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- 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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| 3. |
- Roaldsen, K. S., et al.
(författare)
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Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI)
- 2022
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 15:2, s. 395-403
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with >= 20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.
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| 8. |
- Augutis, M, et al.
(författare)
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Pediatric spinal cord injury in a subset of European countries.
- 2006
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 44:2, s. 106-12
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Tidskriftsartikel (refereegranskat)abstract
- STUDY DESIGN: Postal survey.SETTING: A total of 19 countries in Europe.OBJECTIVES: Firstly, to collect information about incidence and systems of care for pediatric spinal cord injury (pedSCI); including prevention, initial care and follow-up in a subset of European countries. Secondly, to initiate a network of involved professionals for exchange of information and development of research and care programs.METHODS: A short semi-structured questionnaire was sent to respondents working with spinal cord injury (SCI) in 19 countries in Europe.RESULTS: Only in Portugal and Sweden, is the incidence of pedSCI (fatal injuries included) established, that is 27 children/million children/year and 4.6 children/million children/year, respectively. For the other countries, the estimated incidence of pedSCI (nonfatal injuries) varied from 0.9 to 21.2 children/million children/year in the age group of 0-14 years. Although the incidence varies considerably, pedSCI is rare throughout Europe. The management differs between the countries depending on the age of the child and the local organization of health care.CONCLUSIONS: The survey confirms that pedSCI is rare. In order to establish high-quality standardized care, further integration of knowledge in this area is needed throughout Europe. The contacts initiated by this survey may be used to create an international network serving as a reference for health professionals, researchers and families, thereby possibly alleviating some of the unwanted variations of care identified in this study.
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| 9. |
- Augutis, M, et al.
(författare)
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Pediatric spinal cord injury in Sweden : incidence, etiology and outcome.
- 2003
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 41:6, s. 328-36
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Tidskriftsartikel (refereegranskat)abstract
- STUDY DESIGN: Retrospective descriptive study.OBJECTIVES: To assess incidence, causes and early outcome of traumatic spinal cord injury (SCI) among children in Sweden, thereby identifying high-risk groups and situations as a basis for preventative measures and improved care.METHODS: Data from population registers, County Habilitation Centers as well as from informal sources were used to estimate the incidence of SCI in Sweden during the years 1985-1996 among children aged 0-15 years. Contacts with the treating hospitals, reviews of medical records and/or personal interviews were used to verify primary data. In total, 92 children were thus identified.RESULTS: The incidence was found to be 4.6/million children/year (95% CI 3.6-5.5). When excluding prehospital fatalities, the incidence was 2.4 (95% CI 1.8-3.1). The main cause of injury among fatalities was traffic accidents. Associated injuries occurred in 41% of the children. Among survivors (10-15 years), sports-related injuries (43%) were as common a cause as traffic accidents (39%). The survivors were treated in 18 different hospitals.CONCLUSION: Pediatric SCI in Sweden is rare, presumably because of effective primary prevention. Preventative measures should be further differentiated for each age group of children in accordance with their differing risk profiles. In contrast to the effective preventative measures that have been implemented in Sweden, care of these patients is still too fractionated and decentralized for sufficient specialization to emerge.
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| 10. |
- Augutis, M, et al.
(författare)
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Pediatric spinal cord injury in Sweden; how to identify a cohort of rare events.
- 2003
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Ingår i: Spinal Cord. - : Springer Science and Business Media LLC. - 1362-4393 .- 1476-5624. ; 41:6, s. 337-46
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Tidskriftsartikel (refereegranskat)abstract
- STUDY DESIGN: Register study enhanced and verified by medical records and personal interviews and examinations.SETTINGS: Sweden.OBJECTIVES: To define a method of identifying a study population of rare events. To point out the relative importance of every step, an example is given of identifying persons who sustained traumatic spinal cord injury (SCI) in childhood.METHODS: Cases were identified in seven steps that all needed to be fulfilled, from definition of selection criteria through combination of several data sources, to the use of several verification methods.RESULTS: Initial screening by registers identified 384 possible cases, which however were found by subsequent analysis to include a large number of incorrect cases. At completion of all analytic steps, 35 living cases could be fully verified and 14 deceased cases could be partially verified.CONCLUSIONS: Registers offer a practical initial source for study population identification. The screening of International Classification of Diseases codes defining SCI only included less than 30% of 'true' SCIs. Subsequently, further refinement and quality control is necessary in order to ensure validity. Such further verification is time-consuming, but nevertheless necessary in order to verify a true cohort.
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| 12. |
- Benninger, I, et al.
(författare)
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Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration
- 2022
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Ingår i: Children (Basel, Switzerland). - : MDPI AG. - 2227-9067. ; 9:3
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, “young people”) with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. “Having fun”, “relation to family members”, and “physical functioning” were found to be highly important for all young people. “Physical functioning”, “prevention of pressure injuries”, “general health”, and “bowel management” received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples’ and caregivers’ perspectives should be included in the selection of research topics.
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| 14. |
- 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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| 15. |
- McIntyre, Amanda, et al.
(författare)
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A Systematic Review of the Scientific Literature for Rehabilitation/Habilitation Among Individuals With Pediatric-Onset Spinal Cord Injury
- 2022
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Ingår i: Topics in Spinal Cord Injury Rehabilitation. - : AMER SPINAL INJURY ASSOC. - 1082-0744 .- 1945-5763. ; 28:2, s. 13-90
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Forskningsöversikt (refereegranskat)abstract
- Objectives: To conduct a systematic review to examine the scientific literature for rehabilitation/habilitation among individuals with pediatric-onset spinal cord injury (SCI). Methods: A literature search of multiple databases (i.e., PubMed/MEDLINE, CINAHL, EMBASE, PsychINFO) was conducted and was filtered to include studies involving humans, published as full-length articles up to December 2020, and in English. Included studies met the following inclusion criteria: (1) >= 50% of the study sample had experienced a traumatic, acquired, nonprogressive spinal cord injury (SCI) or a nontraumatic, acquired, noncongenital SCI; (2) SCI onset occurred at <= 21 years of age; and (3) sample was assessed for a rehabilitation/habilitationrelated topic. Studies were assigned a level of evidence using an adapted Sackett scale modified down to five levels. Data extracted from each study included author(s), year of publication, country of origin, study design, subject characteristics, rehabilitation/habilitation topic area, intervention (if applicable), and outcome measures. Results: One hundred seventy-six studies were included for review (1974-2020) with the majority originating from the United States (81.3%). Most studies were noninterventional observational studies (n = 100; 56.8%) or noninterventional case report studies (n = 5; 2.8%). Sample sizes ranged from 1 to 3172 with a median of 26 (interquartile range [IQR], 116.5). Rehabilitation/habilitation topics were categorized by the International Classification of Functioning, Disability and Health (ICF); most studies evaluated ICF Body Function. There were 69 unique clinical health outcome measures reported. Conclusion: The evidence for rehabilitation/habilitation of pediatric-onset SCI is extremely limited; nearly all studies (98%) are level 4-5 evidence. Future studies across several domains should be conducted with novel approaches to research design to alleviate issues related to sample sizes and heterogeneity.
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