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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.
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Qualidade de Vida , Ataxias Espinocerebelares , Humanos , Qualidade de Vida/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Ataxias Espinocerebelares/psicologia , Adulto , Estudos Longitudinais , Progressão da Doença , Idoso , Estudos de CoortesRESUMO
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.
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COVID-19 , Humanos , COVID-19/epidemiologia , SARS-CoV-2 , Pandemias/prevenção & controle , Qualidade de Vida , Alemanha/epidemiologia , Estudos Observacionais como AssuntoRESUMO
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.
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Consumo de Bebidas Alcoólicas , Encéfalo , Humanos , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Estudos de Coortes , Encéfalo/diagnóstico por imagem , Envelhecimento , Estresse Psicológico/epidemiologiaRESUMO
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.
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Demência , Humanos , Feminino , Demência/diagnóstico , Fatores de Proteção , Apoio Social , Modelos de Riscos Proporcionais , Expectativa de VidaRESUMO
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.
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Demência , Atenção Primária à Saúde , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Feminino , Idoso , Masculino , Pessoa de Meia-Idade , Demência/psicologia , Estilo de Vida , Inquéritos e QuestionáriosRESUMO
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.
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Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Clínicos Gerais , Serviços de Saúde para Idosos , Idoso , Humanos , Pacientes Ambulatoriais , Assistência AmbulatorialRESUMO
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.
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COVID-19 , Enfermeiras e Enfermeiros , Humanos , Pandemias , Pesquisa Qualitativa , Casas de SaúdeRESUMO
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.
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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.
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COVID-19 , Disfunção Cognitiva , Demência , Idoso , Feminino , Humanos , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/prevenção & controle , Demência/epidemiologia , Demência/prevenção & controle , Pandemias , Qualidade de Vida , Fatores de RiscoRESUMO
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.
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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.
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Atenção à Saúde , Alemanha , Atenção à Saúde/economia , Melhoria de Qualidade , Pesquisa sobre Serviços de Saúde , Difusão de InovaçõesRESUMO
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.
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Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários , Medidas de Resultados Relatados pelo Paciente , Psicometria/métodosRESUMO
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.
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COVID-19 , Transtornos Mentais , Telemedicina , Humanos , Satisfação do Paciente , Pandemias , Estudos de Viabilidade , Controle de Doenças Transmissíveis , Pacientes Ambulatoriais , AlemanhaRESUMO
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.
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Demência , Pessoal de Saúde , Humanos , Atenção à Saúde , Grupos Focais , Pesquisa Translacional Biomédica , Demência/terapia , Pesquisa QualitativaRESUMO
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).
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COVID-19 , Serviços de Assistência Domiciliar , Humanos , Pré-Escolar , Criança , Pandemias , Escolaridade , PaisRESUMO
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.
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Demência , Grupos Minoritários , Humanos , Demência/terapia , Pesquisa Qualitativa , Cuidadores , Alemanha , Minorias Desiguais em Saúde e Populações VulneráveisRESUMO
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.
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Demência , Qualidade de Vida , Humanos , Custos de Cuidados de Saúde , Hospitalização , Demência/tratamento farmacológicoRESUMO
BACKGROUND: In Germany, patients under the age of 18 receive medical care from pediatricians. In sparsely populated regions, general practitioners often have to do the job of pediatricians and offer medical care to children, which in most cases is adequate. However, it does not meet the goal of demand planning namely, every patient should have equal access to care regardless of their place of residence. One option to help achieve this is the implementation of consultation hours with pediatricians in general practitioners' practices (tandem practices). The aim of this study was to investigate the feasibility and acceptance of this cooperation and whether this improved access to pediatric care. METHODS: First, general practitioners willing to participate were identified, where the nearest pediatrician's practice was more than 20 kilometers away. The second step was to find suitable pediatricians willing to offer regular weekly pediatric consultations in the practice of a general practitioner. For the evaluation, various data collection methods were used: one-off parent questionnaires at the time of study inclusion, questionnaires filled out by the pediatricians for each consultation, and data from the practice information systems in the participating practices. The distance between the patients' place of residence and the next regular outpatient pediatrician's practice were calculated and compared to the distance to a tandem practice. RESULTS: In April 2019, in two practices tandem consultation hours were implemented. During 12 months, 192 children and adolescents (50.2% female) were included. They attended the consultation hours a total of 387 times. Of 482 reasons given in the doctor's questionnaire, 36.9% were vaccinations (n=178), 14.9% were preventive examinations (n=72), the most frequently coded ICD-10 diagnostic groups were diseases of the respiratory system (J00-J99: 8.5%, n=41) and mental/behavioral disorders (F00-F99: 7.7%, n=37). Before the project, the patients had an average of 20.2 kilometers (min 0.3; max 34.8) to the next regular outpatient pediatrician's practice; within the project, the distance decreased to 5.1 kilometers (min 0.1; max 26.7). CONCLUSION: All doctors involved wanted to continue the tandem consultations after the end of the test phase. The project results showed the feasibility and a high level of acceptance of tandem practices, both for the doctors involved and for the patients and their parents.
