Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI).

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.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.

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.

Return to work after specialized rehabilitation-An explorative longitudinal study in a cohort of severely disabled persons with stroke in seven countries: The Sunnaas International Network stroke study.

INTRODUCTION: Stroke may impose disabilities with severe consequences for the individual, with physical, psychological, social, and work-related consequences. The objective with the current study was to investigate to what extent persons with stroke were able to return to work, to maintain their financial situation, and to describe the follow-up services and participation in social networks and recreational activities. METHODS: The design was a prospective, descriptive study of specialized stroke rehabilitation in nine rehabilitation centers in seven countries. Semistructured interviews, which focused on the return to work, the financial situation, follow-up services, the maintenance of recreational activities, and networks, were performed 6 and 12 months post discharge from rehabilitation. RESULTS: The working rate before the onset of stroke ranged from 27% to 86%. At 12 months post stroke, the return to work varied from 11% to 43%. Consequently, many reported a reduced financial situation from 10% to 70% at 6 months and from 10% to 80% at 12 months. Access to postrehabilitation follow-up services varied in the different countries from 24% to 100% at 6 months and from 21% to 100% at 12 months. Physical therapy was the most common follow-up services reported. Persons with stroke were less active in recreational activities and experienced reduced social networks. Associations between results from the semistructured interviews and related themes in LiSat-11 were small to moderate. The study shows that education, age, and disability are predictors for return to work. Differences between countries were observed in the extent of unemployment. CONCLUSIONS: In this international multicentre study, return to work after severe stroke and specialized/comprehensive rehabilitation was possible, depending on the extent of the disability, age, and education. Altered financial situation, reduced social networks, and reduced satisfaction with life were common psychosocial situations for these patients.

Factors enhancing activities of daily living after stroke in specialized rehabilitation: an observational multicenter study within the Sunnaas International Network.

BACKGROUND: Stroke may lead to serious, long-term disability. Consequently, many individuals with stroke will be in need of rehabilitation, and some of specialized rehabilitation. The content and organization of rehabilitation vary within and between countries, reflecting the preferences, customs, traditions, and values of a society or community, that may have an impact on outcomes. The main aim of the present study was to evaluate the influence of team models in specialized rehabilitation on outcomes as measured by stroke patients' performance in activities of daily living (ADL), at a standardized time and at discharge in the various specialized rehabilitation clinics. Secondary aims were to identify explanatory factors for possible differences in ADL changes at standardized time points. DESIGN: A prospective descriptive cross-sectional explorative, multicenter study. SETTING: Specialized rehabilitation clinics in Norway, China, the USA, Russia, Israel, Palestine, and Sweden, for a total of nine clinics. POPULATION: Persons with stroke. METHODS: Outcomes measures were the modified Rankin Scale (mRS) and the National Institute of Health Stroke Scale (NIHSS), both on admission and at discharge from the inpatient rehabilitation unit, and Barthel Index (BI) or alternatively Functional Independence Measure (FIM), on admittance, 18-22 days into rehabilitation, at discharge, and at 6 and 12 months after discharge. RESULTS: In total 230 stroke patients from nine clinics were recruited. There were significant differences in change scores of ADL from admittance to standardized time point 18-22 days into rehabilitation, (P<0.001, R2=0.19) and when controlled for baseline NIHSS and mRS (P<0.001, R2=0.18; P=0.01, R2=0.9 respectively). Analysis divided into intra-, multi- and interdisciplinary models showed significant differences at 18-22 days (P=0.02) and at discharge (P<0.001), indicating a more favorable outcome in ADL with the multi-disciplinary model. The linear regression analysis explained 55% of the changes in ADL (R2=0.55) at the standardized time point and 48% (R2=0.48) at discharge. Main explanatory factors were disability (mRS) and severity (NIHSS), team models, hours in therapy, and location at discharge. ADL was maintained for the majority of participants at 6 and 12 months post discharge. The correlations mRS/ADL (r=-0.68, P<0.0001), NIHSS/ADL (r=-0.55, P<0.0001) and NIHSS/mRS (r=0.46, P<0.0001) disclosed medium to large associations at 18-22 days into rehabilitation. CONCLUSIONS: The study indicates that the organization of services in specialized rehabilitation after stroke has a major impact on improvement of ADL outcomes. Main positive predictive factors were models of teamwork, with the multidisciplinary model as most beneficial, and concentrated hours of therapy. Negative predictors were the level of baseline severity and disability post stroke. CLINICAL REHABILITATION IMPACT: The results indicate that organization of services should be at target to optimize patients' outcomes in rehabilitation. Furthermore, that concentrated hour's related to specific goals in therapy are preferable to optimize functional recovery.

