Analysis of the key themes in the healthcare of older people with multimorbidity in Germany: a framework analysis as part of the LoChro trial.

OBJECTIVES: Multimorbidity challenges healthcare systems. In Germany, coordination of healthcare for older multimorbid patients remains unstructured.This study aims to identify key themes in the healthcare of these patients and the inter-relationships between them. DESIGN: Framework analysis of six cases based on 1-year data of primary and secondary care, patient-answered questionnaires and video material. SETTING: Southern Germany. PARTICIPANTS: Six multimorbid older patients participating in a randomised controlled trial that compared usual care with a local, collaborative, stepped and personalised care management approach for older people with chronic diseases (LoChro-trial). The LoChro care intervention involved a care manager who assisted participants in self-management. The primary outcome was a composite of functional health and depressive symptoms at 12 and 18 months. The LoChro-intervention had no effect on the primary outcome. PRIMARY OUTCOME MEASURE: Key themes in the healthcare of older patients with multimorbidity and the inter-relationships between them. METHODS: One-year data included diagnoses, treatment plans, examinations, assessments and discharge reports. Patient perspectives were assessed using the Patient Assessment of Chronic Illness Care. In three cases, videos of the LoChro intervention showed patients describing their health needs. These data were evaluated by three doctors and public health researchers. Using framework analysis, recurring themes influencing the healthcare situation of multimorbid older patients and their inter-relationships were identified. RESULTS: Participants had an average age of 77, with 13 diagnoses, taking eight medications regularly. The five key themes describing the healthcare situation of these multimorbid patients were as follows: insufficient coordination, overuse and underuse of medical care, doctor and patient roles. Each theme covered three to four subcategories. The most significant inter-relationships between these themes were a lack of coordination leading to overuse and underuse of medical care. These were characterised by redundant inpatient stays, potential prescribing omissions and missed examinations. Deficiencies in vaccinations and secondary prevention were also demonstrated. CONCLUSION: Coordination of care for multimorbid older patients in Germany is still deficient. Future healthcare arrangements should be explored with the participation of physicians and patients. TRIAL REGISTRATION NUMBER: LoChro trial: DRKS00013904.

[RECUR - Establishment of An Automated Digital Registry for Patients with Recurrent Stones in the Upper Urinary Tract]. / RECUR ­ Aufbau eines automatisierten digitalen Registers für Patient*innen mit rezidivierenden Steinen des oberen Harntraktes.

Kidney stones, like cardiovascular diseases and diabetes mellitus, affect a large number of people. Patients suffer from acute pain, repeated hospitalizations and associated secondary diseases, such as arterial hypertension and renal insufficiency. This results in considerable costs for the society and its health care system. The recurrence rate is as high as 50%. The registry for RECurrent URolithiasis (RECUR) aims to fill existing evidence gaps. The prospective and longitudinal RECUR registry is funded by the German Ministry of Education and Science (BMBF). It is based on the digital infrastructure of the German Medical Informatics Initiative (MII). RECUR aims to include patients that have suffered from more than one stone occurrence and treated at any one of the ten participating university hospitals of the MIRACUM consortium. The intention is to obtain new information on risk factors and to evaluate different diagnosis and treatment algorithms. Along with the data form the patient's Electronic Health Records (EHR), the RECUR project will also collect Patient Reported Outcomes data from patients with recurrent kidney stones. These data will be collected at participating sites using digital questionnaires via a smartphone app. These data will be merged with medical data from the hospital information systems and saved in the MII research data repositories. The RECUR registry has a model character due to its fully federated, digital approach. This allows the recruitment of many patients, the collection of a wide range of data and their processing with low administrative and personnel costs.

Abnormal FeV1 and body mass index are associated with impaired cough-related quality of life in sarcoidosis patients.

Sarcoidosis is a granulomatous disease that mainly manifests within the lungs and may thereby impair lung function. Beyond and independently from organ impairment, sarcoidosis may affect quality of life which can be quantified by questionnaires. The Leicester Cough Questionnaire (LCQ) has been developed to assess cough-related quality of life. We analysed data from a prospectively collected cohort of sarcoidosis patients for validation of the German LCQ version. Our analyses demonstrated that LCQ values add additional information beyond routinely monitored parameters (e.g. lung function). Only FeV1 and BMI slightly influence LCQ scores, where all other parameters tested did not correlate with LCQ scores. In summary, LCQ is a valuable tool providing information on the patient' quality of life beyond routine follow-up parameters. FeV1 and BMI may represent treatable traits to reduce cough-related disease burden.

