Active Rehabilitation-a community peer-based approach for persons with spinal cord injury: international utilisation of key elements.

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.

Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.

STUDY DESIGN: In 2014, the adult spinal cord injury (SCI) common data element (CDE) recommendations were made available. This project was a review of the adult SCI CDE for relevance to children and youth with SCI. OBJECTIVES: The objective of this study was to review the National Institute of Neurologic Disorders and Stroke (NINDS) adult SCI CDEs for relevance to children and youth with SCI. SETTING: International. METHODS: The pediatric working group consisted of international members with varied fields of expertise related to pediatric SCI. The group convened biweekly meetings for 6 months in 2015. All of the adult SCI CDEs were reviewed, evaluated and modified/created for four age groups: 0-5 years, 6-12 years, 13-15 years and 16-18 years. Whenever possible, results of published research studies were used to guide recommendations. In the absence of empirical support, grey literature and international content expert consensus were garnered. Existing pediatric NINDS CDEs and new CDEs were developed in areas where adult recommendations were not appropriate. After internal working group review of domain recommendations, these pediatric CDEs were vetted during a public review from November through December 2015. RESULTS: Version 1.0 of the pediatric SCI CDEs was posted in February 2016. CONCLUSION: The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.

Coping strategies recalled by young adults who sustained a spinal cord injury during adolescence.

STUDY DESIGN: Qualitative study. OBJECTIVE: To determine categories of coping the first year after injury used by 24 young adults who sustained a spinal cord injury (SCI) during adolescence (11-15 years). SETTING: Sweden. METHODS: Content analysis using the existing theories of coping as a framework, including the instrument BriefCOPE-a deductive category application. The analysis looked critically at comments in the interviews that reflected attempts to cope with the injury during the first post-injury year. RESULTS: All 14 of the categories of coping described by the BriefCOPE were included in the interviews at least once, except 'self-blame', which was not used by any interviewee. In addition to the predefined categories of the BriefCOPE, three new coping categories emerged from the interviews: fighting spirit, downward comparison and helping others. CONCLUSIONS: Adolescents who sustain SCIs use a variety of strategies to help them to cope with the consequences of the injury. Many of these coping strategies are similar to those used by others facing stresses, but it is instructive to hear, in their own words, how young adults recall the coping strategies they used as adolescents when they were injured and also how they conceptualized the process of coping. This information can be useful in helping future patients.

Pediatric spinal cord injury in a subset of European countries.

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.

Pediatric spinal cord injury in Sweden: incidence, etiology and outcome.

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.

Pediatric spinal cord injury in Sweden; how to identify a cohort of rare events.

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.