Adaptation and validation of a German version of the Multimorbidity Treatment Burden Questionnaire

BACKGROUND: Patients with multiple long-term conditions often face a variety of challenges arising from the requirements of their health care. Knowledge of perceived treatment burden is crucial for optimizing treatment. In this study, we aimed to create a German version of the Multimorbidity Treatment Burden Questionnaire (MTBQ) and to evaluate its validity. METHODS: The steps to translate the MTBQ included forward/back translation, cognitive interviews (n = 6) and a pilot test (n = 7). Psychometric properties of the scale were assessed in a cross-sectional survey with primary care patients aged 65 and older with at least 3 long-term conditions (n = 344). We examined the distribution of responses, dimensionality, internal reliability and construct validity. RESULTS: Cognitive interviewing and piloting led to minor modifications and showed overall good face validity and acceptability. As expected, we observed a positively skewed response distribution for all items. Reliability was acceptable with McDonald’s omega = 0.71. Factor analysis suggested one common factor while model fit indices were inconclusive. Predefined hypotheses regarding the construct validity were supported by negative associations between treatment burden and health-related quality of life, self-rated health, social support, patient activation and medication adherence, and positive associations between treatment burden and number of comorbidities. Treatment burden was found to be higher in female participants (Mdn(1) = 6.82, Mdn(2) = 4.55; U = 11,729, p = 0.001) and participants with mental health diagnoses (Mdn(1) = 9.10, Mdn(2) = 4.55; U = 3172, p = 0.024). CONCLUSIONS: The German MTBQ exhibited good psychometric properties and can be used to assess the perceived treatment burden of patients with multimorbidity. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12955-022-01993-z

A European research agenda for somatic symptom disorders, bodily distress disorders, and functional disorders: Results of an estimate-talk-estimate delphi expert study

Background: Somatic Symptom Disorders (SSD), Bodily Distress Disorders (BDD) and functional disorders (FD) are associated with high medical and societal costs and pose a substantial challenge to the population and health policy of Europe. To meet this challenge, a specific research agenda is needed as one of the cornerstones of sustainable mental health research and health policy for SSD, BDD, and FD in Europe. Aim: To identify the main challenges and research priorities concerning SSD, BDD, and FD from a European perspective. Methods: Delphi study conducted from July 2016 until October 2017 in 3 rounds with 3 workshop meetings and 3 online surveys, involving 75 experts and 21 European countries. EURONET-SOMA and the European Association of Psychosomatic Medicine (EAPM) hosted the meetings. Results: Eight research priorities were identified: (1) Assessment of diagnostic profiles relevant to course and treatment outcome. (2) Development and evaluation of new, effective interventions. (3) Validation studies on questionnaires or semi-structured interviews that assess chronic medical conditions in this context. (4) Research into patients preferences for diagnosis and treatment. (5) Development of new methodologic designs to identify and explore mediators and moderators of clinical course and treatment outcomes (6). Translational research exploring how psychological and somatic symptoms develop from somatic conditions and biological and behavioral pathogenic factors. (7) Development of new, effective interventions to personalize treatment. (8) Implementation studies of treatment interventions in different settings, such as primary care, occupational care, general hospital and specialty mental health settings. The general public and policymakers will benefit from the development of new, effective, personalized interventions for SSD, BDD, and FD, that will be enhanced by translational research, as well as from the outcomes of research into patient involvement, GP-patient communication, consultation-liaison models and implementation. Conclusion: Funding for this research agenda, targeting these challenges in coordinated research networks such as EURONET-SOMA and EAPM, and systematically allocating resources by policymakers to this critical area in mental and physical well-being is urgently needed to improve efficacy and impact for diagnosis and treatment of SSD, BDD, and FD across Europe

(In-)formal caregivers’ and general practitioners’ views on hospitalizations of people with dementia - an exploratory qualitative interview study

