Factors Influencing Health-Related Quality of Life of Patients with Spinocerebellar Ataxia.

BACKGROUND: Little is known about the progression of health-related quality of life (HRQoL) and predicting factors in spinocerebellar ataxia (SCA). Such knowledge is crucial to identify modifiable factors promoting everyday life with SCA and attenuating HRQoL decline. OBJECTIVES: This study is to assess HRQoL progression and identify factors affecting SCA patients' HRQoL. METHODS: Longitudinal data (three-year follow-up) of 310 SCA patients of the European SCA3/Machado-Joseph-Disease Initiative (ESMI) (2016-2022) and 525 SCA patients (SCA1, SCA2, SCA3 or SCA6) of the EUROSCA natural history study cohort (2006-2015) were assessed. Both large cohort studies share standardized assessments of clinical measures, SARA, INAS, PHQ-9, and HRQoL (EQ-5D-3L). The association between HRQoL and clinical measures was assessed by Spearman Correlation (rs). Multivariable panel regression models were performed to evaluate the impact of patients' socio-demographics, age of onset, SCA type and body mass index (BMI), and clinical measures on HRQoL progression. RESULTS: HRQoL significantly decreased over one (- 0.014, p = 0.095), two (- 0.028, p = 0.003), and three years (- 0.032, p = 0.002). Ataxia severity and mental health strongly correlated with HRQoL (rsSARA = - 0.589; rsPHQ-9 = - 0.507). HRQoL more intensively declined in male (ß = - 0.024, p = 0.038) patients with an earlier age of onset (ß = 0.002, p = 0.058). Higher progression of ataxia severity (ß = - 0.010, p ≤ 0.001), mental health problems (ß = - 0.012, p < 0.001), and higher BMI (ß = - 0.003, p = 0.029) caused more severe decline of patients' HRQoL over time. DISCUSSION: In absence of curative treatments, stronger focus on mental health and weight influence could help clinical evaluation and accompany treatment improving SCA patients' HRQoL, especially in male patients with early disease onset.

Analysis of acute COVID-19 including chronic morbidity: protocol for the deep phenotyping National Pandemic Cohort Network in Germany (NAPKON-HAP).

BACKGROUND: The severe acute respiratory syndrome corona virus 2 (SARS-CoV-2) pandemic causes a high burden of acute and long-term morbidity and mortality worldwide despite global efforts in containment, prophylaxis, and therapy. With unprecedented speed, the global scientific community has generated pivotal insights into the pathogen and the host response evoked by the infection. However, deeper characterization of the pathophysiology and pathology remains a high priority to reduce morbidity and mortality of coronavirus disease 2019 (COVID-19). METHODS: NAPKON-HAP is a multi-centered prospective observational study with a long-term follow-up phase of up to 36 months post-SARS-CoV-2 infection. It constitutes a central platform for harmonized data and biospecimen for interdisciplinary characterization of acute SARS-CoV-2 infection and long-term outcomes of diverging disease severities of hospitalized patients. RESULTS: Primary outcome measures include clinical scores and quality of life assessment captured during hospitalization and at outpatient follow-up visits to assess acute and chronic morbidity. Secondary measures include results of biomolecular and immunological investigations and assessment of organ-specific involvement during and post-COVID-19 infection. NAPKON-HAP constitutes a national platform to provide accessibility and usability of the comprehensive data and biospecimen collection to global research. CONCLUSION: NAPKON-HAP establishes a platform with standardized high-resolution data and biospecimen collection of hospitalized COVID-19 patients of different disease severities in Germany. With this study, we will add significant scientific insights and provide high-quality data to aid researchers to investigate COVID-19 pathophysiology, pathology, and chronic morbidity.

Association Between Psychosocial Stress and Brain Aging: Results of the Population-Based Cohort Study of Health in Pomerania (SHIP).

