Involving patients as research partners exemplified by the development and evaluation of a communication-skills training programme (KOKOS-Rheuma).

Despite widespread recommendations for involving patient research partners (PRPs), there is little information about how patients have been involved in research. Our aim was to describe and assess the contributions of four PRPs in a project on communication-skills training funded by Deutsche Rheuma-Liga Bundesverband e. V. (German League Against Rheumatism [GLR] is a patient organisation for people with rheumatic and musculoskeletal diseases). The PRPs' participation was beneficial with regards to content and organisation. Thanks to their participation, we could enlarge our sample by over a third, and they contributed their own ideas to the training. Four PRPs added their perspective of various regional organisations. Outside this project, they were also very active within GLR and experienced in managing their rheumatic disease. To achieve more representativeness, future studies might also employ strategies to engage individuals with less experience in dealing with their disease, e.g. newly diagnosed patients. While the collaboration between PRPs and researchers proved very successful, more regular discussions about tasks and responsibilities would be worthwhile.

Perceived health of patients with common variable immunodeficiency - a cluster analysis.

Common variable immunodeficiency (CVID) is a complex disease with various influences on perceived health, which correlate with different outcomes, including new morbidity and mortality. Our hypothesis was that CVID patients fall into distinct clusters of perceived health which can inform care. Ward hierarchical cluster analysis and K-means cluster analysis were performed on data of 209 CVID patients to identify subgroups regarding their self-reported physical and mental health status, assessed by the physical (PCS) and mental component scores (MCS) of the Short Form-12 (SF-12). Four clusters of CVID-patients were identified. Cluster 1 was the largest cluster, characterized by a relatively high physical and mental health status (44·0%). In contrast, cluster 2 (21·1%) included patients with low physical and mental health status. Clusters 3 and 4 were mixed groups with high mental and low physical health (15·8%) and vice versa (19·1%). Significant differences between the clusters were found for patient-reported outcomes such as work ability and health literacy, but not for CVID-associated complications such as enteropathy, interstitial lung disease, granulomatosis, lymphadenopathy and autoimmune cytopenia or laboratory parameters such as immunoglobulin levels or B cell-based classification. The results suggest different subgroups of CVID patients with contrasting individual needs which, surprisingly, did not differ in clinical or laboratory characteristics. The main finding of this study is that patients with CVID fall into four distinct clusters according to perceived health, which are largely independent of CVID complications.

[Memorandum IV: Theoretical and Normative Grounding of Health Services Research]. / Memorandum IV: Theoretische und normative Fundierung der Versorgungsforschung.

With Memoranda and other initiatives, the German Network for Health Service Research [Deutsches Netzwerk Versorgungsforschung e.V. (DNVF)] is fostering the methodological quality of care research studies for years. Compared to the standards of empirical research, questions concerning the role and function of theories, theoretical approaches and scientific principles have not been taken up on its own. Therefore, the DNVF e.V. has set up a working group in 2013, which was commissioned to prepare a memorandum on "theories in health care research". This now presented memorandum will primarily challenge scholars in health care services research to pay more attention to questions concerning the theoretical arsenal and the background assumptions in the research process. The foundation in the philosophy of science, the reference to normative principles and the theory-bases of the research process are addressed. Moreover, the memorandum will call on to advance the theorizing in health services research and to strengthen not empirical approaches, research on basic principles or studies with regard to normative sciences and to incorporate these relevant disciplines in health services research. Research structures and funding of health services research needs more open space for theoretical reflection and for self-observation of their own, multidisciplinary research processes.

[Burdens at Admission, Short-term Effects and Predictors of Health Status at Discharge among 1 803 Patients with Fibromyalgia Syndrome]. / Eingangsbelastungen, kurzfristige Reha-Effekte und Prädiktoren des Entlassungsstatus bei 1 803 Patientinnen mit Fibromyalgie-Syndrom.

