[Flexible programs and advanced training for rheumatological patient education]. / Flexible Programme und Fortbildungen für die rheumatologische Patientenschulung.

In two research projects, rheumatological patient education programmes were updated. The first step was to develop an expert consented framework for all rheumatological patient education programmes. From this, curricula and working materials for rheumatoid arthritis (RA) and axial spondyloarthritis (AS) were derived and two exemplary patient education manuals developed. A randomized controlled trail was designed for the five-hour RA basic education program. Finally, existing train-the-trainer training courses were adapted for these patient education programmes.

[Evaluation of effectiveness of education in rheumatology : Recommendations according to a patient education model]. / Wirksamkeitsprüfung rheumatologischer Schulungen : Empfehlungen nach einem Wirkmodell der Patientenschulung.

Patient education in rheumatology should be evidence-based. As recommended by the European League Against Rheumatism (EULAR) the outcomes of evaluation studies should be based on the goals of the education program. In Germany the goals of education programs have been described for all relevant rheumatological indications, various education programs have been published and evaluated. Our model of patient education outcomes distinguishes proximal and distal outcomes that should be used in effectiveness studies. Proximal goals include health literacy (e.g. knowledge, skills, attitudes and motivation) and empowerment. These can be directly influenced by the educational elements of a program. Distal outcomes include self-management behavior (e.g. health behavior, adherence, coping and emotion regulation), morbidity, functioning, quality of life and participation. The latter can be influenced by proximal outcomes and moderated by a number of personal and environmental factors. The results of a literature search summarize appropriate measurements for these outcomes. For distal outcomes, valid instruments exist in the German language for some rheumatological indications. To assess proximal goals there are still developmental needs. We recommend choosing proximal and distal outcomes for evaluation according to the model of patient education outcomes and to test the relationships between these outcomes.

[EULAR recommendations for patient education of people with inflammatory arthritis. Translation and evaluation in Germany]. / EULAR-Empfehlungen für die Schulung von Patienten mit entzündlich-rheumatischen Gelenkerkrankungen. Übersetzung und Bewertung für Deutschland.

In 2015 EULAR published recommendations for patient education of people with inflammatory arthritis. The recommendations included two superior principles and eight recommendations based on the level of evidence and expert knowledge. The German translation of the recommendations was evaluated by 15 German experts. Experts graded the strength of the recommendations (SOR) on an 11 point numerical rating scale (from 0 = no agreement to 10 = total agreement). The mean score was 8,8 ± 0,49.

[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.

[Empowerment by patient education in rheumatology]. / Empowerment durch Patientenschulung in der Rheumatologie.

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.

Measurement of stable changes of self-management skills after rehabilitation: a latent state-trait analysis of the Health Education Impact Questionnaire (heiQ™).

PURPOSE: To assess stable effects of self-management programs, measurement instruments should primarily capture the attributes of interest, for example, the self-management skills of the measured persons. However, measurements of psychological constructs are always influenced by both aspects of the situation (states) and aspects of the person (traits). This study tests whether the Health Education Impact Questionnaire (heiQ™), an instrument assessing a wide range of proximal outcomes of self-management programs, is primarily influenced by person factors instead of situational factors. Furthermore, measurement invariance over time, changes in traits and predictors of change for each heiQ™ scale were examined. METHODS: Subjects were N = 580 patients with rheumatism, asthma, orthopedic conditions or inflammatory bowel disease, who filled out the heiQ™ at the beginning, the end of and 3 months after a disease-specific inpatient rehabilitation program in Germany. Structural equation modeling techniques were used to estimate latent trait-change models and test for measurement invariance in each heiQ™ scale. Coefficients of consistency, occasion specificity and reliability were computed. RESULTS: All scales showed scalar invariance over time. Reliability coefficients were high (0.80-0.94), and consistency coefficients (0.49-0.79) were always substantially higher than occasion specificity coefficients (0.14-0.38), indicating that the heiQ™ scales primarily capture person factors. Trait-changes with small to medium effect sizes were shown in five scales and were affected by sex, age and diagnostic group. CONCLUSION: The heiQ™ can be used to assess stable effects in important outcomes of self-management programs over time, e.g., changes in self-management skills or emotional well-being.