OBJECTIVE: Recent studies suggest that psychosocial factors can have an impact on brain health. Yet, it is unclear whether psychosocial stress affects aging of the brain. The aim of the study was to investigate the association between psychosocial stress and brain aging. METHODS: Data from the German population-based cohort Study of Health in Pomerania (N=991; age range 20-78 years) were used to calculate a total psychosocial stress score by combining subscores from five domains: stress related to the living situation, the occupational situation, the social situation, danger experiences, and emotions. Associations with brain aging, indicated by an MRI-derived score quantifying age-related brain atrophy, were estimated by using regression models adjusted for age, gender, education, diabetes, problematic alcohol consumption, smoking, and hypertension. RESULTS: The relative risk ratio for advanced brain aging was 1.21 (95% CI=1.04-1.41) for stress related to emotions in fully adjusted models. The interactions between stress related to emotions and mental health symptoms were also significantly associated with advanced brain aging. The association between higher total psychosocial stress and brain aging was not statistically significant. CONCLUSIONS: These findings highlight that high stress related to emotions is associated with advanced brain aging. To protect brain health in older age, more research is needed to explore the role of emotional distress.

What influences life expectancy in people with dementia? Social support as an emerging protective factor.

BACKGROUND: The aim of this study was to investigate the role of support from the social environment for the life expectancy in people with dementia beyond well-established individual demographic and clinical predictors over a period of up to 8 years. METHODS: The analyses are based on data from 500 community-dwelling individuals in Germany who tested positive for dementia and were followed up for up to 8 years. Life expectancy was examined in relation to perceived social support as well as well-established socio-demographic (age, sex) and clinical predictors (cognitive status, functional status, comorbidities), using Cox regressions. RESULTS: Greater support from the social environment reduced the risk of mortality (hazard ratio [HR]: 0.78; 95% confidence interval [CI]: 0.63-0.98), with the role of emotional support being particularly important. Furthermore, higher age was associated with an increased mortality risk (HR: 1.08; 95% CI: 1.05-1.11), while female sex (HR: 0.64; 95% CI: 0.48-0.85) and higher cognitive (HR: 0.96; 95% CI: 0.93-0.98) and functional status (HR: 0.91; 95% CI: 0.86-0.97) were associated with higher life expectancy. CONCLUSION: Our study provides novel evidence that less support from the social environment, especially emotional support, is a risk factor for shorter life expectancy in people with dementia-beyond known clinical factors. Not only the clinical and caregiving needs but also their psychosocial needs of individuals with dementia should be emphasised.

Quality of life in a high-risk group of elderly primary care patients: characteristics and potential for improvement.

PURPOSE: Quality of Life (QoL) is associated with a bandwidth of lifestyle factors that can be subdivided into fixed and potentially modifiable ones. We know too little about the role of potentially modifiable factors in comparison to fixed ones. This study examines four aspects of QoL and its associations with 15 factors in a sample of elderly primary care patients with a high risk of dementia. The main objectives are (a) to determine the role of the factors in this particular group and (b) to assess the proportion of fixed and potentially modifiable factors. METHOD: A high-risk group of 1030 primary care patients aged between 60 and 77 years (52.1% females) were enrolled in "AgeWell.de," a cluster-randomized, controlled trial. This paper refers to the baseline data. The multi-component intervention targets to decrease the risk of dementia by optimization of associated lifestyle factors. 8 fixed and 7 modifiable factors potentially influencing QoL served as predictors in multiple linear regressions. RESULTS: The highest proportion of explained variance was found in psychological health and age-specific QoL. In comparison to health-related QoL and physical health, the modifiable predictors played a major role (corr. R2: 0.35/0.33 vs. 0.18), suggesting that they hold a greater potential for improving QoL. CONCLUSION: Social engagement, body weight, instrumental activities of daily living, and self-efficacy beliefs appeared as lifestyle factors eligible to be addressed in an intervention program for improving QoL. TRIAL REGISTRATION: German Clinical Trials Register, reference number: DRKS00013555. Date of registration: 07.12.2017.

Quality over quantity - rethinking social participation in dementia prevention: results from the AgeWell.de trial.