Objective: Taking Fibromyalgia syndrome (FMS) as an example, the article illustrates a problem that to our knowledge has not been addressed in rehabilitation research so far: According to our large dataset, a sizeable proportion of patients had to be sent home with extremely severe burdens (<2nd percentile in the normal population) at discharge - in spite of good improvements during their stay. Data and methods: Since 2009, patients in the RehaKlinikum Bad Säckingen, an in-patient rehab center for orthopedic-rheumatic diseases, answer the questionnaire "Indicators of Rehabilitation Status" (IRES) at the beginning and the end of their stay. We analysed IRES-data of 1 803 patients with FMS (94% women). In addition to analyses of change, we determined the degrees of severity at admission and discharge on the basis of a comparison with the normative sample of the IRES. In order to predict membership of the high-risk group of patients with still "extremely severe" values at discharge, we performed binary logistic regression analyses. Results: At admission, about 90% of the patients showed either "extreme" (65%<2nd percentile) or "severe" (27% 2nd-10th percentile) values on the IRES summary score as well as on the scores for "psychic status", "pain", "symptoms of orthopedic and cardiovascular diseases", and "functioning in everyday life". In sum, then, FMS-patients have come to rehabilitation with multiple burdens of a severe to extreme degree. At discharge, the mean summary score had improved with a "strong" effect size of SRM=1.07. In spite of these good overall improvements, however, 37.4% of the patients went home with "extreme" burdens remaining, even though almost 60% of them had experienced "strong" (28%) or "relevant" (31%) improvements. The most important predictor of affiliation to this "high-risk group" was - as expected - the IRES summary score at admission. But unexpectedly influential were also some characteristics of social status such as lower household income and lower degrees of education. Conclusion: In rehabilitation research, analyses of change between pre- and post-measurement values should be accompanied by assessments of severity of rehabilitation status at discharge because even good improvements do not necessarily mean that a patient has been rehabilitated successfully.

[Evaluation of the treatment approach AOK-proReha by comparison with a historical control group: an application of the propensity score matching method]. / Die Evaluation des Behandlungskonzepts AOK-proReha durch einen Vergleich mit einer historischen Kontroll-gruppe: Eine Anwendung der Propensity-Score-Matching-Methode.

BACKGROUND: The AOK-proReha treatment approach determines the therapeutic measures during rehabilitation that should be taken in patients who have undergone total hip and total knee replacement surgery. The aim of our study is to scientifically assess the success of AOK-proReha in the routine care. METHODOLOGY: N=619 patients were surveyed about their health status at 3 time points. A historical control group was formed by referring to data of the QS-Reha(®) program and applying the propensity score matching method. RESULTS: We observed clear effects immediately after rehabilitation that revealed their maximum strength rising in most dimensions at the follow-up time point. Comparison with the control group demonstrated similar results in many dimensions. Some results were significantly better while none were significantly worse. CONCLUSION: The results of the AOK proReha approach are promising. Under appropriate conditions, the propensity score matching method is a sensible alternative to conducting a randomized controlled trial.

["Active in rehab": development and formative evaluation of a patient education program to increase health literacy of patients with chronic illness]. / "Aktiv in der Reha": Entwicklung und formative Evaluation einer Patientenschulung zur Förderung der Gesundheitskompetenz von chronisch Kranken.

OBJECTIVE: The aim of the article is to describe the development, the process of manualisation and results from the formative evaluation of a patient-oriented patient education program to increase health literacy of patients with chronic illness ("Active in rehab"). METHODS: Themes of the patient education program were extracted from 17 focus groups. An expert meeting was conducted to validate the content of the patient education program. The formative evaluation was based on a questionnaire (N(max) = 295 patients and N(max) = 39 trainers). RESULTS: The patient education program includes 4 modules with 3 themes (bio-psycho-social model, rehabilitation goals, communication competencies). The evaluation of the modules was good to very good. An analysis of free texts and a follow-up survey among trainers helped us to infer important improvements to the patient education program. CONCLUSION: RESULTS from the formative evaluation show that the patient education program meets patients and trainers needs and is accepted.