Abstract Background Dementia is an irreversible chronic disease with wide-ranging effects on patients’, caregivers’ and families’ lives. Hospitalizations are significant events for people with dementia. They tend to have poorer outcomes compared to those without dementia. Most of the previous studies focused on diagnoses leading to hospitalizations using claims data. Further factors (e.g. context factors) for hospitalizations are not reproduced in this data. Therefore, we investigated the factors leading to hospitalization with an explorative, qualitative study design. Methods We interviewed informal caregivers (N = 12), general practitioners (GPs, N = 12) and formal caregivers (N = 5) of 12 persons with dementia using a semi-structured interview guideline. The persons with dementia were sampled using criteria regarding their living situation (home care vs. nursing home care) and gender. The transcripts were analyzed using the method of structuring content analysis. Results Almost none of the hospitalizations, discussed with the (in-)formal caregivers and GPs, seemed to have been preventable or seemed unjustifiable from the interviewees’ points of view. We identified several dementia-specific factors promoting hospitalizations (e.g. the neglect of constricted mobility, the declining ability to communicate about symptoms/accidents and the shift of responsibility from person with dementia to informal or formal caregivers) and context-specific factors promoting hospitalizations (e.g. qualification of nursing home personal, the non-availability of the GP and hospitalizations for examinations/treatments also available in ambulatory settings). Hospitalizations were always the result of the interrelation of two factors: illnesses/accidents and context factors. The impact of both seems to be stronger in presence of dementia. Conclusions Points for action in terms of reducing hospitalization rates were: better qualified nurses, a 24-h-GP-emergency service and better compensation for ambulatory monitoring/treatments and house calls. Many hospitalizations of people with dementia cannot be prevented. Therefore, hospital staffs need to be better prepared to handle patients with dementia in order to reduce the negative effects of hospitalizations

Additional file 2: Table S1. of (In-)formal caregivers’ and general practitioners’ views on hospitalizations of people with dementia - an exploratory qualitative interview study

Examples for hospitalizations and interviewees‘ views on preventability. Table showing summarized examples of hospitalizations and interviewees’ views on preventability. (DOCX 17 kb

Regional differences in the patient population of general practices in northern Germany: results of a mixed-methods study

Objectives The aim of our study was to explore patient types in general practitioner (GP) practices and to quantify the regional differences of the frequencies of these patient types in northern Germany.Design and setting We conducted a mixed-methods study based on focus groups and standardised interviews with GPs. All counties and independent cities within a radius of 120 km around Hamburg were assigned one of three regional categories (urban areas, environs, rural areas). The focus groups were analysed using qualitative content analysis. Relative frequencies of consultations by patient types and differences between the regions were calculated. Logistic regression analyses were used to identify differences among regions.Participants Nine focus groups with 65 GPs (67.7% male). From the 280 initially recruited GPs 211 (65.4% male) could be personally interviewed.Results Four themes with 27 patient types were derived from the focus groups: patients classified by morbidity, sociodemographic characteristics, special care needs and patient behaviour. Five patient characteristics were significantly more prevalent in urban areas than rural areas: patients with migration background and culturally different disease concepts (OR 1.23; 95% CI 1.06 to 1.42), privately insured patients (OR 1.17; 95% CI 1.05 to 1.31), educationally disadvantaged patients with low health literacy (OR 1.11; 95% CI 1.04 to 1.19), patients with psychiatric disorders (OR 1.07; 95% CI 1.02 to 1.12) and senior citizens living on their own without caregivers (OR 1.05; 95% CI 1.05 to 1.31). Three patient types were significantly less prevalent in urban areas: minors accompanied by their parents (OR 0.71; 95% CI 0.61 to 0.83), patients with poor therapy adherence (OR 0.87, 95% CI 0.80 to 0.95) and patients with dementia (OR 0.90; 95% CI 0.82 to 0.99).Conclusions GPs could compensate the specific needs of their patients with medical training aligned with the requirements of their region. Urban GPs need skills treating patients with psychiatric, social and cultural problems, rural GPs regarding the care for children or noncompliant patients.Trial registration number NCT0255832

Development of a patient assessment to meet the needs of patients suffering from advanced non-oncological diseases – the KOPAL study