BACKGROUND: Social participation as a protective factor against cognitive decline was one of the targets in the AgeWell.de study, a multi-domain interventional trial in a sample of older adults at increased risk for dementia. This study aimed to examine differential effects of the intervention and other influencing factors on social participation throughout the trial. METHODS: A longitudinal analysis of study data at the primary follow-up after 24 months (n = 819) was conducted. The Lubben Social Network Scale (LSNS-6) was used to assess quantitative aspects of social networks, and self-reported social activities were classified using a three-tiered categorical framework to capture qualitative aspects. RESULTS: A positive effect of the intervention was observed at the qualitative framework level, with an OR of 1.38 [95% CI: 1.05-1.82] for achieving or maintaining higher social participation at follow-up, while no effect could be detected on quantitative social network characteristics. Later phases of the Covid-19 pandemic showed a negative impact on the level of social participation at follow-up with an OR of 0.84 [95% CI: 0.75-0.95]. CONCLUSIONS: These findings suggest that by focusing on qualitative aspects of social participation as a component of dementia prevention, future interventions can promote enriched social interactions within established social networks. TRIAL REGISTRATION: German Clinical Trials Register (DRKS) ID DRKS00013555.

Outpatient geriatric health care in the German federal state of Mecklenburg-Western Pomerania: a population-based spatial analysis of claims data.

BACKGROUND: Due to unidentified geriatric needs, elderly patients have a higher risk for developing chronic conditions and acute medical complications. Early geriatric screenings and assessments help to identify geriatric needs. Holistic and coordinated therapeutic approaches addressing those needs maintain the independence of elderly patients and avoid adverse effects. General practitioners are important for the timely identification of geriatric needs. The aims of this study are to examine the spatial distribution of the utilization of outpatient geriatric services in the very rural Federal State of Mecklenburg-Western Pomerania in the Northeast of Germany and to identify regional disparities. METHODS: Geographical analysis and cartographic visualization of the spatial distribution of outpatient geriatric services of patients who are eligible to receive basic geriatric care (BGC) or specialized geriatric care (SGC) were carried out. Claims data of the Association of Statutory Health Insurance Physicians in Mecklenburg-Western Pomerania were analysed on the level of postcode areas for the quarter periods between 01/2014 and 04/2017. A Moran's I analysis was carried out to identify clusters of utilization rates. RESULTS: Of all patients who were eligible for BGC in 2017, 58.3% (n = 129,283/221,654) received at least one BCG service. 77.2% (n = 73,442/95,171) of the patients who were eligible for SGC, received any geriatric service (BGC or SGC). 0.4% (n = 414/95,171) of the patients eligible for SGC, received SGC services. Among the postcode areas in the study region, the proportion of patients who received a basic geriatric assessment ranged from 3.4 to 86.7%. Several regions with statistically significant Clusters of utilization rates were identified. CONCLUSIONS: The widely varying utilization rates and the local segregation of high and low rates indicate that the provision of outpatient geriatric care may depend to a large extent on local structures (e.g., multiprofessional, integrated networks or innovative projects or initiatives). The great overall variation in the provision of BGC services implicates that the identification of geriatric needs in GPs' practices should be more standardized. In order to reduce regional disparities in the provision of BGC and SGC services, innovative solutions and a promotion of specialized geriatric networks or healthcare providers are necessary.

Potential for reducing dementia risk: association of the CAIDE score with additional lifestyle components from the LIBRA score in a population at high risk of dementia.