Primary dementia care based on the individual needs of the patient: study protocol of the cluster randomized controlled trial, DemStepCare.

BACKGROUND: Most people with dementia (PwD) are cared for at home, with general practitioners (GPs) playing a key part in the treatment. However, primary dementia care suffers from a number of shortcomings: Often, diagnoses are made too late and therapies by GPs do not follow the guidelines. In cases of acute crises, PwD are too often admitted to hospital with adverse effects on the further course of the disease. The aim of this study is to implement and evaluate a new GP-based, complex dementia care model, DemStepCare. DemStepCare aims to ensure demand-oriented, stepped care for PwD and their caregivers. METHODS/DESIGN: In a cluster randomized controlled trial, the care of PwD receiving a complex intervention, where the GP is supported by a multi-professional team, is compared to (slightly expanded) usual care. GPs are clustered by GP practice, with 120 GP practices participating in total. GP practices are randomized to an intervention or a control group. 800 PwD are to be included per group. Recruitment takes place in Rhineland-Palatinate, Germany. In addition, a second control group with at least 800 PwD will be formed using aggregated routine data from German health insurance companies. The intervention comprises the training of GPs, case management including repeated risk assessment of the patients' care situation, the demand-oriented service of an outpatient clinic, an electronic case record, external medication analyses and a link to regional support services. The primary aims of the intervention are to positively influence the quality of life for PwD, to reduce the caregivers' burden, and to reduce the days spent in hospital. Secondary endpoints address medication adequacy and GPs' attitudes and sensitivity towards dementia, among others. DISCUSSION: The GP-based dementia care model DemStepCare is intended to combine a number of promising interventions to provide a complex, stepped intervention that follows the individual needs of PwD and their caregivers. Its effectiveness and feasibility will be assessed in a formative and a summative evaluation. TRIAL REGISTRATION: German Register of Clinical Trials (Deutsches Register Klinischer Studien, DRKS), DRKS00023560 . Registered 13 November 2020 - Retrospectively registered. HTML&TRIAL_ID=DRKS00023560.

[Development of an Intervention to Enhance Health Literacy of Patients with Common Variable Immunodeficiency (CVID)]. / Entwicklung einer Schulung zur Förderung der Gesundheitskompetenz von Patienten mit variablem Immundefekt (CVID).

OBJECTIVE: The aim of the article was to describe the development of a training program to enhance the health literacy of patients with immunodeficiency. In addition, patient satisfaction and acceptance of the training will be evaluated. METHODS: Patients' needs were identified with a questionnaire (N=238). Additionally, interviews with clinical immunologists (N=5) and patients with common variable immunodeficiency (CVID) (N=9) were conducted. On this basis, the authors developed a manual for the intervention. It focuses on active communication with physicians as well as health-related communication at the workplace. The evaluation of patient satisfaction with the intervention was based on a questionnaire (N=49). RESULTS: The results show that the ratings of the patients were in the good to very good range (M=1.77; SD=0.38). From the analysis of the free text, hints for training improvement could be derived. CONCLUSION: Evaluation of the intervention showed that the new training was accepted and patients considered it comprehensible and relevant.

[DNVF Memorandum Health Literacy (Part 1) - Background, Relevance, Research Topics and Questions in Health Services Research]. / DNVF Memorandum Gesundheitskompetenz (Teil 1) ­ Hintergrund, Relevanz, Gegenstand und Fragestellungen in der Versorgungsforschung.

More than half of the German population has difficulties in dealing with health information. It is an important task of health services research to examine how healthcare professionals and health care organizations can meet this challenge. The DNVF Memorandum Health Literacy (Part 1) defines the terms of individual and organizational health literacy, presents the national and international state of research and ethical aspects of health literacy research in health care settings. The relevance of health literacy research is worked out in different phases of life, for different target groups and in different healthcare contexts. Central research topics and future research desiderata are derived.

[DNVF Memorandum Health Literacy (Part 1) - Background, Relevance, Research Topics and Questions in Health Services Research: Short Version]. / DNVF Memorandum Gesundheitskompetenz (Teil 1) ­ Hintergrund, Relevanz, Gegenstand und Fragestellungen in der Versorgungsforschung: Kurzfassung.