Short- and long-term effects of intensive training and motivational programme for continued physical activity in patients with inflammatory rheumatic diseases.

BACKGROUND: Despite the positive health effects of (intensive) exercise in patients with inflammatory rheumatic diseases, they are very often inactive. Motivational exercise interventions in other patient samples have shown good effects in promoting exercise behaviours. AIM: To evaluate the short- and long-term effects of an intensive exercise training programme in rheumatic patients with additional motivation for continued physical activity. DESIGN: Controlled prospective intervention study with repeated measures over 12 months. SETTING: Rheumatologic inpatient rehabilitation in two centres in Germany. POPULATION: Three-hundred-and-seven patients with chronic polyarthritis or spondyloarthritis. METHOD: The patients were assigned to a control group (CG, standard therapy, N.=156) or an intervention group (IG, motivation and intensive training, N.=151). Socio-demographic (age, gender, social background, employment) and health parameters (SF-36, HFAQ, HADS, pain, disease activity), exercise motivation, physical activity and costs of illness were assessed by questionnaires at baseline (t1), discharge (t2), and 12-months-follow-up (t5). Participants evaluated the rehabilitation programme at t2. RESULTS: At t2, IG-patients rated their rehabilitation better than CG-patients and reported higher exercise motivation. All patients had a better health status at t2 compared to t1. At t5, IG-patients reported more physical activity in everyday life. An unexpected lower physical component score (SF-36) of the IG compared to the CG lacked clinical relevance. No other variable showed significant group differences. Both CG- and IG-patients showed improvements in their health-related quality of life, pain, psychological well-being, sports activities, and exercise self-efficacy. CONCLUSION: The rehabilitation programme that included intensive training was perceived to be better than the conventional programme and the patients benefited more from the motivation intervention. Long-term improvements in all participants may be indicators of the positive effects of conventional rheumatic rehabilitation in Germany. Intensive training with motivation also improves physical activity and may have positive socio-economic effects. Future research needs to identify the most effective factors of the intervention and the patient groups that benefit most. CLINICAL REHABILITATION IMPACT: Intensive training with motivation is appropriate for patients with inflammatory rheumatic diseases aged up to at least 60 years and without severe health impairments. It enhances patients' exercise motivation and increases physical activity over at least 1 year.

[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.

[Work-related medical rehabilitation for patients with rheumatic diseases]. / Medizinisch-berufliche Orientierung in der Rehabilitation von Rheumakranken.

In recent years work-related rehabilitation has been intensified. Several studies have shown the effectiveness of work-related interventions in medical rehabilitation by improving participation in the work force and reducing sick leave. The German pension insurance fund has developed standardized requirements for medical work-related rehabilitation which include diagnostic procedures to identify patients with specific occupational problems and vocation-related interventions. These requirements address patients across different indications and diagnoses. Rehabilitation centers are assigned to different levels of work-related interventions depending on the intensity and specificity of the profile. Centers providing the complete range of work-related interventions offer differentiated work-related diagnostics, job training and occupational groups in addition to general social advice. In this article four case studies with different priorities regarding vocational interventions are presented.

[Female patients with fibromyalgia syndrome in somatic and psychosomatic rehabilitation center - an exploratory study on access routes and differences in patient characteristics]. / Fibromyalgiesyndrom-Patientinnen in psychosomatischen und somatischen Rehabilitationseinrichtungen - eine explorative Studie zu Zugangswegen und Unterschieden in Patientenmerkmalen.

