Which factors have an association to the Quality of Life (QoL) of people with acquired Spinal Cord Injury (SCI)? A cross-sectional explorative observational study.

STUDY DESIGN: Cross-sectional explorative observational study. OBJECTIVES: To identify factors which have an association to the self-perceived Quality of Life (QoL) for persons with acquired spinal cord injury (SCI). SETTING: Eight specialized SCI-centers in Germany. The GerSCI survey is the German part of the International Spinal Cord Injury Survey (InSCI). METHODS: Self-disclosure questionnaire, created from the InSCI group, translated and adapted for Germany. The questionnaire collects a very broad range of data and, and due to its design as a self-report, is particularly suitable for the analysis on QoL. Because of the content, which is binding for all participating states, it allows a direct comparability of the results. Included in Germany were 1479 persons with acquired SCI aged 18 years and older. RESULTS: Various factors were identified with high associations to QoL, including changeable and unchangeable ones, such as those of particular importance: pain, sleep problems, sexual dysfunction, age, and time since onset of SCI. Some results confirmed reports of previous studies, others were surprising. CONCLUSION: this study provides an important basis for the planned analysis of the InSCI participating countries in the 6 WHO regions. Germany was able to contribute the largest study population. The concrete study design of InSCI allows us to directly compare data and helps us to improve ourselves within the framework of a "learning health system". Medical measures can be orientated towards the found results, in order to ensure the best possible care and support by the therapeutic team, individually adapted to the person, place of residence and impairment.

Promoting factors and barriers to participation in working life for people with spinal cord injury.

BACKGROUND: It is still difficult for people with physical impairments to be and remain equally integrated into the labour market. For this reason, the question of occupational activity has explicitly been examined by the German Spinal Cord Injury Survey (GerSCI) in order to identify barriers and facilitators for labour market participation. METHODS: Cross-sectional explorative observational study. The GerSCI survey is the German part of the International Spinal Cord Injury Survey (InSCI). Using survey data from persons recruited at eight specialised SCI-centres in Germany. PARTICIPANTS: 1.479 persons with Spinal Cord Injury (SCI) aged 18 years and older. RESULTS: In a self-disclosure questionnaire, persons with SCI show themselves as a professionally well-educated and highly motivated group with most of them aiming at gainful employment and considering themselves fit for work. Many changeable and non-changeable factors have been found, which showed a high correlation with the return to work after acquired SCI. CONCLUSION: Education and pain belong to the most critical factors and thereby possible approaches to increase the level of employment, which is essential and highly relevant not only for earning money but also for self-confidence and social integration. SCI has many dimensions in itself; support also should be multidimensional. Study results might help to improve participation.

European initiative for the application of the International Classification of Service Organization in Health-related Rehabilitation (ICSO-R).

BACKGROUND: The International Classification of Functioning, Disability and Health (ICF) should be used as the framework for the development of a clinical assessment schedule for clinical quality management of health-related rehabilitation services. For the description of rehabilitation services a working group of the ISPRM-WHO-Liaison Committee proposed an instrument called "International Classification System for Service Organization in Health-related Rehabilitation" or ICSO-R. AIM: To test the applicability and feasibility of ICSO-R to describe rehabilitation services and to propose further improvements. DESIGN: A workshop was held. SETTING: SPF (Swiss Paraplegic Research) in Nottwil, January 2016. POPULATION: Six working groups, composed of delegates from UEMS PRM (Physical and Rehabilitation Medicine Section and Board of the European Union of Medical Specialists) and experts from other rehabilitation professions. METHODS: Each working group selected an existing service of a predefined category (one acute, three post-acute and two long-term rehabilitation services). The instructions were: 1) make a narrative description of an exemplary service; 2) describe the exemplary service using the dimensions and categories of ICSO-R; 3) comment on feasibility of the ICSO-R table, on shortcomings, and make suggestions for improvement. The narrative and ICSO-R descriptions were analyzed and compared, and recommendations were made for modification of ICSO-R. RESULTS: The narratives were very heterogeneous and none comparable. ICSO-R use was feasible and significantly increased precision and comparability of the descriptions of existing rehabilitation services. Proposals for improvement were made, for example the addition of lacking categories. Suggestions were made for clarification of a number of characteristics, including a taxonomy with value sets. CONCLUSIONS: The UEMS PRM workshop on the description of health-related rehabilitation services for use in a clinical quality management schedule clearly demonstrated feasibility and applicability of ICSO-R, showing more precise and comparable descriptions as compared to the narratives. However, in a next version some modifications should be made to improve clarity. CLINICAL REHABILITATION IMPACT: It is recommended to use ICSO-R to describe and compare existing as well as model rehabilitation services for benchmarking and implementation into health systems worldwide. The ISPRM-WHO Liaison committee working group will further modify and improve ICSO-R.