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.

[Promotion of physical activity for older patients with rheumatism : Characteristics of inflammatory rheumatic diseases against the background of physical activity recommendations]. / Bewegungsförderung für ältere Rheumapatienten : Besonderheiten bei entzündlich rheumatischen Erkrankungen vor dem Hintergrund aktueller Bewegungsempfehlungen.

Due to the wide range of positive effects and the clear evidence of effectiveness, physical activity is one of the most important treatments for inflammatory rheumatic diseases. Because of the frequent overlap of disease and age-related aspects in older patients, the implementation of the German national physical activity recommendations has to be checked and accompanied by physicians. To get the older patients in motion, a patient-centered approach is required that takes the individual health problem(s) and the current context of life into account. This article provides an overview of the activity-related characteristics of older patients with inflammatory rheumatic diseases. Against this background a simple strategy is provided for promoting physical activity during medical consultation, which takes the characteristics of older patients with rheumatism into consideration. In this way, physicians can integrate a targeted, resource and time-saving economic strategy into consultations that is in concordance with the national physical activity recommendations.

[Instruments for Measuring the Effects of Early Intervention on Maintaining and Restoring Ability to Work in Germany: Opinion of an Interdisciplinary Working Group]. / Instrumente zur Messung von Effekten einer Frühintervention auf den Erhalt bzw. die Wiederherstellung der Arbeitsfähigkeit in Deutschland ­ Stellungnahme einer interdisziplinären Arbeitsgruppe.

OBJECTIVE: In projects on early intervention, a wide variety of instruments is used for the measurement of intervention effects on preservation or restoration of ability to work. The aim of the present work was to propose an appropriate instrument or a range of appropriate instruments that enable diverse interventional approaches to be compared, and data quality to be improved. METHODS: A systematic literature search was conducted to map the currently existing measuring instruments. In addition, based on structured interviews with leaders of existing early intervention projects or representatives of other interventional approaches, knowledge and application of the measuring instruments in Germany were determined. In the context of a working meeting, a recommendation was formulated based on the results of the literature search and interviews. RESULTS AND COMMENTS: There is currently no instrument that could be recommended without reservation for the stated purpose. Based on the results of the literature search and the interviews, the working group recommends using, as a first step, the Work Ability Index (WAI, focus on work ability) and the Work Productivity and Activity Impairment Questionnaire (WPAI, focus on absenteeism and presenteeism). German-language versions of both questionnaires are freely available and offer a good compromise in terms of psychometric quality criteria, as well as of practicality and applicability. The measuring instruments should be developed further, with the goal of establishing an optimized instrument that combines the strengths of the two instruments. CONCLUSION: In Germany, use of WAI and the WPAI in as many early intervention approaches as possible will help improve the database, allowing better comparability. However, the focus of further research must be to develop an optimized instrument from elements of WAI and WPAI, in order to be able to measure ability to work as well as the effects of an intervention on preservation or restoration of the ability to work, regardless of the setting.

Health-related quality of life in rehabilitants with different cancer entities.

The focus of the study is the analysis of changes in health-related quality of life in various cancer entities during and after an inpatient rehabilitation programme. In a multicentre longitudinal study, a total of 211 cancer patients (breast cancer: N = 84; prostate cancer: N = 90; colon cancer: N = 37) were asked about their quality of life (EORTC QLQ-C30; HADS) at the beginning, the end and 3 months after the end of the rehabilitation programme. In different domains of quality of life significant and mostly clinically relevant improvements were found during rehabilitation. The breast and prostate cancer patients improved most in emotional functioning, colon cancer patients in global quality of life. With regard to the severity of symptoms, the fatigue burden improved in breast and colon cancer patients, nausea in the prostate cancer patients. However, they are increases 3 months after rehabilitation. Functional burdens improved 3 months after the end of rehabilitation in the physical domain for all cancer patients. For breast cancer patients, emotional functioning decreased significantly 3 months after rehabilitation. An inpatient oncological rehabilitation programme can lead to an improvement in quality of life.