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Clínicos Gerais , Transtornos Mentais , Adolescente , Humanos , Criança , Feminino , Masculino , Alemanha , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Despite a 13.1% increase in the number of pediatricians between 2011 - 2020, the capacity of pediatric care has largely stagnated. This is due to increasing flexibility in working hours and a declining willingness of doctors to establish practices. In addition, there is an imbalance in the distribution of pediatric medical care capacities. While metropolitan areas are often characterized by oversupply, there is an increasing shortage of pediatricians, especially in rural areas. As a result, general practitioners in rural areas are increasingly taking over part of pediatric care. We quantify this compensation effect using the example of examinations of general health and normal child development (U1-U9). METHODS: Basis of the analysis was the Doctors' Fee Scale within the Statutory Health Insurance Scheme (Einheitlicher Bewertungsmaßstab, EBM) from 2015 (4th quarter). Nationwide data from the National Association of Statutory Health Insurance Physicians (KBV) for general practitioners and pediatricians from 2015 was evaluated. In the first step, the EBM was used to determine the potential overlap of services between the two groups of doctors. The actual compensation between the groups was quantified using general health and normal child development as an example. RESULTS: In section 1.7.1 (early detection of diseases in children) of the EBM, there is a list of 16 options for services that can be billed (fee schedule positions, GOP) by general practitioners and pediatricians. This particularly includes child examinations U1 to U9. The analysis of the national data of the KBV for the early detection of diseases in children showed significant differences between rural and urban regions in the billing procedure. Nationwide, general practitioners billed 6.6% of the services in the area of early detection of diseases in children in 2015. In rural regions this share was 23% compared to 3.6% in urban regions. The analysis of the nationwide data showed that the proportion of services billed by general practitioners was higher in rural regions than in urban regions. CONCLUSION: The EBM allows billing of services by both general practitioners and pediatricians, especially in the area of general GOP across all medical groups. The national billing data of the KBV shows that general practitioners in rural regions bill more services from the corresponding sections than in urban regions.
Assuntos
Clínicos Gerais , Reembolso de Seguro de Saúde , Programas Nacionais de Saúde , Pediatras , Adolescente , Criança , Humanos , Clínicos Gerais/estatística & dados numéricos , Alemanha , Programas Nacionais de Saúde/economia , Programas Nacionais de Saúde/estatística & dados numéricos , Pediatras/estatística & dados numéricos , Tabela de Remuneração de Serviços/estatística & dados numéricos , Reembolso de Seguro de Saúde/estatística & dados numéricos , Serviços de Saúde Rural/estatística & dados numéricos , Serviços Urbanos de Saúde/estatística & dados numéricosRESUMO
OBJECTIVES: To describe the characteristics, financing structures and challenges of regional dementia care networks and the use of regional financial network support according to § 45c para. 9 SGB XI. METHODS: The analysis was based on data from 120 dementia networks that provided information on the network characteristics (location, year of foundation, goals, organizational, personnel and financing structure), the challenges and the use of regional network funding according to § 45c Para. 9 SGB XI. Differences in the organizational, personnel and financing structure depending on the network characteristics were analyzed using t-Tests and ANOVA tests. The use of regional network funding (§ 45c Para. 9) were presented descriptively and discussed against the background of the planned amendment for 2022. RESULTS: The majority of networks were established between 2011 and 2015. Most networks had educational and care goals and, on average, 28 stakeholders. Medically-associated and longer-established networks and networks with a legal form had significantly more network partners, persons actively involved in the work of the network and funding sources. The linking of stakeholders and the funding were seen as the most significant challenges. Every tenth network received regional network funding (§45c para. 9) but 28% decided not to receive funding. For most networks (50%), the funding was still unknown. CONCLUSION: Regional dementia networks are very heterogeneously structured. Certain factors can significantly affect the number of partners and funding sources and should, therefore, be considered. Up to now, only one network per region could receive the maximum amount (20,000) of funding according to §45c para. 9, which limits the usability of this funding, especially in densely populated regions. The amendment now increases the number of networks to be funded within one region and the funding level. It remains to be seen to what extent this amendment will increase the use of the regional network funding.