RECAPDOC - a questionnaire for the documentation of rehabilitation care utilization in individuals with disorders of consciousness in long-term care in Germany: development and pretesting.

BACKGROUND: A multitude of different rehabilitation interventions and other specific health care services are offered for individuals with disorders of consciousness in long-term care settings. To investigate the association of those services and patient-relevant outcomes, a specific instrument to document the utilization of those services is needed. The purpose of this study was to develop such a questionnaire administered to caregivers in epidemiological studies or patient registries in Germany. METHODS: The development process of the RECAPDOC questionnaire was carried out in three steps. Step 1 consisted of a systematic literature review and an online-based expert survey to define the general content. Step 2 was an expert interview to evaluate the preliminary content of the questionnaire. Step 3 was a pretest including cognitive interviews with caregivers. After each step, the results were combined into a new version of the questionnaire. RESULTS: The first version of the questionnaire included items on utilization of medical care, medical aids, nursing and therapeutic care. The results of the expert interview led to the integration of five new items and the modification of six other items. The pretest led to some minor modifications of the questionnaire since it was rated as feasible and acceptable. The final questionnaire consisted of 29 items covering the domains "living situation", "social insurance status", "utilisation of home health care", "domestic services", "outpatient health care", "specific diagnostic measures", "adaptive technologies", "medical aids" and "utilization of therapies". Also the experience of family support and multidisciplinary collaboration of health professionals is covered. CONCLUSIONS: The developed questionnaire is a first step to make the situation of patients with disorders of consciousness in the long-term care setting accessible for evaluation in epidemiological studies and in the context of patient registries. However, further reliability and validity studies are needed.

Quality of evidence of rehabilitation interventions in long-term care for people with severe disorders of consciousness after brain injury: A systematic review.

OBJECTIVE: To characterize existing rehabilitation interventions for patients with disorders of consciousness in long-term care and to evaluate the quality of evidence of these interventions. DATA SOURCES: Databases MEDLINE, Embase, CINAHL, the Cochrane Library, CareLit and SoLit from January 2003 until July 2013. STUDY SELECTION: Studies were selected that focused on rehabilitation interventions for patients in a coma, vegetative state or minimally conscious state who were living in a long-term care setting. Interventions related to rehabilitation nursing, physical therapy, occupational therapy, and speech therapy were described. A total of 53 publications was included. DATA EXTRACTION: Two authors independently extracted the data and assessed the quality of reporting using the National Service Framework (NSF) for Long Term Neurological Conditions (LTNC). DATA SYNTHESIS: Out of all extracted rehabilitation interventions 12 categories were generated and described. Out of 53 publications 28 (52.8%) contained expert-based evidence and 25 (47.2%) presented research-based evidence. CONCLUSION: There are a multitude of different rehabilitation interventions for individuals with disorders of consciousness, which are established in clinical practice and supported by expert opinion. However, evidence regarding these interventions is weak and recommendations are strictly limited. The findings of this review may represent a basis for further research.

Systematic review of measures and their concepts used in published studies focusing on rehabilitation in the acute hospital and in early post-acute rehabilitation facilities.

PURPOSE: To identify outcome measures cited in published studies focusing on rehabilitation in the acute hospital and in early post-acute rehabilitation facilities, and to identify and quantify the concepts contained in these measures using the ICF as a reference. METHODS: Electronic searches of Medline, Embase, CINAHL, Pedro and the Cochrane Library from 1997 to March 2002 were carried out. In a first step, abstracts of the retrieved studies were checked and data on the outcome measures and certain characteristics of the included studies were extracted. In a second step, the items of the questionnaires and their underlying concepts were specified. These concepts were then linked to ICF categories using standardized linkage rules. RESULTS: From the 1,657 abstracts retrieved, 259 studies met the inclusion criteria. In a second step, 277 formal assessment instruments and 351 single clinical measures were retrieved. A total of 1,353 concepts were extracted from the clinical and technical measures. Ninety-six percent of these concepts could be linked to ICF categories. Fifty-six second-level ICF categories representing the concepts contained in the measures. Twenty-six (46%) of the 56 categories belong to the component Body Functions, five (9%) to the component Body Structures, and 25 (45%) to the component Activities and Participation. CONCLUSIONS: The ICF provides a valuable reference to identify and quantify the concepts of outcome measures focusing on rehabilitation in the acute hospital and in early post-acute rehabilitation facilities. Our findings indicate a need to define and to agree on 'what should be measured' in rehabilitation care to allow for a comparison of patient populations.