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

Feasibility and psychometric properties of the German 12-item WHO Disability Assessment Schedule (WHODAS 2.0) in a population-based sample of patients with myocardial infarction from the MONICA/KORA myocardial infarction registry

Background: The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) provides a standardized assessment of functioning and disability in individuals with any kind of disease. So far, data on feasibility and psychometric properties of the 12-item WHODAS 2.0 in patients with acute myocardial infarction (AMI) are not available. Thus, the objective of this study was to investigate feasibility and psychometric properties of this questionnaire in a population-based sample of persons with AMI. Methods: The sample consisted of 2077 persons (age 35-85 years) with AMI from the population-based MONICA/KORA Myocardial Infarction Registry, Augsburg, Germany, who responded to a postal follow-up survey in 2011. Feasibility was assessed by the number of missing WHODAS 2.0 items and analyzed using multivariate logistic regression modeling. Psychometric properties were determined using Rasch analysis. It included testing of unidimensionality, monotonicity and local independency, Partial Credit Model (PCM) fitting, and testing for Differential Item Functioning (DIF). Concurrent validity was tested by a linear additive model predicting the WHODAS disability score based on a number of independent variables. Results: For 96% of the subjects, the WHODAS disability score could be computed. Incomplete questionnaires were significantly more common in older persons (Odds ratio (OR) 1.03, 95% confidence interval (CI) 1.01-1.05) and persons with bad/very bad self-rated health (OR 2.55, 95% CI 1.28-5.06). The assumptions of Rasch modeling were fulfilled. The PCM revealed disordered thresholds for nine of the 12 items. However, it was possible to achieve a correct order of thresholds by collapsing the five response options to three. The item thresholds covered the whole range of the continuum, indicating that items are appropriate to differentiate between persons across the whole continuum of disability. No DIF was detected for any of the tested variables such as age, sex, and education. Significantly higher disability scores were found in persons with comorbidities and impaired overall health status, confirming concurrent validity. Conclusions: The 12-item WHODAS 2.0 is a feasible, nonbiased, and valid instrument for application in persons with AMI. Shortcomings refer to unordered thresholds of most items. Further studies are required in order to confirm these findings

Additional file 4: of 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

English translation of the RECAPDOC questionnaire. (PDF 779 kb

Additional file 2: of 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

Interview guide for the expert interviews with physicians. (DOCX 13 kb

Additional file 1: of 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

Questionnaires of the Delphi survey (round 1 & 2). (DOCX 15 kb

Additional file 3: of 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

German version of the REACPDOC questionnaire. (PDF 684 kb