STUDY OBJECTIVE: Fibromyalgia syndrome (FMS) is characterized by e. g. chronic, multilocular pain, and mental health problems. In Germany, patients with FMS are treated in somatic and psychosomatic rehabilitation centers - specialized for rheumatic diseases (somatic) or psychosomatic diseases. The aim of this study is to identify the status quo of FMS patients' access routes to the rehabilitation system, and to identify their predictors for being assigned to one or the other indication group. METHOD: Our cohort consists of 197 FMS patients from 3 psychosomatic (M=49.9 years) and 223 FMS patients (M=50.2 years) from 3 somatic rehabilitation centers. At the beginning of rehabilitation, patients filled out a questionnaire packet to identify their access routes to the rehabilitation centers and to record patients' disease-related, psychosocial and socio-demographic characteristics. To analyze the results we used descriptive calculations, calculated bivariate correlations, and conducted binary logistic regression analysis for the prediction of group membership. RESULTS: The access routes of FMS patients to a somatic or a psychosomatic rehabilitation center were often similar. Some items revealed significant group differences, i. e., a higher primary -rejection rate, longer waiting period between application for rehabilitation and its approval, and between the application itself and initiation of psychosomatic rehabilitation in comparison to somatic FMS patients. Prior experience of out-patient psychotherapy, and expectations ("psychological support") for the rehabilitation were predictive patient characteristics for the assignment into a psychosomatic rehabilitation center. Marriage, motivation, and expectations ("physical improvement" and "interaction with other patients") for the rehabilitation were predictive patient characteristics for the assignment in a somatic rehabilitation center. The predictors clarified 32% of the variance of group membership. CONCLUSION: Our results provide initial evidence of how FMS patients access the German rehabilitation system and which of their characteristics are responsible for being assigned to a particular rehabilitation setting.

["Vocational perspective"--short-term efficacy of a group treatment for patients with extensive work-related problems during medical rehabilitation]. / "Berufliche Zukunft"--Kurzzeiteffekte eines Behandlungsprogramms bei sozialmedizinisch relevanter Problemlage im Verlauf einer medizinischen Rehabilitation.

AIM OF THE STUDY: To analyze the short-term efficacy of the Vocational Perspective programme for patients identified as having extensive work-related problems during rheumatology or orthopaedic inpatient rehabilitation. The primary objectives of the programme on patient level are to convey information about the legal provisions regarding earning incapacity and occupational reintegration, to suggest strategies for dealing with one's own occupational situation, and to strengthen the motivation to stay employed. The programme is explicitly designed for patients who wish to retire or have applied for a pension. On the systemic level, the main goals are to facilitate doctor-patient communication and to increase rehabilitation teams' awareness of occupational problems. METHODS: In a controlled quasi-experimental design, 359 subjects were consecutively assigned to either the control group (CG, n=177) or the intervention group (IG, n=182). The control group received standard care only, whereas the intervention group additionally participated in the 5-part Vocational Perspective programme. Evaluation criteria were assessed by questionnaire at the beginning (t1) and at end of rehabilitation (t2). Survey participation was 92.2% at t2. The socio-medically relevant knowledge status was objectively documented using a specially designed knowledge questionnaire. Aspects of treatment satisfaction were evaluated using individual items, and the subjective prognosis of gainful employment was assessed using the Subjective Prognosis of Gainful Employment (SPE) scale. Facilitation of communication between doctor and patient was operationalized at patient level in terms of patient satisfaction with medical care, and increased awareness of the rehabilitation team was operationalized in terms of the rate of recommendations to apply for vocational reintegration (LTA) services at discharge. Emotional and functional parameters were exploratively analyzed (anxiety and depression using the IRES 3.1 scales, and subjectively experienced pain-related impairment using the Pain Disability Index). RESULTS: Scores for subjective satisfaction with job-related information, medical care, socio-medical assessment, and the overall benefits of rehabilitation were significantly higher in the intervention group than in the control group. IG subjects moreover were better able to use the rehabilitation measure to clarify their occupational situation and exhibited significantly greater improvement of socio-medically relevant knowledge. Age proved to be an important predictor of change in a patient's subjective prognosis for gainful employment (SPE): A positive change in SPE was observed in both groups in subjects under 50, in those aged 50 and older, however, only in the intervention group. No differences between the two groups were observed in terms of functional and emotional parameters (e. g., disability through pain, anxiety, and depression). A total of 60% of the subjects received a recommendation at discharge to apply for vocational reintegration services, the proportion however was significantly higher in the IG. CONCLUSIONS: The Vocational Perspective programme met the patients' high demand for information on relevant socio-medical facilities and services regarding career change and facilitated communication between the doctor and patient by creating greater transparency. The improvement of subjective prognosis for gainful employment observed in the subgroup of older patients indicates that specialized interventions are needed in precisely this disadvantaged group in order to improve their own vocational expectations and thus to improve their chances of reintegration into work life. The high rate of recommendations to apply for vocational reintegration services suggests that rehabilitation teams already have a high awareness of job-related problems even under "usual care" conditions.