[Patient-centredness in rehabilitation : an overview on the current state of research]. / Patientenorientierung in der Rehabilitation : Übersicht über den aktuellen Forschungsstand.

This article provides an overall perspective of the concept of patient-centredness in health care. After discussing the social factors that significantly contribute to this topic, the authors refer to a definition by Mead and Bower in their understanding of patient-centredness. They distinguished five facets of patient-centredness, namely the biopsychosocial perspective, seeing the patient as an individual person, sharing power and responsibility (e.g. shared decision-making), consideration of the patient-treatment provider relationship and regarding the treatment provider as a person. The authors discuss why approaches employing patient-centred care seem particularly well-suited to a rehabilitation context and emphasize the value and benefit of patient-centred care. They describe those areas currently engaging the greatest research efforts in Germany by providing an overview of projects now being conducted in the funding priority for chronic illnesses and patient orientation. In the final chapter the authors consider the need for further research as well as the potential adverse side effects associated with intensified patient-centred care.

[The state of quality management implementation in ambulatory care nursing and inpatient nursing]. / Der aktuelle Stand des Qualitätsmanagements in ambulanten und stationären Pflegeeinrichtungen.

AIMS: The demands being made on quality assurance and quality management in ambulatory care nursing and inpatient nursing facilities continue to grow. As opposed to health-care facilities such as hospitals and rehabilitation centres, we know of no other empirical studies addressing the current state of affairs in quality management in nursing institutions. The aim of this investigation was, by means of a questionnaire, to analyse the current (as of spring 2011) dissemination of quality management and certification in nursing facilities using a random sample as representative as possible of in- and outpatient institutions. METHOD: To obtain our sample we compiled 800 inpatient and 800 outpatient facilities as a stratified random sample. Federal state, holder and, for inpatient facilities, the number of beds were used as stratification variables. 24% of the questionnaires were returned, giving us information on 188 outpatient and 220 inpatient institutions. While the distribution in the sample of outpatient institutions is equivalent to the population distribution, we observed discrepancies in the inpatient facilities sample. As they do not seem to be related to any demonstrable bias, we assume that our data are sufficiently representative. RESULTS: 4 of 5 of the responding facilities claim to employ their own quality management system, however the degree to which the quality management mechanisms are actually in use is an estimated 75%. Almost 90% of all the facilities have a quality management representative who often possesses specific additional qualifications. Many relevant quality management instruments (i. e., nursing standards of care, questionnaires, quality circles) are used in 75% of the responding institutions. Various factors in our data give the impression that quality management and certification efforts have made more progress in the inpatient facilities. Although 80% of the outpatient institutions claim to have a quality management system, only 32.1% of them admit to having already been (or be in current preparation to be) certified, a figure that was 41.5% among the inpatient facilities. These percentages are smaller when one relies on information provided by the certifying institutions themselves rather on the nursing facilities. Most frequent is the certification according to the DIN EN ISO 9001 standard, since the care-specific certification procedures most widespread on the market enable facilities to combine a care-specific certificate with one according to DIN norms. CONCLUSION: Quality management has become very widespread in nursing facilities: every third institution claims to have been certified, and the trend to become certified has clearly intensified over the last few years. We observe overall very great acceptance of both internal quality management and external quality assurance. We suspect that the current use of quality management instruments in many nursing facilities will not fall behind such efforts in hospitals and rehabilitation centres.

[Comprehensibility of patient education in orthopaedic rehabilitation: a qualitative study on patients and providers]. / Verständlichkeit von Patientenschulungen in der orthopädischen Rehabilitation: Qualitative Erhebung bei Rehabilitanden und Schulungsleitern.