Life satisfaction in persons with severe stroke - A longitudinal report from the Sunnaas International Network (SIN) stroke study.

INTRODUCTION: The overall aim of the present study was to explore perceived life satisfaction in persons with stroke, from admission to specialised rehabilitation until follow up 1 year post-discharge. The secondary aim was to evaluate possible external and internal explanatory factors for perceived life satisfaction. PATIENTS AND METHODS: A prospective, descriptive study of specialised rehabilitation of persons with stroke. Persons with a primary diagnosis of stroke were enrolled in the study. RESULTS: Overall, total score on LiSat-11 showed that life was perceived as satisfying by 11% on admission, 21% at discharge, 25% at 6 and 31% at 12 months after discharge from rehabilitation, reported by 230 participating persons with stroke. Repeated measurement indicated significant differences of total life satisfaction between clinics, also when controlled for disability and severity. The items "sexual life," "health," and "vocational life"/"financial" were most dissatisfying at the various reported time points. The linear regression analysis revealed an equal amount of internal and external explanatory factors at the different time points, explaining between 16% and 41% of the variations. DISCUSSION AND CONCLUSION: The perceived life satisfaction was reported as low/dissatisfying at the four stated time points in all the participating clinics. Four items were especially vulnerable post-stroke: vocational situation, sexual life, physical health and mental health. Both internal and external factors contributed to life satisfaction, such as gender, severity of stroke, marital status, country, models of rehabilitation, occupational status, length of stay (LOS), number of therapies and hours in therapy. However, there were significant differences between clinics, indicating that unidentified factors may also influence life satisfaction.

Specialized stroke rehabilitation services in seven countries: Preliminary results from nine rehabilitation centers.

BACKGROUND: There is a lack of defined levels of rehabilitation, indicating possibly random content and access to specialized services. AIMS AND/OR HYPOTHESIS: The aim of the study was to perform a multinational descriptive study of specialized rehabilitation in persons with stroke, to elucidate what the different centers define as prerequisites for specialized rehabilitation, and to analyze whether these descriptions map to currently applied standards or constructs of specialized rehabilitation. A secondary aim was to look for similarities and differences between therapies and services for persons with stroke in the sub-acute stage in the different institutions. METHODS: Descriptive data of the collaborating centers regarding structure and processes of services were recorded and compared with the British Society of Rehabilitation Medicine and Specialized Services National Definitions sets. RESULTS: Comparisons of the definitions showed that all centers admitted severely disabled persons with stroke, in need of complex rehabilitation, and provided high levels of physical services, with specialized equipment and facilities. However, funding, size, university affiliation, quality accreditation, staffing levels, specialist training, cognitive and vocational services, coordination of the professional teams, admission procedures, time and type of therapies, estimated length of stay, and follow-up procedures differed between the centers. CONCLUSION: This multinational study of specialized stroke rehabilitation centers shows that a universal definition of specialized rehabilitation is possible, even in quite different countries and settings, in terms of general principles. There were however differences in structures and procedures, which may influence patients' outcomes, indicating a need for refinement of the definitions to be globally applicable.