More than half of the German population has difficulties in dealing with health information. It is an important task of health services research to examine how healthcare professionals and health care organizations can meet this challenge. This short version of the DNVF Memorandum Health Literacy (Part 1) defines the terms of individual and organizational health literacy, presents the national and international state of research and ethical aspects of health literacy research in health care settings. Central research topics and future research desiderata are derived.

Current Standards in the Endoscopic Management of Bladder Cancer: A Survey Evaluation among Urologists in German-Speaking Countries.

INTRODUCTION: To assess the current diagnostic, treatment, and documentation strategies for bladder cancer (BC) in German-speaking countries. MATERIALS AND METHODS: A 14-item web-based survey was distributed among members of the German, Austrian, and Swiss Associations of Urology, addressing physicians who perform cystoscopies and transurethral resection of bladder tumors (TURB). RESULTS: The survey was responded to by 308 of 5,564 urologists with a mean age of 49.5 years (response rate: 5.5%). The majority of participants (57.3%) practice in an outpatient setting. White light cystoscopy only is used by 60.2%, with additional photodynamic diagnosis and narrow band imaging by 36.8 and 12.5%, respectively. Endoscopic findings are documented in written form by 93.5%, followed by image capture (33.7%) and a central data archive (20.8%). Inpatient hospital urologists document cystoscopic findings by freehand drawing (21.4 vs. 11.4%, p = 0.017), and with a fixed bladder scheme (31.3 vs. 7.4%, <0.05) significantly more frequently. Cystoscopic findings are mainly conveyed to other health professionals in written form (77.4%), and significantly more often by inpatient urologists (p < 0.05). CONCLUSIONS: Significant differences exist in the approach to documenting and communicating cystoscopic BC findings. Accurate graphic documentation of lesions, visualization of the mucosa's totality, and meticulous consultation of previous surgical reports require improvements to reduce recurrence and progression rates.

Prevention of post-splenectomy sepsis in patients with asplenia - a study protocol of a controlled trial.

BACKGROUND: Patients with asplenia have a significantly increased lifelong risk of severe invasive infections, particular post-splenectomy sepsis (PSS). Clear preventive measures have been described in the literature, but previous studies found poor implementation of prevention recommendations. Aim of the study is to improve the adherence to guideline-based preventive measures and thereby reduce the incidence of PSS by a novel telephone-delivered intervention that involves both patients and their physicians. METHODS: A prospective controlled, two-armed historical control group design is used to evaluate the new intervention compared to usual care. The intervention for patients includes both educational aspects and, building on the Health Action Process Approach (HAPA), intervention components that promote motivation and planning of preventive measures. For physicians the intervention is primarily information-based. The primary outcome, the adherence to preventative measures, is indicated by a study-specific 'Preventing PSS-score' (PrePSS-score), which is assessed at baseline and at 6-months follow-up. Secondary outcomes include, amongst others, patient self-efficacy and action-planning, asplenia-specific health literacy, general self-management and asplenia-specific self-management. In a process-evaluating part of the study interview-data on patients' and physicians' evaluation of the intervention will be gathered. DISCUSSION: This trial will provide evidence about the effectiveness of the novel prevention intervention for asplenic patients. If demonstrated beneficial, the intervention manual will be made publicly available to enable implementation in practice. The experience gained within this trial may also be valuable for prevention strategies in patients with other diseases. TRIAL REGISTRATION: German Clinical Trials Register (DRKS): DRKS00015238; Trial registration date 07. December 2018.

[Development of a flexible rehabilitation concept for a neurological in-patient rehabilitation program after stroke]. / Entwicklung eines flexiblen Behandlungskonzepts für die neurologische Anschlussrehabilitation nach Schlaganfall (AOK-proReha Schlaganfall).