STUDY OBJECTIVE: An important requirement for achieving postulated goals in the context of patient education is that patient education be conducted in a way that the patients can understand it. It is the objective of this explorative study to examine how patients and providers evaluate the comprehensibility and patients' comprehension of patient education under routine conditions during orthopaedic rehabilitation. Furthermore, we aim to explore the influencing factors that patients and providers describe as conducive and counterproductive to the comprehensibility of patient education, and the ideas or desires they have as to how patient education can be made more comprehensible. METHODS: We conducted guided focus groups with 50 patients with chronic back pain or osteoarthritis aged between 22 and 71 years (M=50.4, SD=9.4) and 35 patient education providers aged between 26 and 61 years (M=44.9, SD=9.8) in a total of 9 orthopaedic rehabilitation centres. Qualitative analyses of the interview transcripts were conducted according to Mayring's content analytic approach using Atlas.ti software. RESULTS: Patients and providers evaluate patient education as generally comprehensible. The involvement of patients in patient education is reported by both patients and providers as the main conducive factor. Patients describe poor (e. g. superficial or contradictory) information as counterproductive regarding comprehensibility, while providers tend to mention patients' lack of motivation and of taking personal responsibility as hindering patients' comprehension. Patients' and providers' proposals and ideas can be organized in the topics patient education (e. g. stronger reference to patients' everyday life), providers (e. g. improving providers' tutoring skills), information (e. g. more information), patient involvement (e. g. stronger consideration of patients' interests), organization (e. g. smaller groups), and goal clarification (e. g. consideration of patients' expectations). CONCLUSION: Our results reveal that good comprehensibility can be achieved in patient education during routine orthopaedic rehabilitation. They also show the factors that account for good comprehensibility. The counterproductive factors described by patients and providers provide evidence of the factors that may hold potential for improving patient education with regard to comprehensibility.

[Empirically derived recommendations for measuring patient-reported change in rehabilitation studies]. / Empirisch gestützte Empfehlungen für die patientenberichtete Veränderungsmessung in der medizinischen Rehabilitation.

Diverse methods are available for evaluation of (medical) interventions. In each case one has to decide on a specific method. Our aim was to analyze typical problems involved in the measurement of change. Different methods are delineated, and their specific pros and cons are set out. Subsequently, empirically derived recommendations are outlined on which method should be employed for which problem and under which circumstances. A characteristic of rehab treatment is that as a rule a multitude of problems are addressed, and accordingly, treatment goals are heterogenic. Straightforward recommendations for one or the other method cannot be given.

[Outcome quality in rehabilitation of children and adolescents: results of project aiming at the development of a quality assurance programme]. / Ergebnisqualität in der Kinder-Jugend-Rehabilitation: Resultate eines Projekts zur Entwicklung eines Qualitätssicherungsverfahrens.

OBJECTIVES: This study reports on the results of a project that was initiated by the German pension fund and the statutory health insurers and conducted in 2009 to 2010 with the goal of developing, arranging and testing instruments for quality assurance for the outcome (including patient satisfaction) in inpatient medical rehabilitation centres for children and adolescents. METHOD: After a 6-month concept phase in which instruments were developed using value benefit analyses, expert consensus procedures, surveys of centres, and qualitative (cognitive interviews) and quantitative (psychometric tests) pre-studies, data were collected in 23 child and adolescent rehabilitation centres using the instruments that had been developed. The project was limited to the following 4 main diagnoses: obesity, bronchial asthma, atopic eczema, and hyperkinetic disorders as well as related disorders (ICD: F90-F94). Children and adolescents over the age of 12 years were interviewed themselves, for younger children, the parents were interviewed. It was decided to include 7 constructs that can be considered as indicators of the quality of the outcome or of patient satisfaction: generic and disease-specific quality of life, perceived change in health, body function parameters (e. g., blood pressure), disease-related self-management, satisfaction of the children/adolescents with rehabilitation, and parent satisfaction. RESULTS: With respect to quality of life, blood pressure, Munich fitness test and lung function parameters, low to medium effects were achieved; with respect to body mass index, SCORAD score and disease-related self-management, the effects were strong. The results can be summarised to the effect that rehabilitation generally achieves noticeable effects in the areas where the impairment is pronounced. In both the parent and the rehabilitation patient survey, there was a high level of satisfaction. The parents of rehab patients under the age of 12 years gave the centres an average assessment of 1.6 to 1.8; rehab patients over the age of 12 years gave the centres an average grade of 2.0 (1=very good to 5=very bad). The differences among the centres were very low after risk adjustment, especially for outcome quality. CONCLUSIONS: The strengths of the instruments that were developed are that a scientifically demanding quality measurement was conducted (e. g., combination of indirect and direct measurement of change, several methodological approaches to measuring results, wide range of endpoints analysed, homogeneous comparison groups, elaborate risk adjustment process). There are limitations, especially with respect to the rather great effort needed and not particularly high power for the comparison of centres. The German pension fund and the statutory health insurers are now discussing on the basis of the results of the project the routine implementation of quality assurance in children/adolescent rehabilitation and concrete steps that can be taken to implement it in routine health care.