OBJECTIVES: Various dementia risk scores exist that assess different factors. We investigated the association between the Cardiovascular Risk Factors, Aging, and Incidence of Dementia (CAIDE) score and modifiable risk factors in the Lifestyle for Brain Health (LIBRA) score in a German population at high risk of Alzheimer's disease. METHOD: Baseline data of 807 participants of AgeWell.de (mean age: 68.8 years (SD = 4.9)) were analysed. Stepwise multivariable regression was used to examine the association between the CAIDE score and additional risk factors of the LIBRA score. Additionally, we examined the association between dementia risk models and cognitive performance, as measured by the Montreal Cognitive Assessment. RESULTS: High cognitive activity (ß = -0.016, p < 0.001) and high fruit and vegetable intake (ß = -0.032, p < 0.001) correlated with lower CAIDE scores, while diabetes was associated with higher CAIDE scores (ß = 0.191; p = 0.032). Although all were classified as high risk on CAIDE, 31.5% scored ≤0 points on LIBRA, indicating a lower risk of dementia. Higher CAIDE and LIBRA scores were associated with lower cognitive performance. CONCLUSION: Regular cognitive activities and increased fruit and vegetable intake were associated with lower CAIDE scores. Different participants are classified as being at-risk based on the dementia risk score used.

Inactive nurses' willingness to return to active nursing during the COVID-19 pandemic: A qualitative study.

AIMS: To investigate factors that influence the willingness of inactive nurses to return to nursing in a crisis situation and to identify aspects that need to be considered with regard to a possible deployment. DESIGN: A deductive and inductive qualitative content analysis of semi-structured focus group interviews. METHODS: Semi-structured focus group interviews with inactive or marginally employed nurses, nurses who have been inactive for some time and nursing home managers in October and November 2021. The participating inactive nurses had declared their willingness for a deployment during the COVID-19 pandemic or not. Data were analysed using qualitative content analysis. RESULTS: Communication was seen as essential by the participants for an informed decision for or against a temporary return to nursing and to potential or actual deployments. To make them feel safe, inactive nurses need to know what to expect and what is expected of them, for example, regarding required training and responsibilities. Considering their current employment status, some flexibility in terms of deployment conditions is needed. A remaining attachment to care can trigger a sense of duty. Knowledge of (regular) working conditions in nursing can lead to both a desire to support former colleagues and a refusal to be exposed to these conditions again. CONCLUSION: Past working experiences and the current employment situation play a major role in the willingness of inactive nurses to return to nursing in a crisis situation. Unbureaucratic arrangements must be provided for those who are willing to return. SUMMARY STATEMENT: What already is known - In crisis situations, not every inactive nurse is willing or able to return to nursing and therefore, the 'silent reserve' may not be as large as suspected. What this paper adds - Inactive nurses need to know what to expect and what is expected of them for their decision regarding a return to active patient care during a crisis situation. Implications for practice/policy - Inactive nurses need to be informed and should be offered free training and refresher courses to ensure patient safety. IMPACT: This research shows that the group of inactive nurses are not a silent workforce which can be activated anytime. Those who are able and willing to return to direct patient care in crisis situations need the best possible support - during and between crises. REPORTING METHOD: This study adhered to COREQ guidelines. NO PATIENT OR PUBLIC CONTRIBUTION: The involvement of patients or members of the public did not apply for the study, as the aim was to gain insight into the motivations and attitudes of the group of inactive nurses.

Effects of a multidomain intervention against cognitive decline on dementia risk profiles - Results from the AgeWell.de trial.

INTRODUCTION: Dementia risk scores constitute promising surrogate outcomes for lifestyle interventions targeting cognitive function. We investigated whether dementia risk, assessed using the LIfestyle for BRAin health (LIBRA) index, was reduced by the AgeWell.de intervention. METHODS: Secondary analyses of the AgeWell trial, testing a multicomponent intervention (including optimization of nutrition, medication, and physical, social, and cognitive activity) in older adults with increased dementia risk. We analyzed data from n = 461 participants with complete information on risk/protective factors comprised by LIBRA at the 24-month follow-up. Intervention effects on LIBRA and LIBRA components were assessed using generalized linear models. RESULTS: The intervention reduced LIBRA scores, indicating decreased dementia risk at follow-up (b = -0.63, 95% confidence interval [CI]: -1.14, -0.12). Intervention effects were particularly due to improvements in diet (odds ratio [OR]: 1.60, 95% CI: 1.16, 2.22) and hypertension (OR: 1.61, 95% CI: 1.19, 2.18). DISCUSSION: The AgeWell.de intervention reduced dementia risk. However, several risk factors did not improve, possibly requiring more intensive interventions. HIGHLIGHTS: The AgeWell.de intervention reduced dementia risk according to LIfestyle for BRAin health (LIBRA) scores. Beneficial effects on LIBRA are mainly due to changes in diet and blood pressure. A pragmatic lifestyle intervention is apt to reduce dementia risk in an at-risk population.