OBJECTIVE OF THE STUDY: The aim was to develop an evidence-based treatment concept which describes a standard of performance for stroke patients in neurological follow-up rehabilitation, contracted by a statutory health insurance agency. METHOD: The treatment concept was developed in several steps: a) first of all, a systematic literature search for guidelines was conducted and an online discussion forum was established, followed by b) formation of an expert group, as well as c) two expert workshops, two working groups and several written follow-up surveys. The implementation of the concept was scientifically accompanied by project team members from the eight pilot facilities selected. RESULTS: The treatment concept in its current version provides eleven modules, ten of which refer to the rehabilitation itself and one to the interface of acute care and rehabilitation. An innovative feature of this treatment concept is that the often contradictory demands for standardization and flexibility of individual cases according to the patients' needs are brought in line by freely selectable intensity standards. However, the commitment of a total minimum of therapy times is important. Since mid-March 2018, the treatment concept has been initially implemented in various pilot facilities occupied by the AOK Baden-Württemberg. CONCLUSION: The evidence-based and consensus-based concept is characterized by being individually and flexibly applicable to the individual patient. In this way, it meets the given demands and fulfils the requirements of a heterogeneous group of patients. It is intended to incorporate the treatment concept into the routine healthcare services offered by the AOK Baden-Württemberg. In addition, the treatment concept will be the basis for the development of performance-based remuneration.

Care of (potentially) brain-dead patients: A qualitative study protocol.

AIM: Aim of this study was to describe the experiences of intensive care unit (ICU) nurses, physicians and relatives of (potentially) brain dead patients; and to develop recommendations to optimize the workflows on ICUs. BACKGROUND: Limited published information on caring for brain dead patients suggest it to be a burden for the nursing staff. It also remains unclear how physicians and relatives of (potentially) brain dead patients perceive these experiences. DESIGN: Interpretive phenomenology according to Benner. METHODS: Medical caregivers (nurses' und physicians) from multiple wards in a German University Medical Center and relatives of (potentially) brain dead patients will be interviewed. Data collection will include episodic interviews with participants' experiences in care of (potentially) brain dead patients. The study is funded by the Ministry of Science, Research and the Arts, Baden-Württemberg (1 February 2016). DISCUSSION: Gaining insights into caring for (potentially) brain dead patients and its associated burden will lead to the development of better recommendations to assist all people involved. IMPACT: Expand the understanding of the experience of healthcare professionals in the care for (potentially) brain dead patients. Understand the experience of relatives of (potentially) brain dead patients. Findings from this study will support the development of recommendations for action by a multi-professional expert group consisting of nurses, physicians, healthcare managers and patient advocates. TRIAL REGISTRATION: Protocol version. German Register for Clinical Studies (Registration No. DRKS00010420) Database of Health Services Research Germany (Project Nr. VfD_16_003710).

A complex health services intervention to improve medical care in long-term care homes: study protocol of the controlled coordinated medical care (CoCare) study.

BACKGROUND: Deficits in general and specialized on-site medical care are a common problem in nursing homes and can lead to unnecessary, costly and burdensome hospitalizations for residents. Reasons for this are often organizational obstacles (such as lack of infrastructure or communication channels) and unfavorable compensation structures, which impede the implementation of adequate medical care. The purpose of this study is to evaluate a complex intervention aiming to improve the coordination of medical care in long-term care nursing homes in Germany. The project aims to optimize the collaboration of nurses and physicians in order to reduce avoidable hospital admissions and ambulance transportations. METHODS/DESIGN: In a prospective controlled trial, nursing home residents receiving a complex on-site intervention are compared to residents receiving care/treatment as usual. The study will include a total of around 4000 residents in approximately 80 nursing homes split equally between the intervention group and the control group. Recruitment will take place in all administrative districts of Baden-Wuerttemberg, Germany. The control group focuses on the administrative district of Tuebingen. The intervention includes on-site visits by physicians joined by nursing staff, the formation of teams of physicians, a computerized documentation system (CoCare Cockpit), joint trainings and audits, the introduction of structured treatment paths and after-hours availability of medical care. The project evaluation will be comprised of both a formative process evaluation and a summative evaluation. DISCUSSION: This study will provide evidence regarding the efficacy of a complex intervention to positively influence the quality of medical care and supply efficiency as well as provide cost-saving effects. Its feasibility will be evaluated in a controlled inter-regional design. TRIAL REGISTRATION: WHO UTN: U1111-1196-6611 ; DRKS-ID: DRKS00012703 (Date of Registration in DRKS: 2017/08/23).

[What do rehabilitation patients expect from a telemedicine cardiac rehab aftercare? Results from interviews with rehabilitation patients]. / Welche Erwartungen haben Rehabilitanden an eine telemedizinische kardiologische Reha-Nachsorge? Ergebnisse aus Interviews mit Rehabilitanden.