[Restrictions in participation in women with fibromyalgia syndrome. An explorative pilot study]. / Beeinträchtigungen der Teilhabe bei Patientinnen mit Fibromyalgiesyndrom. Eine explorative Pilotstudie.

BACKGROUND: Patients with fibromyalgia syndrome are often severely restricted in their ability to participate in everyday activities and in social interaction. The aim of this study was to document female patients' subjectively-perceived limitations in participation and to develop material to generate items for a specific participation questionnaire. MATERIAL AND METHODS: We collected data from 8 groups of women with fibromyalgia syndrome (n=38), and developed a hierarchical system of categories using the patients' statements (ATLAS.ti; Qualitative Data Analysis). RESULTS: Our final group of categories contains 10 superordinate categories. Women with fibromyalgia syndrome often describe restrictions in their relationships with other people, and the impaired ability to engage in social and leisure activities. They speak of difficulties at the workplace, while doing housework, and complain about a lack of understanding and awareness on the part of the general public. CONCLUSION: Fibromyalgia syndrome patients admit to be extremely impaired in a variety of social roles. Their statements have enabled us to develop a questionnaire that reflects the range of factors restricting participation from the patient's perspective.

[Communication preferences of patients with chronic back pain in medical rehabilitation]. / Kommunikationspräferenzen chronischer Rückenschmerzpatienten in der medizinischen Rehabilitation.

BACKGROUND: Successful treatment of chronic pain patients can be dependent on successful patient-provider communication. Patient-physician communication for patients with chronic back pain (CBP) has rarely been explored. The current study examines two questions: what is important for CBP patients concerning communication with the healthcare provider and are there interindividual differences in communication preferences dependent on sociodemographic characteristics? METHODS: Patient preferences were measured using the KOPRA questionnaire (32 items and 4 scales). The mean age of the 701 participating rehabilitants was 51 years (SD ±11.1 years) of which 60% were women. RESULTS: An effective and open communication with the healthcare physician was rated as the most important preference for CBP patients. Gender (depending on the scale: p = 0.01-0.82) and age (p = 0.01-0.12) seemed to influence some preferences in patient-provider communication. CONCLUSION: By taking into account individual communication preferences of CBP patients, healthcare providers could purposefully be responsive to these, possibly contributing to a more successful treatment.

[Conceptual and methodological challenges in participation research]. / Konzeptionelle und methodische Herausforderungen der Teilhabeforschung.