A multidomain intervention against cognitive decline in an at-risk-population in Germany: Results from the cluster-randomized AgeWell.de trial.

INTRODUCTION: We investigated the effectiveness of a multidomain intervention to preserve cognitive function in older adults at risk for dementia in Germany in a cluster-randomized trial. METHODS: Individuals with a Cardiovascular Risk Factors, Aging, and Dementia (CAIDE) risk score ≥ 9 aged 60 to 77 years were recruited. After randomization of their general practitioner (GP), patients received a multidomain intervention (including optimization of nutrition and medication, and physical, social, and cognitive activity) or general health advice and GP treatment as usual over 24 months. Primary outcome was global cognitive performance (composite z score, based on domain-specific neuropsychological tests). RESULTS: Of 1030 participants at baseline, n = 819 completed the 24-month follow-up assessment. No differences regarding global cognitive performance (average marginal effect = 0.010, 95% confidence interval: -0.113, 0.133) were found between groups at follow-up. Perceived restrictions in intervention conduct by the COVID-19 pandemic did not impact intervention effectiveness. DISCUSSION: The intervention did not improve global cognitive performance. HIGHLIGHTS: Overall, no intervention effects on global cognitive performance were detected. The multidomain intervention improved health-related quality of life in the total sample. In women, the multidomain intervention reduced depressive symptoms. The intervention was completed during the COVID-19 pandemic.

Implementation of a telemedical urgency assessment procedure in the pediatric emergency room: evaluation results. / Implementation eines telemedizinischen Dringlichkeitseinschätzung-Verfahrens in der pädiatrischen Notaufnahme ­ Evaluationsergebnisse.

BACKGROUND: In rural areas in Germany, the number of emergency departments with pediatric expertise decreases. Telemedicine solutions are used sporadically, but they lack certain parameters for assessing a child's health status, such as touch and smell. We tested and evaluated the implementation of a telemedical, cross-hospital urgency assessment in pediatric emergency rooms. The telemedical urgency assessments were carried out via video conferences and were compared to the usual on-site procedure. Primary results of the concordance analysis have been published elsewhere. This work describes the results of the evaluation of the implementation. METHODS: The telemedical urgency assessment was carried out in 5 pediatric emergency departments during the years 2015-2019. Various methods were used to evaluate the implementation. The following reports are based on (a) a parent questionnaire with two statements to be evaluated (entire project duration), (b) a survey of the physicians using telemedicine after each case (entire project duration) and (c) detailed process documentation (July 2017 until end of the project). RESULTS: A total of 266 patients under 18 years old, recruited from four hospitals, were included in the study. (a) 210 parents completed the questionnaire. 78% of the parents felt adequately cared for and 70% could imagine telemedicine becoming established as a future supplementary care procedure. (b) The physicians' questionnaires for the telemedicine site were completed in 232 cases (87%). The average satisfaction rating was 1.8 on a 6-point-likert-scale (95% confidence interval: 1.64; 1.95). (c) The most frequent implementation problem concerned the technical implementation of the video conference. The evaluation of the accompanying documentation revealed in particular implementation barriers in the technical area (e. g. limited video and/or audio quality) and in the provision of human resources. CONCLUSION: Despite implementation barriers, the project showed that telemedical urgency assessment in acute pediatric care is a promising option for supporting care. Most of the participating clinicians needed a high level of support, which in some cases indicated a rather low level of digital competence. Increasing acceptance of telemedicine functionalities requires changes in society as a whole with improved framework conditions.