[Memorandum of the German Society for Rheumatology on the quality of treatment in rheumatology - Update 2016]. / Memorandum der Deutschen Gesellschaft für Rheumatologie zur Versorgungsqualität in der Rheumatologie ­ Update 2016.

On behalf of the Steering Committee of the German Society for Rheumatology, in 2016 the Interdisciplinary Commission on Healthcare Quality updated the 2008 memorandum on rheumatological healthcare in Germany. The update considers changes in therapeutic strategies, treatment targets as well as current structures in healthcare and the political framework. It concentrates on examination of the need for rheumatologists with a background in internal medicine and determines the gap between needs and supply. The internist rheumatologist is responsible for the care of patients with inflammatory rheumatic diseases and contributes to the care of patients with severe forms of other musculoskeletal diseases. At least 2 internist rheumatologists are needed for the outpatient care of 100,000 adult inhabitants, equivalent to 1350 rheumatologists in Germany. With currently 776 rheumatologists, we have little more than half of what we need. The German Society for Rheumatology calls for specific requirements planning for rheumatologists in outpatient care in order to decrease the deficit. In acute inpatient care we need specialized hospitals and wards that ensure a high quality of treatment for patients with complex diseases. We need up to 50 beds per 1 million inhabitants. At least 2 full-time internist rheumatologists and 3 further physicians are needed per 30 beds. In inpatient and outpatient rehabilitation we need 40 beds or outpatient places per 1 million inhabitants with at least 1 full-time rheumatologist and 1 further physician. In order to reduce the existing deficits and to cover the increasing future need for rheumatologists, more emphasis has to be laid on primary and secondary education. Chairs for internal rheumatology are needed at each medical university and more positions for postgraduate training in rheumatology should be provided. In all segments of healthcare the treatment aims should be jointly defined between patients and physicians. The patients should be treated in an interdisciplinary network, comprising other medical specialties, health professionals as well as patient organizations.

[Current Developments of the Interdisciplinary Subject Rehabilitation, Physical Medicine, Naturopathic Treatment in the German Medical Faculties: Results of the DGRW Faculty Survey in 2015]. / Aktuelle Entwicklungen der rehabilitationsbezogenen Lehre in den humanmedizinischen Studiengängen in Deutschland: Ergebnisse der DGRW-Fakultätenbefragung 2015.

To ascertain the current development of the rehabilitation-related medical teaching in the interdisciplinary subject Rehabilitation, Physical Medicine, Naturopathic Treatment (Q12) regarding its execution, content, exams and evaluation of teaching at the Medical Faculties the German Society of Rehabilitation Science conducted another faculty survey in 2015. Representatives of all degree courses of human medicine in German Universities (n=41) received a pseudonymised standardised questionnaire in summer 2015. The response rate was 76% (n=31). Half of the faculties (48%) stated that they had a teaching and research unit for at least 1 of the 3 subjects of the interdisciplinary Q12. The Q12-teaching of faculties including these units partially differed from the other faculties. Model medical education programmes provide on average 2 semesters more for Q12-teaching in comparison to the traditional programmes. More than 3 quarters of the traditional programmes and all other courses include other medical professionals besides physicians as lecturers. Multiple choice questions still constitute the most common examination type (94%). Nearly all Medical Faculties evaluate the rehabilitation-related teaching but only half of all them have implemented a financial gratification based on the evaluation results. Even 10 years after the implementation of Q12, major variations were demonstrated regarding the execution, content and methods of medical education in rehabilitation. In the future the influence of the National Competence Based Catalogues of Learning Objectives for Undergraduate Medical Education on the Q12-development and the Q12-teaching in medical university education in Germany with foreign qualification will be of particular interest.