BACKGROUND: Rehabilitation aftercare programs can enable patients with cardiovascular disease to sustain and improve achievements made during their rehabilitation. However, not every patient is able to attend outpatient aftercare programs, especially if they interfere with professional or social responsibilities. Telemedical alternatives could provide those patients with longer durations or varying degrees of aftercare, regardless of location or time restriction. The present study aimed to investigate what cardiovascular rehabilitation patients expect from a telemedical aftercare program. METHODS: Data was collected in individual semi-structured interviews with cardiovascular rehabilitation patients, where subjects were asked about their expectations towards a telemedical aftercare program. To identify groups of associated topics, the results obtained were analyzed using qualitative content analysis. RESULTS: Nine cardiovascular rehabilitation patients were interviewed (8 male, 1 female). None of the respondents had ever taken part in a telemedical aftercare program; however, eight out of the nine patients indicated their willingness to participate in such a program. Patients preferred telephone-based aftercare programs where they could speak with a member of staff familiar with the patient's clinical picture, circumstances and goals. Some respondents wanted additional web-based services or services via text message. CONCLUSIONS: Overall, the option of telemedical aftercare was viewed favorably by rehabilitation patients as long as the program included personal contact with a healthcare provider. Respondents preferred interaction via familiar media, especially by phone. Low-threshold experiences with new technologies may help overcome reservations and facilitate acceptance of innovative telemedical services in rehabilitation patients. Personal interaction with an attending member of staff should occur throughout aftercare programs, at least occasionally or during initial the stage.

Translation and psychometric properties of the King's Sarcoidosis Questionnaire (KSQ) in German language.

BACKGROUND: King's Sarcoidosis Questionnaire (KSQ) is a novel, validated, health-related quality of life questionnaire on sarcoidosis with 5 scales and 29 items. For future multinational observational and interventional studies on sarcoidosis, a validated German version of the KSQ is needed. The objective of our study is to translate the original KSQ and develop a German version possessing good psychometric properties and with as few modifications as possible. METHODS: We translated the KSQ into German, tested it in structured interviews in sarcoidosis patients, and asked consecutive patients in an outpatient clinic to complete it. We relied on the KSQ's original version to achieve its psychometric properties in the German version. Structural validity, internal consistency, construct validity, and fit to Rasch model were assessed. Our procedure's logic meant that in the first step we optimized the item selection in the German version to maximize its psychometric quality. In step two, we assessed the unmodified version's properties in comparison to the modified version's. RESULTS: One hundred ninety-four patients with sarcoidosis were included and completed the questionnaires. Due to ambiguous factor loadings, four items of the scale "General Health Status" had to be eliminated. Another item was excluded to ensure the Rasch model fit. This modified, 24-item version of the KSQ shows acceptable Rasch model fit and good model fit in confirmatory factor analyses (TLI = 0.90, CFI = 0.91, RMSEA = 0.08). Cronbach's Alpha ranges from 0.82 to 0.91. Several hypotheses concerning construct validity (e.g., correlations with SF-36) are confirmed or partly confirmed. The measurement properties of the original unmodified version are similar in their construct validity and internal consistency; however, we were unable to confirm structural validity and fit to the Rasch model in the original version. CONCLUSIONS: We translated and validated the German KSQ and report good psychometric properties. The reduced 24-item version has the advantage that all scales are unidimensional and fulfil the requirements of the Rasch model, ensuring its benefits. The original 29-item version, on the other hand, allows us to compare German data to international data however, at the price, of less structural validity and the lack of fit to the Rasch model. TRIAL REGISTRATION: This study was registered in the German Clinical Trials Register (reference number DRKS00010072 ). Registered January 2016.

Local, collaborative, stepped and personalised care management for older people with chronic diseases (LoChro): study protocol of a randomised comparative effectiveness trial.