In this contribution we discuss the conceptual and methodological challenges with which participation research must deal to achieve long-term success. It is not the aim of this paper to identify solutions to those problems, but rather to facilitate their discussion by enhancing the awareness of the complexity of implementing high-quality participation research.1. It is important that studies on participation research specify which aspects of the concept "participation" are being addressed, in other words, how the term is being interpreted. This would improve interdisciplinary communication beyond one's immediate research field while increasing cumulative knowledge.2. Fully-developed participation research is generally only conceivable when carried out in an interdisciplinary manner. Its current status can be considered a transition between pre-interdisciplinary and multidisciplinary efforts requiring further development. The key factor to the success of any interdisciplinary activity is each researcher's attitude, that is, interdisciplinary projects must be "carried" by the readiness of the entire team to share as well as question their individual knowledge and expertise and to show a willingness to learn from others. The research's prevailing conditions can make this easier when the functioning, communicative relationships among participation researchers are set up to construct and incorporate an acknowledged repertoire of methodology and knowledge and when participation researchers design specific promotion and career structures.3. Another main element of such shared knowledge would be methods and theories addressing the integrated consideration of personal and environmental characteristics. Social-ecological models, especially those used in the preventive sciences and public health field, would provide a good basis for integrating theories. These models aim to define personal factors in conjunction with aspects of the social and attitudinal environment of an individual to gain deeper understanding of his or her life's reality. The development of these approaches and their implementation in participation research is a key future goal, as these models represent the theoretical basis of interdisciplinary cooperation among those disciplines active in participation research, making them essential to its long-term success.

["Teilhabe" (social participation) of patients in health care research: relations to similar concepts and overview of assessment instruments]. / Teilhabe von Patienten an Lebensbereichen als Gegenstand der Versorgungsforschung: Beziehung zu verwandten Konstrukten und Übersicht über vorhandene Messverfahren.

The great significance of the concept of participation in health care policy is in contrast with the comparatively low resonance that the participation construct ("Teilhabe" in German) has found in scientific circles. It can be argued that this is due in part to the insufficient specification of the term in the ICF ("International Classification of Functioning, Disability and Health") and the lack of suitable measuring instruments. This article deals with the question of what approaches to defining participation currently exist and what methods are conceivable for facilitating the integration of the construct in health services research. Based on a review of German and international literature on participation, the construct is differentiated from related concepts such as "social capital," "social network," "social support," and "community integration". It is recommended that participation should be understood as "social role participation". The possibility this entails of referring to existing research traditions and available studies leads to the necessity that a comprehensive measurement of participation should include five dimensions of this construct: performance, capability, importance, context factors, and satisfaction. A review of the available instruments for measuring participation shows that most of them cover the ICF domains that are important in this context to a sufficient extent. However, there are the following areas for improvement: a) No measuring instrument includes all five relevant dimensions of participation, b) None of the instruments take non-health-related obstacles to participation (context factors) into consideration, c) The possibility of a version with parallel content for proxy assessment is rarely used, d) The published methods available to German-speaking users cover participation only globally or are older and do not incorporate experience with the ICF. In view of the significance of the participation construct in the German health care system, studies on new or ongoing developments of assessment instruments that meet these challenges would be welcomed.

[Health valuations for patients with chronic ischemic heart disease]. / Gesundheitsbewertungen bei Patienten mit chronisch-ischämischer Herzkrankheit.

OBJECTIVE OF THE STUDY: The study deals with the question of how patients with chronic ischemic heart disease assess different health situations that can be achieved by rehabilitation. Furthermore it examines which factors influence these health valuations and whether the predictors vary depending on the level of education. METHODS: The health valuations of n = 331 patients with chronic ischemic heart disease are compiled using visual analogue scales (VAS). In addition to sociodemographic questions, generic and illness-specific scales (SF-12, MacNew) for the health-related quality of life (HRQOL) are used as potential predictors of the health valuations. Additional basic medical data were provided by the physician. Hierarchical regression analyses are conducted; the sociodemographic, medical and HRQOL variables are included stepwise. Since many variables are observed for the regression models, an imputation of missing values is made. RESULTS: The health dimensions "Self-care and domestic life" and "Mobility" are assigned the highest values on the VAS. The lowest preference is assigned to the dimensions "Reduction of symptoms" and "Information about the disease". The differences between the health dimensions are statistically significant. Sociodemographic variables explain up to 3.6% of the variance of health valuations, with level of education and living with a partner being the most important predictors. The medical variables included in the second step explain between 2.1 and 6.8% incremental variance; the most important predictor is the operation performed prior to rehabilitation (bypass, heart valve). The HRQOL variables in the third block provide 7.1-24.9% incremental explanation of variance, by far the highest percentage. This is mainly achieved using the 3 MacNew scales (emotional, social and physical functioning). The overall explanation of variance for the health valuations is 17.1-28.8%. For patients with a higher level of education, the total explanation of variance is about 9.2% higher on average than for the total sample and lies between 21.2 and 44.1%. DISCUSSION: The health dimensions examined are assessed quite differently by the patients. The most significant factor of influence is the HRQOL. In the subgroup of patients with a higher level of education, the predictive strength of the variables examined is considerably higher in comparison with the total sample. Since the health valuations can be predicted to a limited extent only using other data arising during routine care, it is necessary to implement special methods for compiling health valuations.