Background To develop an aide memoire for patients diagnosed with advanced non-oncological chronic diseases, the KOPAL conversation guide, to foster interprofessional counselling between GPs and specialist palliative home care teams. Methods As part of the multi-centre, two-arm, cluster randomised controlled KOPAL study, the draft of the conversation guide was discussed and consented in three focus groups with 4 patients, 7 health care providers, and 5 stakeholders. Results The final version of the KOPAL conversation guide contains eight key topics: living with the illness, physical situation, emotional situation, personal situation, social situation, information and communication, control and autonomy, emergency management. Each topic refers to different general points, which are listed on top of the respective thematic section. The conversation should start by addressing the patient’s today’s well-being and end by asking for the patient’s main topic based on the discussed issues. Conclusions The KOPAL conversation guide is a broad evaluation and communication tool that covers potential palliative care (PC) needs of non-oncological patients and provides a basis for interprofessional case planning and counselling. Applying the KOPAL conversation guide may help to bridge the communicative gap between general and specialist PC professionals and between professionals and patients

Study protocol of a systematic review and qualitative evidence synthesis using two different approaches: Healthcare related needs and desires of older people with post-stroke aphasia

Pohontsch NJ, Meyer T, Eisenmann Y, Metzendorf M-I, Leve V, Lentsch V. Study protocol of a systematic review and qualitative evidence synthesis using two different approaches: Healthcare related needs and desires of older people with post-stroke aphasia. BMJ Open. 2021;11(4): e039348.Introduction Stroke is a frequent disease in the older population of Western Europe with aphasia as a common consequence. Aphasia is known to impede targeting treatment to individual patients' needs and therefore may reduce treatment success. In Germany, the postacute care of patients who had stroke is provided by different healthcare institutions of different sectors (rehabilitation, nursing and primary care) with substantial difficulties to coordinate services. We will conduct two qualitative evidence syntheses (QESs) aiming at exploring distinct healthcare needs and desires of older people living with poststroke aphasia. We thereby hope to support the development of integrated care models based on needs of patients who are very restricted to communicate them. Since various methods of QESs exist, the aim of the study embedding the two QESs was to determine if findings differ according to the approach used. Methods and analysis We will conduct two QESs by using metaethnography (ME) and thematic synthesis (ThS) independently to synthesise the findings of primary qualitative studies. The main differences between these two methods are the underlying epistemologies (idealism (ME) vs realism (ThS)) and the type of research question (emerging (ME) vs fixed (ThS)). We will search seven bibliographical databases. Inclusion criteria comprise: patients with poststroke aphasia, aged 65 years and older, studies in German/English, all types of qualitative studies concerning needs and desires related to healthcare or the healthcare system. The protocol was registered in the International Prospective Register of Systematic Reviews, follows Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines and includes three items from the Enhancing Transparency in Reporting the synthesis of Qualitative Research checklist. Ethics and dissemination Ethical approval is not required. Findings will be published in a peer-reviewed journal and presented on national conferences

Diagnostic barriers for somatic symptom disorders in primary care: study protocol for a mixed methods study in Germany

Introduction Somatoform or somatic symptom disorders ((S)SD) are common and have a negative impact on the patients' health-related quality of life, healthcare use and costs. In primary care, which is central to the management of (S) SD, diagnosis and treatment tend to be delayed. There is a significant lack of evidence regarding the barriers in the diagnostic process of (S) SD in primary care and how interventions should be tailored to address them. The aim of this study is to analyse the diagnostic process in primary care that results in the diagnosis or non-diagnosis of a (S) SD. Methods and analysis This mixed methods study will investigate the topic with qualitative methods, subsequently proceeding to a quantitative phase where the initial results will be validated and/or generalised. First, focus groups will explore meanings and patterns, inconsistencies and conflicts in general practitioners' (GPs) thoughts and behaviours when diagnosing (S) SD. Second, the results of these focus groups will be used to develop interview guidelines for subsequent face-to-face interviews. Patients and their treating GPs will be interviewed separately on how they experience the history of illness, the diagnostic process and treatment. Third, based on the results of the first two study parts, a questionnaire will be derived and a nationwide survey among German GPs will be conducted, quantifying the barriers and difficulties identified before. Ethics and dissemination Ethics approval was obtained from the Ethics Committee of the Hamburg Medical Association, Germany (approval number PV4763). The results of this study will be disseminated through conference presentation and publications in peer-reviewed journals