["Vocational perspective" - concept and acceptance of a group treatment for patients with extensive work-related problems]. / "Berufliche Zukunft" - Konzept und Akzeptanz eines Behandlungsprogramms bei sozialmedizinisch relevanter beruflicher Problemlage.

BACKGROUND: The treatment programme "Vocational Perspective" was developed for patients with health-related social problems, e. g. long-term sick leave, job loss due to disability, job insecurity and psychosocial disabilities. It intends the patient-oriented imparting of information referring to social system, legal rights, earning capacity and occupational reintegration as well as an early feedback of the sociomedical assessment by the physicians. Participants during in-patient rehabilitation are supported to deal with their occupational situation; motivation to stay employed is strengthened. The group programme contains five psychoeducative modules and an additional sociomedical "ward round". The aim of the study was to examine the acceptance of the newly developed sociomedical vocational therapy module. METHOD: A total of 179 patients participated in 21 "vocational perspective" seminars within the scope of a controlled quasi-experimental trial. In the experimental group the data on acceptance of the treatment was assessed by questionnaire at the end of the intervention. Experiences with implementation of the programme are described in order to complete the patient-related perspective. RESULTS: The identification of a demand for work-related interventions in medical rehabilitation seemed successful: Sociodemographic and socioeconomical parameters of the sample proved high risk in view of the social-medical perspective (poor education, high unemployment rates and long-term sick leave). Self-estimations revealed high suffering of the participants, e. g. due to the occupational situation, anxiety and depression, and confirmed high interest in work-related issues. The patients showed quite high acceptance of the programme (regarding importance of seminar, comprehensibility, usefulness of information, atmosphere of the group, mode and extent of the programme). 82.7% of the participants would recommend the programme to other people with work-related problems. Altogether, the experiences during the implementation of the programme can be described as positive. Nevertheless, organizing took much effort and the treatment was very demanding for the therapists. Finally, it is also necessary that the physicians agree to realize high transparency in the process of sociomedical assessment. CONCLUSION: The sociomedical programme "Vocational Perspective" helps patients to deal with relevant information referring to social system and occupational reintegration. Problematical sociomedical issues can be handled in a therapeutic way during rehabilitation process. Therefore, the programme can be used as meaningful supplement in regular medical rehabilitation. For final conclusions, the results of short-term and follow-up evaluations described elsewhere have to be considered.

[Fractionated inpatient rehabilitation: results from a randomized controlled trial]. / Fraktionierte Rehabilitation: Ergebnisse einer randomisierten, kontrollierten Studie.

The aim of this study was to verify the assumption that fractionated inpatient rehabilitation (three weeks and another week at a future date) is superior to a four-week inpatient treatment for patients with rheumatic diseases (spondyloarthropathies, fibromyalgia, rheumatoid arthritis). This expectation was based on the evidence of only short-term effects of inpatient rehab. Fractionation was intended to prolong and consolidate the effects achieved by the three-week inpatient treatment. Altogether, both groups showed significant positive effects for pain-intensity, activity and state of physical health over a period of more than one year, but there were no statistical effects between the groups. Advantages of fractionated inpatient rehabilitation could not be confirmed.

[Rheumatological rehabilitation today. Exemplified by two case reports]. / Rheumatologische Rehabilitation heute. Veranschaulichung an 2 Fallbeispielen.

Today, medical rehabilitation of patients with rheumatic diseases is based on the International Classification of Functioning, Disability and Health (ICF). In addition to the biomedical view, rehabilitation includes the individuals' activities and participation in society; the ICF integrates personal and environmental factors. Disability due to rheumatic disease results from the health condition itself and its structural and functional limitations as well as individual personal and environmental contextual factors. Two case reports--a patient with early rheumatoid arthritis and a patient with advanced ankylosing spondylitis--illustrate interdisciplinary treatment in medical rehabilitation that is based on the ICF.