[Assessing Social Resources in the Chronically Ill: Development and Initial Psychometric Testing of an Ego-centered Network Generator]. / Erfassung sozialer Ressourcen bei chronisch Kranken: Entwicklung und erste psychometrische Überprüfung eines egozentrierten Netzwerkgenerators.

Background: The social network is one of the most significant resources during the course of the rehabilitation. However, there is a lack of short instruments in questionnaire format for the assessment of social relations in the chronically ill. We therefore developed a network generator (NWG), and tested its performance in patients with different diseases during medical rehabilitation. Methods: We tested its reliability, validity and acceptance in 882 inpatients participating in medical rehabilitation programs (cancer N=290, musculoskeletal diseases N=292, and psychosomatic diseases N=300). Findings: The NWG provides clear information about different aspects of the social network of these subgroups with satisfying psychometric characteristics. Conclusions: The NWG can be applied as short assessment of positive social relationships that, in practice, are important resources during the whole rehabilitation process of the chronically ill.

[Development of a Set of Rehabilitation Related Multiple-choice-questions in Medical Education]. / Entwicklung eines Prüfungsfragenpools für die rehabilitationsbezogene Lehre im Studiengang Humanmedizin.

In the rehabilitation related teaching as in other subjects of the medical training multiple choice (MC) examinations are the most frequent type of examinations. Compared to other subjects only a few MC questions are available for the interdisciplinary subject Rehabilitation. Therefore an internet-based online platform "Pool of rehabilitation related MC questions" was developed to assist teachers regarding the provision, design and organization of high-quality rehabilitation related MC questions. A total of 502 existing MC questions were collected from 12 German Medical Faculties. After removal of 59 questions not suitable for formal and content reasons a total of 443 questions were presented to 6 reviewers for triple reviews (a total of 1 329 expert reviews received). Of the 502 questions 335 (67%) were included in the final pool including short cases with 46 case studies. The questions refer to the following learning objectives: principles of rehabilitation (40%), rehabilitative interventions (20%), diagnosis and assessment (18%), initiation and control of the rehabilitation process (12%) and methods/quality of rehabilitative interventions (10%). The use of the online platform modules resp. the questions are for free for lecturers. This includes the compilation and output of complete examinations, the statistical evaluation, and other audit-related materials. This examination pool counteracts the current lack of quality-assured rehabilitation-related MC questions and contributes to set common standards for the Medical Faculties to rehabilitation related examinations.

[Treat to participation : Position paper of the German Society for Rheumatology on sustained improvement of functional health of patients with rheumatic and musculoskeletal diseases]. / Treat to Participation : DGRh-Positionspapier zur nachhaltigen Verbesserung des funktionalen Gesundheitszustandes von Rheumakranken.

From the perspective of patients with rheumatic diseases, the reduction of inflammatory disease activity alone is not a sufficient treatment goal. In addition the functional health and participation also have to be improved. Starting with the first symptoms the empowerment for the self-management of the disease is important for the patients; therefore, the established treat to target-strategy has to be expanded by the functional dimension to treat to participation. The position paper of the German Society for Rheumatology (GSR) summarizes the relevant fields of the multiprofessional action that is frequently necessary. This includes the acquirement of function-related competencies during training, further education and advanced training as well as implementation in the everyday practice of patient care. Furthermore, the GSR acknowledges the need for research related to functional and sociomedical consequences of rheumatic diseases and to individual and combined function-related programs in outpatient and inpatient care in rheumatology.

[Trends of work force participation of patients with rheumatic diseases : results from German social insurance data and the national database of the German collaborative arthritis centers]. / Trends der Erwerbstätigkeit von Rheumakranken : Ergebnisse aus Sozialversicherungsdaten und Kerndokumentation der Rheumazentren in Deutschland.