[Does the Innovation Fund Improve Healthcare Provision? A Critical Assessment of the Status of Implementing Successful Innovation Fund Projects into Healthcare Practice]. / Verbessert der Innovationsfonds die Versorgung? Eine kritische Bestandsaufnahme zum Stand der Implementierung erfolgreicher Innovationsfondsprojekte in die Versorgungspraxis.

INTRODUCTION: Since 2015, the Federal Joint Committee (G-BA)'s Innovation Fund has been supporting projects in health services research and new health service models ("Neue Versorgungsformen", NVF). By the end of 2022, 211 projects in the NVF category had been funded. A key objective is the transfer of successful projects into standard care. This article analyzes previous projects regarding their incorporation into routine care based on transfer recommendations of the Innovation Fund Committee ("Innovationsausschuss" IA). METHOD: Descriptive analysis of all projects completed by August 1, 2023 with transfer recommendations in the "NVF" funding stream. Presentation by topic, project duration, time until IA transfer decision, categorization, and number of institutions and organizations (recipients) addressed per project, their feedback published on the G-BA website, response rates per recipient group, and a content classification and interpretation of exemplary feedback. Recommendations based on the results and their discussion in an expert workshop. RESULTS: Out of 57 NVF projects, 17 had a transfer recommendation. A total of 57 feedback responses were received from a total of 431 recipients addressed by the IA across these projects. Response rates varied significantly. One-third of inquiries to the G-BA and its member organizations received a response (31%), while only every fifth inquiry to federal states (18%) and professional societies (18%) got a response. Less than one in ten inquiries to the Federal Ministry of Health (8%), administrative bodies (6%), and the German Medical Association (0%) received a response. Project-specific feedback within a recipient group was often contradictory or limited to regional scope. DISCUSSION AND CONCLUSION: The transfer process reveals significant structural and procedural obstacles regarding the incorporation of projects evaluated as successful into routine health care. To ensure that funding from the innovation fund is most effectively used, there needs to be a realistic chance of successful transfer of positive project outcomes into routine care. The DNVF recommends stronger involvement of rule-competent institutions, mandatory publication of responses, structured moderation of the transfer process, expanding types of selective contracts, financing of implementation phases and of studies drawing on results across successful NVF projects.

[Integration of Inventory Data from Cohort and Registry Studies into an Existing Research Network: National Pandemic Cohort Network (NAPKON)]. / Integration von Bestandsdaten aus Kohorten- und Registerstudien in ein existierendes Forschungsnetzwerk: Nationales Pandemie Kohorten Netz (NAPKON).

In the early phase of the COVID-19 pandemic, many local collections of clinical data on patients infected with SARS-CoV-2 were initiated in Germany. As part of the National Pandemic Cohort Network (NAPKON) of the University Medicine Network, the "Integration Core" was established to design the legal, technical and organisational requirements for the integration of inventory data into ongoing prospective data collections and to test the feasibility of the newly developed solutions using use cases (UCs). Detailed study documents of the data collections were obtained. After structured document analysis, a review board evaluated the integrability of the data in NAPKON according to defined criteria. Of 30 university hospitals contacted, 20 responded to the request. Patient information and consent showed a heterogeneous picture with regard to the pseudonymised transfer of data to third parties and re-contact. The majority of the data collections (n=13) met the criteria for integration into NAPKON; four studies would require adjustments to the regulatory documents. Three cohorts were not suitable for inclusion in NAPKON. The legal framework for retrospective data integration and consent-free data use via research clauses (§27 BDSG) was elaborated by a legal opinion by TMF - Technology, Methods and Infrastructure for Networked Medical Research, Berlin. Two UCs selected by the NAPKON steering committee (CORKUM, LMU Munich; Pa-COVID-19, Charité- Universitätsmedizin Berlin) were used to demonstrate the feasibility of data integration in NAPKON by the end of 2021. Quality assurance and performance-based reimbursement of the cases were carried out according to the specifications. Based on the results, recommendations can be formulated for various contexts in order to create technical-operational prerequisites such as interoperability, interfaces and data models for data integration and to fulfil regulatory requirements on ethics, data protection, medical confidentiality and data access when integrating existing cohort data. The possible integration of data into research networks and their secondary use should be taken into account as early as the planning phase of a study - particularly with regard to informed consent - in order to maximise the benefits of the data collected.

