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Purpose: Multiple organizations like UN and WHO call for the collection of internationally comparable data on living and supply conditions of people with disabilities. Furthermore, reliable national data are necessary for ensuring appropriate care. Regarding patients with Spinal Cord Injury (SCI) in Germany, only data on diagnostics or therapeutic interventions is currently available. The International Spinal Cord Injury Survey aims at collecting reliable data of people with SCI in 21 countries and developing recommendations for actions to be taken by policy-makers and other decision-makers., Methods: In 2017, eight specialized SCI-centers across Germany sent a standardized questionnaire to their patients who had diagnosis of SCI, and were older than 18 years (n=5,598). The questionnaire could be completed paper-based or online., Results: 1,479 patients participated in the study and were included in data analysis. On average, participants were 55.3 years (SD=14.6) old, ¾ were male. The mean time of onset of paralysis was 13.9 years. Two thirds of the spinal cord injury causes were traumatic. In 51.2% SCI was classified as paraplegia. The most frequently cited health problem was sexual dysfunction. Medical treatment for this problem was rarely used. Serious environmental barriers were the inadequate accessibility of private households and public places. 42.5% of the respondents in working age were employed, which is 10% less than in Switzerland., Discussion: Serious problems in environmental barriers, medical care and labor market participation were identified for people with SCI. The results will be reported to and discussed with political decision makers and further actors to create solutions. This requires extensive efforts, like modification in building law and home support., Competing Interests: Die finanzielle Förderung erfolgte durch die Manfred-Sauer-Stiftung. Der Stifter ist selbst querschnittgelähmt und Hersteller von Inkontinenzhilfsmitteln. Die Autoren geben an, dass kein Interessenkonflikt besteht., (© Georg Thieme Verlag KG Stuttgart · New York.)

The guidelines (AWMF register number: 179-004) on neurogenic bowel dysfunction (NBD) in spinal cord injury of the German-speaking Medical Society for Paraplegiology is addressed to all persons who care for people with congenital or acquired paraplegia with NBD. In particular, doctors, nurses and therapists are addressed. The multiprofessionally developed guidelines (involving neurourologists, visceral surgeons, gastroenterologists, health and nursing staff, nutritionists and associated professional societies in the review process) provides practical support for the care of patients with NBD. Definitions and up to date knowledge on the diagnostics of NBD as well as on the necessary conservative bowel management are conveyed in order to ensure the competent treatment of patients with NBD. The concept of NBD and its clinical implications are described. Drug interventions and surgical procedures are explained in brief and recommendations are given. The main objective of the present guidelines is to prevent complications including fecal incontinence and constipation and thus to positively influence the quality of life of those affected. Helpful appendices, which can be used in everyday life, complete the guidelines., (© Springer Medizin Verlag GmbH, ein Teil von Springer Nature 2020.)

Introduction: A newly acquired spinal cord injury (SCI) has an impact on various aspects of a patients' functioning. Outcome measures represent an important component of initial rehabilitation to assess patients' overall status and their progress, simplify clinical communication and support clinical decision-making. The aim of this review was to create an evidence base for developing clinical practice guidelines using systematic literature review to evaluate assessment instruments used in acute/subacute SCI rehabilitation., Evidence Acquisition: PubMed, CINAHL, Cochrane Library and LIVIVO databases were searched using the MeSH terms and key words of the Spinal Cord Injury Research Evidence (SCIRE). Studies on outcome measures with patients in the acute/subacute phase of SCI, published in English or German from January 2013 until December 2018 were included. Two reviewers independently screened articles and when a consensus was not reached two further reviewers were consulted. To determine publication quality of systematic reviews, validation and observation studies, AMSTAR, COSMIN and STROBE checklists were applied., Evidence Synthesis: A total of 2533 records were retrieved, 71 potentially eligible articles identified, and 33 articles finally included. One validation and one observational study met all quality criteria. One systematic review received eight from a maximum of 11 points for publication quality (AMSTAR). Ten of 19 validation studies were deemed as "excellent" or "good" (COSMIN), but some were hampered by the low number of study participants. From the 29 reviewed assessments 28 were recommended and one was not. Seven of 13 observational studies received a rating equal or higher to 20 out of a maximum of 22 points (STROBE). Assessments covered neuro-musculoskeletal, sensory and pain, mental and skin structures and functions, as well as activity, participation and quality of life., Conclusions: In the field of initial SCI rehabilitation, scientifically sound assessments covering different aspects of the bio-psychosocial model of the ICF are available. According to COSMIN, validation studies struggled with quality, whereas observational studies and systematic studies performed well. The review results support the evidence-based selection of outcome measures for assessing the initial rehabilitation of patients with acute and subacute SCI. These results represent an update for recommendations for clinical guidelines on standardized rehabilitation outcome documentation.