Positive therapeutic effects on the work force participation derived from international clinical trials may not be directly transferable to the community based care in Germany. Therefore recent changes of data regarding sick leave (SL), work disability pension (WDP) and employment from the social insurance and from the national database of the German collaborative arthritis centers were analyzed covering a time period of at least 10 years. Health insurance data showed a steeper decline in the average duration of SL caused by rheumatoid arthritis (RA), ankylosing spondylitis (AS) and systemic lupus erythematosus (SLE) compared with all other diseases. In RA patients from the collaborative arthritis centers the mean duration of SL was much more reduced than the average duration of SL for members of the compulsory health insurance. The proportion of gainfully employed RA patients in collaborative arthritis centers has particularly increased in women. According to data from the pension insurance fund less incident cases of WDP due to RA, AS, and SLE have been observed than WDP caused by all other diseases. Thus different nationwide data show positive changes of the work force participation of individuals suffering from inflammatory rheumatic diseases in Germany.

[Trends in rehabilitation of patients with rheumatic diseases in Germany]. / Leistungstrends der rehabilitativen rheumatologischen Versorgung in Deutschland.

Recent Deutsche Gesellschaft für Rheumatologie (DGRh, German Society of Rheumatology) guidelines emphasized the significance of coordinated multidisciplinary care and rehabilitation of patients with inflammatory rheumatic diseases. Nationwide data from the German pension insurance funds showed that inpatient rehabilitation due to rheumatoid arthritis (RA) varied by a factor of 2.6 between the different German states. From 2000 to 2012 rehabilitation measures were reduced by one third, most significantly in men with ankylosing spondylitis (AS). Rehabilitation measures because of RA or AS were provided up to 14 times more frequently by the German statutory pension insurance scheme compared with a large compulsory health insurance which is responsible for rehabilitation measures after retirement. In rehabilitation centers with high numbers of patients with inflammatory rheumatic diseases, higher structural and process quality were demonstrated. In 2011 a total of 40 % of RA patients in the national database of the collaborative arthritis centers showed medium or severe functional limitations. Among these disabled RA patients inpatient rehabilitation was reduced by about 50 % between 1995 and 2011. Out of all RA patients from outpatient rheumatology care with severe functional limitations 38 % had no functional restoration therapy within the previous 12 months with a high variation between rheumatologists. Experiences from other European countries may inspire German rheumatologists and other involved health professionals to initiate a wider range of rehabilitative interventions in the future.

[Intensified rehabilitation aftercare (IRENA): utilization alongside work and changes in work-related parameters]. / Das Intensivierte Rehabilitationsnachsorgeprogramm (IRENA) der Deutschen Rentenversicherung Bund - Berufsbegleitende Inanspruchnahme und Veränderungen berufsbezogener Parameter.

BACKGROUND: An aftercare programme following medical rehabilitation may be beneficial in order to reinforce and stabilize the positive effects of rehabilitation and to encourage individual health-related modifications of behaviour and lifestyle. Medical rehabilitation and the aftercare programme of the German Pension Insurance Fund primarily are intended to sustain earning capacity. As part of an evaluation of the Intensified Rehabilitation Aftercare Programme (IRENA) established by the German Pension Insurance Fund, work-related aspects in orthopaedic patients were analyzed based on various data sources. Firstly, the significance of institutional and individual conditions for utilization of IRENA alongside work was of interest. Secondly, the IRENA participants' judgements of the changes of work-related parameters due to the programme were examined, differentiating specifically by extent of earning capacity impairments as well as by particular work problems. METHODS: The data set used for the analysis is composed of person-related routine data of the German Pension Insurance Fund relative to IRENA records of the year 2007 (n=30 663), interview data from orthopaedic rehabilitation centres providing IRENA (n=225), and questionnaires of IRENA participants (n=750) that were either collected during a broad evaluation of the IRENA programme or provided by the German Pension Insurance Fund. RESULTS: The results show that the compatibility of IRENA and work is facilitated by the institutional conditions. However, differences between inpatient and outpatient settings have to be recognized. The possibilities to participate in IRENA throughout the day frequently are more diverse in an outpatient setting. In contrast to inpatient centres, outpatient rehabilitation centres see clearly better chances for patients to return to work and to participate in IRENA alongside. With respect to the work-related parameters (work ability, periods of sick leave), clear improvements were reported by participants from the start of rehabilitation to the survey time after the end of IRENA. Particular work problems were reported by 33% of the IRENA participants. The work ability at the end of rehabilitation was found to have been the essential factor for improvement of work ability following IRENA. Particular work problems, however, had no influence, these individuals profited from IRENA to an equal extent. CONCLUSIONS: Institutional and individual view show that IRENA is compatible with utilization alongside work. Also, IRENA combined with prior medical rehabilitation will bring about subjective improvements in health and work-related parameters.