[The development of an instrument assessing the relevance of rehabilitation outcomes for patient participation: retest reliability and descriptive results]. / Die Entwicklung eines Instruments zur Erfassung der Teilhabe-Relevanz von Rehabilitationseffekten: Retest-Reliabilität und deskriptive Ergebnisse.

OBJECTIVE: In the context of an increasing patient orientation in health care, surveying patients on the success of treatment has become highly relevant. The objective of the study was to develop and test an instrument for surveying the patients' perceptions of the participation relevance of changes in health status after inpatient medical rehabilitation with respect to various areas of life for 3 diagnoses: breast cancer, chronic ischemic heart disease, and chronic back pain. METHODS: The instrument refers to certain disease-specific areas of health (e. g., mobility) with regard to which the patients are asked whether they perceived an improvement and if so, what improvement in participation had ensued as a result. A questionnaire study (measuring time points: end of rehab and 6 months after the end of rehab) was conducted in 3 samples (breast cancer: n=297, chronic ischemic heart disease: n=295, chronic back pain: n=186) to test the methodology. The share of missing values and undesirable ceiling/floor effects were assessed to analyze the distribution characteristics. In a partial sub-sample, a third measuring time point was introduced approx. 10 days after the second measuring time point, and the retest reliability of the assessment of participation relevance is determined using the ICC. We also present descriptive results relative to the participation relevance from the patient perspective. RESULTS: The instrument shows good distribution characteristics for the items. Regarding retest reliability, there were satisfactory values for all diagnoses in all areas of health. The descriptive analyses showed that patients who perceived a noticeable improvement in their health status at the end of rehabilitation or 6 months after inpatient rehab generally assessed the participation relevance of this improvement in health to be "moderate" to "strong". DISCUSSION: The concept of assessing the participation relevance from the patient perspective is a satisfactorily reliable construct. By including the subjective significance of treatment success it takes into account the concept of clinical significance from the patient's perspective, a concept which has thus far been considered only insufficiently. Results show that patients ascribe the health improvements achieved by rehabilitation a noticeable relevance for their participation.

[Disease-related self-management of obese children and children with bronchial asthma: changes and predictors during inpatient rehabilitation]. / Das Krankheitsmanagement von Kindern und Jugendlichen mit Adipositas und Asthma bronchiale: Veränderungen und Prädiktoren im Rahmen stationärer Rehabilitation.