BACKGROUND: Multimorbid older adults suffering from a long-term health condition like depression, diabetes mellitus type 2, dementia or frailty are at high risk of losing their autonomy. Disability and multimorbidity in the older population are associated with social inequality and lead to soaring costs. Our local, collaborative, stepped and personalised care management for older people with chronic diseases (LoChro-Care) aims at improving outcomes for older multimorbid patients with chronic conditions whose social and medical care must be improved. METHODS: The study will evaluate the effects of LoChro-Care on functional health, depressive symptoms and satisfaction with care, resource utilisation as well as health costs in older persons with long-term conditions. The trial will compare the effectiveness of LoChro-Care and usual care in a cross-sectoral setting from hospital to community care. We will recruit 606 older adults (65+) admitted to local hospital inpatient or outpatient departments who are at risk of loss of independence. Half of them will be randomised to receive the LoChro-Care intervention, comprising seven to 16 contacts with chronic care managers (CCM) within 12 months. The hypothesis that LoChro-Care will result in better patient-centred outcomes will be tested through mixed-method process and outcome evaluation and valid measures completed at baseline and at 12 and 18 months. Cost-effectiveness analyses from the healthcare perspective will include incremental cost-effectiveness ratios. DISCUSSION: The trial will provide evidence about the effectiveness of local, collaborative, stepped and personalised care management for multimorbid patients with more than one functional impairment or chronic condition. Positive results will be a first step towards the implementation of a systematic cross-sectoral chronic care management to facilitate the appropriate use of available medical and nursing services and to enhance self-management of older people. TRIAL REGISTRATION: German Clinical Trials Register (DRKS): DRKS00013904 ; Trial registration date: 02. February 2018.

Well informed physician-patient communication in consultations on back pain - study protocol of the cluster randomized GAP trial.

BACKGROUND: Back pain is one of the most frequent causes of health-related work absence. In Germany, more than 70% of adults suffer from at least one back pain episode per annum. It has strong impact on health care costs and patients' quality of life. Patients increasingly seek health information on the internet. However, judging its trustworthiness is difficult. In addition, physicians who are being confronted with this type of information often experience it to complicate the physician-patient interaction. The GAP trial aims to develop, implement and evaluate an evidence-based, easy-to-understand and trustworthy internet information portal on lower back pain to be used by general practitioners and patients during and after the consultation. Effectiveness of GAP portal use compared to routine consultation on improving communication and informedness of both physicians and patients will be assessed. In addition, effects on health care costs and patients' days of sick leave will be evaluated. METHODS: We will conduct a prospective multi-centre, cluster-randomized parallel group trial including 1500 patients and 150 recruiting general practitioners. The intervention group will have access to the GAP portal. The portal will contain brief guides for patients and physicians on how to improve the consultation as well as information on epidemiology, aetiology, symptoms, benefits and harms of treatment options for acute, sub-acute and chronic lower back pain. The GAP portal will be designed to be user-friendly and present information on back pain tailored for either patients or physicians in form of brief fact sheets, educative videos, info-graphics, animations and glossaries. Physicians and patients will assess their informedness and the physician-patient communication in consultations at baseline and at two time points after the consultations under investigation. Days of sick leave and health care costs related to back pain will be compared between control and intervention group using routine data of company health insurance funds. DISCUSSION: The GAP-trial intends to improve the communication between physicians and their patients and the informedness of both groups. If proven beneficial, the evidence-based and user-friendly portal will be made accessible for all patients and health professionals in back pain care. Inclusion of further indications might be implemented and evaluated in the long term. TRIAL REGISTRATION: German Clinical Trials Register DRKS00014279 (registered 27th of April 2018).

Measuring illness perceptions in the family context: psychometric properties of the IPQ-R adapted for adolescent-caregiver dyads.

OBJECTIVES: Given the lack of validated measures assessing illness perceptions in families, the aim of our study was the development and psychometric testing of an adapted version of the Illness Perceptions Questionnaire-Revised (IPQ-R) allowing for Common Sense Model-based dyadic assessment of adolescents' and caregivers' perceptions of a chronic illness in adolescence. METHODS: Using a cross-sectional survey design, factor structure, reliability and validity of the adapted measure You-IPQ-R were tested in a sample of adolescents with asthma (N = 155) and their primary caregivers (N = 132). Analysis included a dyadic methodology (dyadic confirmatory factor analyses) and examination of the suitability of the measure for different age groups. RESULTS: Both the adolescent and the caregiver versions of the You-IPQ-R revealed good overall validity and reliability. For all Common Sense Model dimensions except for timeline cyclical in the caregiver version, unidimensional scales aligning with the original IPQ-R structure could be confirmed. Age-specific analyses revealed good to excellent measurement properties in adolescents aged 14 years or older, but considerably poorer indices in younger adolescents. CONCLUSION: The dyadically validated You-IPQ-R will enable researchers and clinicians to compare illness perceptions in adolescent-caregiver dyads and to assess the effects of family illness perceptions' congruence upon medical, psychosocial and behavioural outcomes.

