate for loss of genital sensation and cope with physiological impairment during sexual activity may serve to help professionals in developing rehabilitation programmes for women with SCI.Spinal Cord advance online publication, 11 May 2010; doi:10.1038/sc.2010.51.
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| 7. |
- Lawton, G, et al.
(författare)
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Cross-cultural validity of FIM in spinal cord injury.
- 2006
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Ingår i: Spinal cord : the official journal of the International Medical Society of Paraplegia. - : Springer Science and Business Media LLC. - 1362-4393. ; 44:12, s. 746-52
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To analyse cross-culture validity of the Functional Independence Measure (FIM) in patients with a spinal cord injury using a modern psychometric approach. SETTINGS: A total of 19 rehabilitation facilities from four countries in Europe. PARTICIPANTS: A total of 647 patients at admission, median age 46 years, 69% male. METHODS: Data from the FIM, collected on inpatient admission, was fitted to the Rasch model. A detailed analysis of scoring functions of the seven categories of the FIM items was undertaken before to testing fit to the model. Categories were rescored where necessary. Fit to the model was assessed initially within country, and then in the pooled data. Analysis of differential item functioning (DIF) was undertaken in the pooled data for each of the FIM motor and social cognitive scales, respectively. Final fit to the model was tested for breach of local independence by principle components analysis (PCA). RESULTS: The present scoring system for the FIM motor and cognitive scales, that is a seven category scale, was found to be invalid, necessitating extensive rescoring. Following this, DIF was found in a number of items within the motor scale, requiring a complex solution of splitting items by country to allow for the valid pooling of data. Five country-specific items could not be retained within this solution. The FIM cognitive scale fitted the Rasch model after rescoring, but there was a substantial ceiling effect. CONCLUSIONS: Data from the FIM motor scale for patients with spinal cord injury should not be pooled in its raw form, or compared from country to country. Only after fit to the Rasch model and necessary adjustments could such a comparison be made, but with a loss of clinical important items. The FIM cognitive scale works well following rescoring, and data may be pooled, but many patients were at the maximum score.
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