Measuring context that matters: validation of the modular Tele-QoL patient-reported outcome and experience measure.

PURPOSE: A setting-sensitive instrument for assessing Quality of Life (QoL) in Telemedicine (TM) was unavailable. To close this gap, a content-valid "add-on" measure was developed. In parallel, a brief index was derived featuring six items that summarise the main content of the multidimensional assessment. After pre- and pilot-testing, the psychometric performance of the final measures was investigated in an independent validation study. METHODS: The questionnaires were applied along with other standardised instruments of similar concepts as well as associated, yet disparate concepts for validation purposes. The sample consisted of patients with depression or heart failure, with or without TM (n = 200). Data analyses were aimed at calculating descriptive statistics and testing the psychometric performance on item, scale, and instrument level, including different types of validity and reliability. RESULTS: The proposed factor structure of the multidimensional Tele-QoL measure has been confirmed. Reliability coefficients for internal consistency, split-half, and test-retest reliability of the subscales and index reached sufficient values. The Tele-QoL subscales and the index demonstrated Rasch scalability. Validity of both instruments can be assumed. Evidence for discriminant construct validity was provided. Known-groups validity was indicated by respective score differences for various classes of disease severity. CONCLUSION: Both measures show convincing psychometric properties. The final multidimensional Tele-QoL assessment consists of six outcome scales and two impact scales assessing (un-)intended effects of TM on QoL. In addition, the Tele-QoL index provides a short alternative for outcome assessment. The Tele-QoL measures can be used as complementary modules to existing QoL instruments capturing healthcare-related aspects of QoL from the patients' perspective.

Telemedicine treatment of patients with mental disorders during and after the first COVID-19 pandemic lockdown in Germany - an observational study on feasibility and patient satisfaction.

INTRODUCTION: In response to the COVID-19 pandemic, a general lockdown was enacted across Germany in March 2020. As a consequence, patients with mental health conditions received limited or no treatment in day hospitals and outpatient settings. To ensure continuity of care, the necessary technological preparations were made to enable the implementation of telemedical care via telephone or video conferencing, and this option was then used as much as possible. The aim of this study was to investigate the satisfaction and acceptance with telemedical care in a heterogeneous patient group of psychiatric outpatients in Germany during the first COVID-19 lockdown. METHODS: In this observational study, patients in ongoing or newly initiated outpatient psychiatric therapy as well as those who had to be discharged from the day clinic ahead of schedule received telemedical treatment via telephone. Data collection to assess the patients' and therapists' satisfaction with and acceptance of the telemedical care was adjusted to the treatment setting. RESULTS: Of 60 recruited patients, 57 could be included in the analysis. 51.6% of the patients and 52.3% of their therapists reported that the discussion of problems and needs worked just as well over the phone as in face-to-face consultations. In the subgroup of patients who were new to therapy due to being discharged from hospital early, acceptance was higher and telemedicine was rated as equally good in 87.5% of contacts. Both patients and therapists felt that telemedicine care during lockdown was an alternative for usual therapy in the outpatient clinic and that the option of telemedicine care should continue for the duration of the coronavirus pandemic. DISCUSSION: The results show a clear trend towards satisfaction with and acceptance of telemedicine care in a heterogeneous group of unselected psychiatric patients. Although the number of patients is small, the results indicate that the mostly positive results of telemedicine concepts in research projects can probably be transferred to real healthcare settings. CONCLUSIONS: Telemedicine can be employed in healthcare for psychiatric patients either an alternative treatment option to maintain continuity of care or as a potential addition to regular care.

Design and implementation of the participatory German network for translational dementia care research (TaNDem): A mixed-method study on the perspectives of healthcare providers and dementia researchers in dementia care research.