[Impact of a motivational intervention on coping with chronic pain: results of a controlled efficacy study]. / Einfluss einer Motivationsintervention auf die Bewältigung chronischer Schmerzen : Ergebnisse einer kontrollierten Wirksamkeitsstudie.

BACKGROUND: For effective self-management of chronic pain changes of cognitive and behavioral attitudes are required. The readiness to change can be described within the framework of the transtheoretical model (TTM) and is facilitated through motivational interviewing. This prospective study evaluated the effectiveness of brief motivational interviewing by telephone for the variables self-efficacy, cognitive and behavioral coping and psychological strain through chronic pain over a period of 9 months. METHODS: Different questionnaires, the self-efficacy expectations (ASES-D), cognitive, behavioral coping and psychological strain through chronic pain (FESV) and the German version of the pain stages of change questionnaires (PSOCQ), the FF-STABS were distributed to 147 patients at a rehabilitation clinic (indications: fibromyalgia syndrome, rheumatoid arthritis, ankylosing spondylitis). The intervention group participants received 3 telephone calls at intervals of 2 months with a follow-up time of 9 months after first study admission. At the end of the study 91 patients were enrolled for analysis (drop out rate 38%). To evaluate the effects of treatment nonparametric-analysis for longitudinal data was used. RESULTS AND CONCLUSION: The analysis showed significant positive effects in the intervention group for cognitive coping (U-value -2.423; p=0.015 group x time-effect) and for coping with emotional strains of chronic pain (subscale anxiety: U-value -2.3618; p=0.018; subscale anger: U-value 2.8638; p=0.004; group x time-effect). No significant effects were shown for self-efficacy expectations and behavioral coping with pain. Further explorative analysis of subgroups revealed slightly better treatment effects for patients with rheumatoid arthritis and ankylosing spondylitis than for those with fibromyalgia syndrome.

[A view Down Under. Self-management initiatives and patient education in Australia]. / Ein Blick Down Under. Selbstmanagementinitiativen und Patientenschulungen in Australien.

The growing burden of chronic disease and the current nature of healthcare systems which are structurally ill-equipped to cater to the complex needs of patients with chronic conditions has led to governments and healthcare providers seeking alternative ways to improve patients own capacity to actively self-manage their chronic condition. In Australia, there has been a focus on patient education and self-management programs within the healthcare system to achieve this. These programs aim to empower patients through providing information and teaching skills and techniques to improve self-care and doctor-patient interaction with the ultimate goal of improving quality of life. Patient education and self-management programs have been supported through several national government initiatives and implemented within the healthcare setting. This paper describes the current position of patient education and self-management within the Australian healthcare system. It further describes a new collaboration project between an Australian and a German research team which aims at translating an assessment questionnaire used in Australia for the evaluation of self-management programs, the "Health Education Impact Questionnaire" ("heiQ"); this instrument is expected to be of significant use in the German rehabilitative system.

[Burden of illness. First routine report on socio-medical consequences of inflammatory rheumatic disease in Germany]. / Krankheitslast. Erste Routineberichterstattung zu sozialmedizinischen Folgen entzündlich-rheumatischer Erkrankungen in Deutschland.

A synopsis of different socio-medical consequences of inflammatory rheumatic diseases is not yet available for Germany. Therefore, the data reported during the past decade for rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematodes, and Wegener's granulomatosis are summarized in this article. Apart from clinical studies, relevant data sources were the national data base of the German collaborative arthritis centres, statistical figures from the compulsory health insurance and the national pension insurance scheme. Data were mainly available for sick leave and work disability showing limitations, which frequently occurred during the early course of diseases and increased with disease duration. Furthermore, different risk factors were identified. Measures to maintain continued participation in the labour force, such as part-time employment, partial work disability instead of full work disability, were not being adequately utilized. Only few data regarding the need of help and care were available. The proportion of patients in need of help and care increased with the duration of rheumatoid arthritis to more than 50% after more than 2 decades. This review presents detailed information concerning aspects of the burden of rheumatic diseases, which are frequently not adequately taken into account. They may be useful for the advice and care of individual patients as well as for decision processes concerning the health care system.