Guideline for the management of neurogenic bowel dysfunction in spinal cord injury/disease.

INTRODUCTION: Almost all people with spinal cord injury/disease (SCI/D) suffer from neurogenic bowel dysfunction (NBD), with a considerable impact on quality of life. The Association of the Scientific Medical Societies in Germany (AWMF e.V.) guideline for NBD in SCI/D aims to provide practice-oriented support for the care of patients with NBD resulting from congenital or aquired SCI/D. The guideline describes the diagnosis and bowel management of NBD in people with SCI/D. Thus, treatment processes in acute medical care and rehabilitation as well as for lifelong aftercare are presented. METHODS: The present guideline was developed under the leadership of the German-speaking Medical Society for Paraplegiology in a multiprofessional interdisciplinary guideline team. To exceed the level of expert recommendations, consensus was reached within the framework of a structured nominal group process in defined steps under neutral moderation considering the criteria of the German guideline development instrument (DELBI). RESULTS: Individual bowel management must be developed on the basis of an adequate diagnosis and considering the different lesion types. Due to the multifactorial influenceability of the intestine and the individual neurological deficit, a simple to-do checklist is not effective. Various and complex bowel management programmes are the basis of the treatment of NBD. CONCLUSIONS: Guidelines can only be successful in so far as they are applied in everyday life. Of course, the selection and application of the measures described must always take into consideration the individual situation of the person concerned, and the correct application is always a prerequisite for success.

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.

[Guidelines: neurogenic bowel dysfunction in spinal cord injury (long version)]. / Leitlinie: Neurogene Darmfunktionsstörung bei Querschnittlähmung (Langfassung): Entwicklungsstufe: S2k, AWMF-Register-Nr.: 179-004.

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.

Perceived environmental barriers for people with spinal cord injury in Germany and their influence on quality of life.

OBJECTIVE: The German Spinal Cord Injury Survey is part of the International Spinal Cord Injury Survey, which aims to collect data about the life experience of persons with spinal cord injury worldwide. This paper reports on the perceived environmental barriers of the German study population and their associations with quality of life. DESIGN: Cross-sectional explorative observational study using survey data. PARTICIPANTS: A total of 1,479 persons with spinal cord injury aged 18 years and older. METHODS: After descriptive analyses, exploratory factor analysis was used to build groups of environmental barriers. Logistic regressions were performed to assess correlates of perceived environmental barriers. Spearman's correlations were used to analyse the association between perceived barriers and quality of life. RESULTS: Barriers regarding infrastructure had a relatively large impact. Barriers in relation to people's attitudes towards spinal cord injury and the equipment of people with spinal cord injury had a relatively small impact on the lives of people with spinal cord injury. Several subpopulations showed a higher risk in experiencing barriers. Quality of life decreased with increasing experience of barriers. CONCLUSION: The most life-hardening barriers were identified related to infrastructure, a category in which most barriers are modifiable, for example, buildings or transportation.

Utilization of Outpatient Physical and Occupational Therapy in People With Spinal Cord Injury in Germany: Results of the German Spinal Cord Injury Survey.

OBJECTIVE: The aim of the study was to assess factors determining the utilization of physical and occupational therapy in people with spinal cord injury. DESIGN: Data from the German Spinal Cord Injury study conducted in 2017 were analyzed. The 12-mo prevalence of physical therapy and occupational therapy utilization was determined. To identify underlying determinants, multivariable logistic regression was used. RESULTS: Of 1479 participants (response = 26.4%), 72.9% were male, with a mean (SD) age of 55.3 (14.6) yrs and a mean (SD) time since injury of 14.0 (12.0) yrs; 51.2% were people with paraplegia and 66.3% had an incomplete spinal cord injury. In the past 12 mos, 78.1% received physical and 29.3% occupational therapy. Physical therapy and occupational therapy were significantly associated with time since spinal cord injury occurrence, participation in lifelong care programs, and electric wheelchair dependency. Spinal cord injury characteristics, level of impairment, and time since spinal cord injury had a greater impact on occupational therapy than on physical therapy utilization. CONCLUSIONS: The use of physical therapy and occupational therapy is much higher in Germans with spinal cord injury than in the general population and in people with similar neurological conditions. Further research should focus on the frequency of use and the types of interventions. Guidelines for lifelong care should include recommendations on physical therapy and occupational therapy.

[Spinal Cord Injury in Germany - a Survey on the Living and Care Situation of People with Spinal Cord Injury]. / Querschnittlähmung in Deutschland ­ eine Befragung zur Lebens- und Versorgungssituation von Menschen mit Querschnittlähmung.

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.

A systematic review of outcome measures in initial rehabilitation of individuals with newly acquired spinal cord injury: providing evidence for clinical practice guidelines.

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.

Rehabilitation Services Provision and Payment.

Persons with spinal cord injury (SCI) experience disability and have significant need for rehabilitation. To deliver appropriate rehabilitation, interventions and programs suitable services must exist. A prerequisite for system improvement is a description of rehabilitation services. The aim of this paper was to develop a rehabilitation service framework for SCI. Additionally, principles and models of payment of rehabilitation services will be discussed. Health-related rehabilitation services should be available along the continuum of care and implemented at all levels of health care. The three most important types of services are acute, postacute, and long-term rehabilitation services. Health-related rehabilitation services for patients with SCI must be able to provide high-quality equipment and a well-trained, highly specialized and multiprofessional team of rehabilitation workers. The principles of payment for SCI rehabilitation services vary according to the organization of health care systems, which primarily depends on the sources of money (eg, from national health care systems, other health insurances, or out of pocket). Funding systems and payment criteria may influence service provision and justice in service delivery. It is important to analyze the provision of rehabilitation services and the related funding system using uniform assessment and evaluation tools.