[Poststroke care in Germany : Results of an online survey of inpatient and outpatient experts in southern Germany]. / Schlaganfallnachsorge in Deutschland : Ergebnisse einer Online-Befragung stationär und ambulant tätiger Experten in Süddeutschland.

BACKGROUND: To avoid long-term care after stroke and to promote occupational reintegration as well as to continue improving rehabilitation results, a good inpatient and outpatient care is necessary. More importantly a gapless transition into aftercare is required. The aim of this study was to gather expert opinions and experiences on the current care process during rehabilitation discharge and aftercare as well as to identify barriers and to discuss possible solutions. METHODS: Clinicians from inpatient neurological rehabilitation, general practitioners and physiotherapists working in outpatient rehabilitation from Baden-Württemberg (BW) and Bavaria (BY) took part in an online survey on poststroke care (n = 77). The following topics were addressed: discharge process into follow-up care, follow-up care after rehabilitation; as well as cooperation and communication in the discharge process and during follow-up care. The online survey was conducted between 1 June 2017 and 3 August 2017 and was descriptively analyzed. RESULTS: The perceptions of inpatient and outpatient experts with respect to significance and barriers of the factors involved in the discharge process and in the aftercare were mainly discrepant. In particular, the interdisciplinary cooperation and communication were criticized. Differences were mentioned depending on the occupational group, when asked about the leading cause that makes it difficult for the patient to return to their home environment. DISCUSSION: Practitioner networks and standardized communication pathways can help to strengthen intradisciplinary and interdisciplinary cooperation and communication and thus achieve an improvement in the discharge process as well as in the aftercare system.

Development and Formative Evaluation of a Communication Skills Training Program for Persons with Rheumatic and Musculoskeletal Diseases.

OBJECTIVE: Our aim was to develop and evaluate a two-module training program (KOKOS-Rheuma) specifically designed to enhance the ability of persons with rheumatic and musculoskeletal diseases to communicate in various everyday situations. DESIGN: KOKOS-Rheuma deals with communication at work (particularly superiors), with physicians, acquaintances, strangers and staff members of authorities and institutions and focuses on communication skills such as "saying no" and "giving and receiving feedback." Members of the German League against Rheumatism (GLR) were trained to deliver the program to self-help groups over two sessions or in a full-day session. The participants, trainers and observers completed a short evaluation form after each module or at the end of the full-day session. MAIN OUTCOME MEASURES: The evaluation was based on 232 participant, 51 trainer, and 8 observer evaluation forms. RESULTS: The participants rated all aspects of the training as good. The training was rated higher in the single session format. The great majority would recommend the course to other people. CONCLUSION: After the revision of the training manual, KOKOS-Rheuma can be recommended for inclusion in the training schedule of the GLR. We recommend that future trainers receive more extensive preparation for delivering the course that highlights the preparation time required.

Psychometric properties of the German version of the Leicester Cough Questionnaire in sarcoidosis.

BACKGROUND: Cough is one of the most common symptoms in general and pulmonary medicine with profound negative impact on health-related quality of life (HRQL). The Leicester Cough Questionnaire (LCQ) is a validated HRQL questionnaire, yet a validated German version of the LCQ is not available and it has never been tested in a cohort with sarcoidosis. OBJECTIVES: To translate the LCQ into German and determine its psychometric properties. METHODS: The LCQ was translated in a forward-backward approach. Structured interviews in sarcoidosis patients were performed. Subsequently, sarcoidosis patients were asked to answer the German LCQ and comparative questionnaires. Distribution properties, item difficulty, concurrent validity, Rasch model fit and internal consistency of the German LCQ were determined. RESULTS: 200 patients with sarcoidosis were included. We provide evidence for reliability, unidimensionality and internal consistency. However, only a moderate correlation with general and respiratory-specific HRQL questionnaires, no Rasch model fit could be shown. Skewed responses caused by floor effects were detected. CONCLUSION: We demonstrate that the German LCQ is valid and reliable and its psychometric properties fulfil the standards required for its use in clinical settings as well as in interventional trials.