[Networking as a subject of research and quality characteristic of rehabilitation]. / Vernetzung als Forschungsgegenstand und Qualitätsmerkmal der Rehabilitation.

Rehabilitation has to meet numerous challenges in the sectorized health service and social security system. Rehabilitation science has analysed these problems at the interfaces between different actors and domains of care in a number of studies. In research projects and quality assurance, the solution-oriented and networking aspects of rehabilitation particularly of persons with chronic illnesses and disabilities are of interest. Therefore, exemplary studies concerning interface analyses leading to solutions and networking activities are discussed in this article. Different problems and fields of action regarding access to rehabilitation are presented: the role of physicians in practice concerning the patients' applications for rehabilitation, post-acute rehabilitation since introduction of the Diagnosis Related Groups in the acute hospital setting, and the involvement of companies and different funding agencies. With regard to networking in rehabilitation, issues dealt with are work-related interventions as well as challenges for the rehabilitation team concerning joint presentation of concepts in the face of an increasing differentiation of competences and a new distribution of roles and tasks. In this context, quality management within the rehabilitation facilities as well as internal and external patient-orientation including shared decision-making are highly significant during the rehabilitation process. The planning of activities to be realized after discharge from the rehabilitation facility is dealt with in greater detail in view of recommendations for and implementation of physical activities and stepwise return-to-work measures. Rehabilitation has an important course-setting function by supporting rehabilitants on their way toward self-management. Networking within, including and by means of rehabilitation requires considerable effort, which needs to be followed along by research and quality assurance. Due to its multifaceted competences and experiences in networking different actors and processes, rehabilitation should make use of every opportunity aiming at participation and inclusion of the rehabilitants.

The economic burden of disease: comparison between rheumatoid arthritis and ankylosing spondylitis.

During the last decade the economic burden of rheumatic diseases has been increasingly recognised. Even though more studies have been published on rheumatoid arthritis (RA) than ankylosing spondylitis (AS) sufficient data is available for comparison of some economic consequences. This overview addresses mainly the societal impact of RA and AS on (1) labour force participation, on (2) the costs of healthcare consumption and reduced productivity and on (3) health in terms of QALY.In order to examine labour force participation comparison with the general population is preferable. These studies demonstrate increased withdrawal from work in both diseases but more frequently in RA. Risk factors for reduced labour force participation in RA and AS are longer disease duration, lower education and unfavourable labour market conditions. The influence of the sex on employment depends on several factors such as the type of disease and the labour force participation of the general population.In RA overall mean direct costs of healthcare consumption and indirect costs of reduced productivity are above that of AS, particularly after long disease duration. Out-of-pocket expenditures costs were higher in females RA patients than in males while this was less clear in AS. The main cost driver in both diseases for all type of costs was reduced physical function.The societal valuation of health (utility) showed similar reductions of quality adjusted life years (QALYs) in RA and AS when compared with the general population.In conclusion, while the societal valuation of the impact of both diseases on health is similar, the decrease in worker participation is more pronounced in RA and direct as well as productivity costs are higher. However, since AS starts at an earlier age, the lifetime economic burden might be higher. There is a strong relation between physical function and each aspect of economic impact.