The German heiQ™ is comprehensible for German-speaking patients suffering from different types of chronic conditions; it assesses relevant outcomes of self-management programs in a reliable and valid manner. Further studies involving its practical application are warranted.
Measuring quality of life is increasingly considered as an outcome criterion in clinical studies. In order to assess quality of life, disease specific as well as generic instruments are used. Generic instruments make it possible to compare outcomes among different indications, but for this purpose a test of the factorial validity of the method in each indication is necessary. In this study, the generic short form 12 was administered to a sample survey of 545 patients with inflammatory-rheumatic disease. Patients data from three scientific rehabilitation research projects were pooled for the analysis. First the structure was tested using confirmatory structural equation modeling. In a second step age and gender specific values were calculated and compared to norm data from the German National Health Survey 1998. The questionnaire's structure is acceptable and comparable to international results. Confirmatory analyses support a model allowing covariations of error terms between items of the same subdimensions. The two latent dimension are highly correlated. Crossloadings of items from different subdimension does not improve the model fit significantly. Comparisons with the German norm data shows that the patients are impaired within their physical and mental dimension of subjective health. Higher impairment is evident especially on the physical sumscale. Women show higher impairment in both scales. However no effects of age can be detected. The SF-12 could be used with trust in the study of patients with inflammatory-rheumatic diseases. But physical and mental health can not be seen as independently.
The generic SF-36 show sufficient factorial validity. From this point of view there is no objection to using the SF-36 in patients with rheumatic diseases. Indeed the use of the SF summary scales as a representation of (uncorrelated) physical and mental health must be questioned critically.
Patient education is considered to be a major feature of medical rehabilitation in chronic disorders. The rehabilitation sciences research programme funded by the German Pension Insurance scheme and the Federal Ministry of Education and Research comprises a considerable number of evaluation studies carried out with methodological rigor. Over two funding periods, patient education programmes were developed and evaluated with respect to their medical, psychosocial, occupational and economic effects. In this article, a conceptual definition of patient education is presented. Then, the aims and results of ten patient education studies of the funding programme as well as of several implementation projects are described. When integrating these results into previous research taking both a national and international perspective, it can be concluded that patient education programmes are effective regarding medical psychosocial and socio-economic outcomes, although effects sizes may vary. However, in some disorders the state of the research is still unsatisfactory and results are either scarce or heterogeneous. In particular, it is unclear whether such programmes are widely used in medical rehabilitation on a routine basis. Several education programmes provide train-the-trainer opportunities, others are still in the process of development or evaluation. Implementation projects such as those described in the article are aimed at closing these gaps and disseminating research results into the practice of rehabilitation.
Due to the chronic course, rheumatic diseases may be associated with both long-lasting pain and movement limitations. Those afflicted by these disorders thus face continuous challenges regarding both adapting to their illness as well as changing their lifestyle habits, for example increasing the physical activity levels. However, patient education may provide patients with the competencies they need to cope with their illness and modify their behavior. Therefore, patient education programs are core elements of rehabilitation in rheumatology. The German Society for Rheumatology has performed pioneering work concerning conceptualization and evaluation of standardized educational programs. In this article some more recent developments and up to date standards for contents and didactics of self-management programs are presented. Empowerment may be considered the overriding aim of these programs, i.e. enabling patients to make informed decisions in situations where their health is involved. Patient-centered didactic methods as used in state of the art concepts mirror the empowerment approach. To foster sustainability of lifestyle changes, detailed planning of behavioral modifications is recommended, thus increasing the chance of transferring changes adopted during rehabilitation into everyday living. Such methods have been proven to be effective and are employed in the updated education concept for patients with fibromyalgia syndrome, which is described here as an example. The Centre for Patient Education offers support in updating and evaluating patient education concepts.
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