BACKGROUND AND SIGNIFICANCE: There is growing interest in disease-related self-management as a means of coping with chronic disease. Improving disease-related self-management has thus become a key aim of inpatient medical rehabilitation of children and adolescents. We conducted this study in the framework of the project entitled "Outcome quality in medical inpatient rehabilitation of children and adolescents" initiated and financed by the German statutory pension and statutory health insurance programmes. STUDY AIM: Our study aim was to examine any changes following inpatient medical rehabilitation in the diagnosis-specific disease self-management of children suffering from obesity and from bronchial asthma. In addition we sought to identify any personal characteristics of the rehabilitants that might predict changes in self-management. METHODS: We collected data from 17 inpatient medical rehabilitation centres on disease-related self-management in children with obesity (n=706) and bronchial asthma (n=162) at the start of rehabilitation and 6 weeks after rehabilitation. The age of the diagnostic group "obesity" averaged 14.3 years, with a male percentage of 39.3%. The average age in the diagnostic group "bronchial asthma" was 14.0 years, with a male percentage of 54.2%. A questionnaire was used addressing the self-management of chronically ill young people. To compare the results from both measurement occasions, we employed t-tests for dependent samples and calculated effect-sizes. Using hierarchical regression analyses, we determined predictors of change in disease-related self-management. The predictor variables were included into the hierarchical regression analyses within 6 topical blocks (baseline disease management, sociodemography, body functions, baseline quality of life, motivation for rehabilitation, and duration of rehabilitation). RESULTS: We observed significant post-rehabilitation improvement of disease-related self-management in both the obese (T=-22.423; p<0.001) and the bronchial asthma group (T=-5.349; p<0.001). This improvement revealed a strong effect in the obese group (SRM=0.84) and a moderate effect in the bronchial asthma group (SRM=0.42). Regression analyses explained 3.4% of the variance in the obese group and 31.3% in the bronchial asthma group. In the latter group, self-management 6 weeks after the end of rehabilitation can be predicted by good self-management at the start of rehabilitation (ß=0.516; p<0.001) as well as primary school attendance (ß=0.201; p<0.01). DISCUSSION: Our results show that the disease-related self-management of obese youngsters and those with bronchial asthma benefits from inpatient rehabilitation. Changes in self-management are only poorly predicted by the variables included in the regression analysis in the diagnostic group "obesity". Other factors than those considered in this study seem to influence the success of treatment. In the diagnostic group "bronchial asthma" a significantly higher proportion of incremental variance can be explained, the extent of disease management at the beginning of rehabilitation being the most important predictor.

[Quality assurance and quality management in medical rehabilitation]. / Qualitätssicherung und Qualitätsmanagement in der medizinischen Rehabilitation.

External quality assurance in medical rehabilitation is characterized by the programs of Germany's two largest providers of rehabilitation (the German pension insurance and the statutory health insurance). The programs were developed with considerable input from scientific institutes. Their strengths lie in measuring several relevant dimensions of quality, the comprehensive implementation for nearly all illnesses treated, integration of the patient perspective, and realization of prospective study designs with follow-up. Weaknesses include low relevance for patient allocation and compensation, the absence of systematic evaluations, and a lack of published patient information on the results of the quality measurements. Internal quality management in medical rehabilitation is regulated by sweeping legal guidelines. Since 2009, a statutory agreement has been in effect which includes a provision that all inpatient rehabilitation centers must be certified by October 2012. Areas for potential improvements in internal quality management processes include an improved theoretical basis, higher specificity for rehabilitation, and a more transparent, methodically improved structure of certification procedures.

[Guidelines and guideline research. Overview and state of guideline implementation in medical rehabilitation]. / Leitlinien und Leitlinienforschung. Übersicht und Stand der Leitlinienimplementierung in der medizinischen Rehabilitation.

"Guideline research" is understood here to be the area of healthcare research that deals with the methodology and evaluation of processes for developing, implementing, assessing, and evaluating guidelines. For example, guideline research deals with the selection of adequate implementation strategies and the proof of the effectiveness and efficiency of the implementation of guidelines. The current data situation does not allow any reliable statements to be made about whether and to what extent the health-related outcome for patients is actually improved by implementing guidelines. For medical rehabilitation, there are a number of guidelines which appear to be just as good with respect to quality as the guidelines for acute medicine. However, there is a need for improvement in the quality criteria for methods. Rehab-related guidelines and therapy standards can be found in the AWMF guidelines, in the program for national healthcare guidelines, and in the rehabilitation quality assurance of the German Pension Fund. Guideline research in rehabilitation should concentrate on topics that arise from the specific situation of this area of healthcare, e.g., development of interdisciplinary guidelines, applicability of guidelines for multiple diseases, or possibility of evidence-based guidelines for complex interventions.