BACKGROUND: Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. OBJECTIVES: The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. METHODS: Within an exploratory sequential mixed-method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. RESULTS: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. CONCLUSION: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long-term, effective collaboration and added value for practice and research. PATIENT OR PUBLIC CONTRIBUTION: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text.

Cohort Profile: evaluation of the targeted individual promotion in german preschools using the revised Dortmund Developmental Screening for Preschools DESK 3-6 R (project "GIF MV").

This dynamic cohort was established to evaluate the targeted individual promotion of children affected by developmental risks as part of the German federal state law for child day-care and preschools in Mecklenburg-Western Pomerania. The project has been conducted in preschools in regions with a low socio-economic profile since 2011. Since 2017, the revision of the standardized Dortmund Developmental Screening for Preschools (DESK 3-6 R) has been applied. Developmental risks of 3 to 6-year-old children in the domains of motor, linguistic, cognitive and social competencies are monitored. The cohort is followed up annually. In 2020, n = 7,678 children from n = 152 preschools participated. At the baseline (2017), n = 8,439 children participated. Due to the defined age range of this screening, 3,000 to 4,000 5-6-year-old children leave the cohort annually. Simultaneously, an approximately equal number of 3-year-old children enters the cohort per survey wave. N = 702 children participated in all 4 survey waves. On the basis of DESK 3-6 R scores available from survey waves 2017 to 2019 it is possible to compute expected values for the survey wave 2020 and to compare those with the measured values to evaluate the effects of the COVID-19 pandemic (i.e. parental home care due to restrictions related to COVID-19).

Pathways of care: a qualitative study of barriers and facilitators to engaging dementia care among underserved and minority populations in the US and Germany.

OBJECTIVE: To identify barriers and facilitators to the use of formal dementia services among underserved and minority groups (UMG) in the United States and Germany. METHOD: Semi-structured qualitative interviews with caregivers (N = 18) of persons with dementia in the United States and Germany. Data were analyzed using thematic analysis. RESULTS: Caregivers described their experiences in three stages of seeking, initiating, and utilizing care, and different factors served to hinder or enable the use of care services in each stage. The most important factors included limited knowledge about dementia, challenges interacting with healthcare systems, and how closely formal services met the expectations and needs of caregivers, particularly with regard to accommodating cultural or ethnic/racial identity. Caregivers preferred interacting with service care providers who shared a similar identity to receive information or services. CONCLUSION: Barriers and facilitators to using dementia care services vary by stage of engaging services and may be shared across different healthcare contexts. Targeting specific barriers and strengthening facilitators could help reduce disparities in dementia care among UMG.

Impact of low-value medications on quality of life, hospitalization and costs - A longitudinal analysis of patients living with dementia.

INTRODUCTION: This study aimed to analyze the impact of low-value medications (Lvm), that is, medications unlikely to benefit patients but to cause harm, on patient-centered outcomes over 24 months. METHODS: This longitudinal analysis was based on baseline, 12 and 24 months follow-up data of 352 patients with dementia. The impact of Lvm on health-related quality of life (HRQoL), hospitalizations, and health care costs were assessed using multiple panel-specific regression models. RESULTS: Over 24 months, 182 patients (52%) received Lvm at least once and 56 (16%) continuously. Lvm significantly increased the risk of hospitalization by 49% (odds ratio, confidence interval [CI] 95% 1.06-2.09; p = 0.022), increased health care costs by €6810 (CI 95% -707€-14,27€; p = 0.076), and reduced patients' HRQoL (b = -1.55; CI 95% -2.76 to -0.35; p = 0.011). DISCUSSION: More than every second patient received Lvm, negatively impacting patient-reported HRQoL, hospitalizations, and costs. Innovative approaches are needed to encourage prescribers to avoid and replace Lvm in dementia care. HIGHLIGHTS: Over 24 months, more than every second patient received low-value medications (Lvm). Lvm negatively impact physical, psychological, and financial outcomes. Appropriate measures are needed to change prescription behaviors.