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1.
Am J Alzheimers Dis Other Demen ; 39: 15333175241257849, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828622

RESUMO

While regular physical-activity (PA) is beneficial, multimorbid individuals at increased dementia risk may exhibit reduced PA levels. Thus, a more comprehensive understanding of mediating factors responsible for inactivity in this population is needed. This study investigated the impact of a multimodal intervention on PA changes at 24-month follow-up and associated mediating factors among community-dwelling patients aged 60-77, with increased dementia risk determined by the CAIDE Dementia Risk Score. Of 1030 participants recruited, 819 completed the assessment. Thus, a generalized estimating equations model initially assessed differences in PA over 24 months, followed by a tree analysis identifying mediating factors influencing PA changes post-intervention. While no significant effect on regular PA was found during the follow-up (P = .674), subgroup analysis revealed improved self-efficacy (P = .000) associated with increased engagement in PA. Incorporating self-efficacy elements into future strategies is crucial for promoting PA among individuals with multimorbidity and at increased dementia risk.


Assuntos
Demência , Exercício Físico , Autoeficácia , Humanos , Masculino , Feminino , Idoso , Exercício Físico/fisiologia , Pessoa de Meia-Idade , Vida Independente , Seguimentos , Multimorbidade , Fatores de Risco
2.
J Alzheimers Dis ; 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38875036

RESUMO

Background: Determining unmet need patterns and associated factors in primary care can potentially specify assessment batteries and tailor interventions in dementia more efficiently. Objective: To identify latent unmet healthcare need patterns and associated sociodemographic and clinical factors. Methods: This Latent Class Analysis (LCA) includes n = 417 community-dwelling people living with dementia. Subjects completed a comprehensive, computer-assisted face-to-face interview to identify unmet needs. One-hundred-fifteen predefined unmet medical, medication, nursing, psychosocial, and social care needs were available. LCA and multivariate logistic regressions were performed to identify unmet needs patterns and patient characteristics belonging to a specific pattern, respectively. Results: Four profiles were identified: [1] "few needs without any psychosocial need" (n = 44 (11%); mean: 7.4 needs), [2] "some medical and nursing care needs only" (n = 135 (32%); 9.7 needs), [3] "some needs in all areas" (n = 139 (33%); 14.3 needs), and [4] "many medical and nursing needs" (n = 99 (24%); 19.1 needs). Whereas the first class with the lowest number of needs comprised younger, less cognitively impaired patients without depressive symptoms, the fourth class had the highest number of unmet needs, containing patients with lower health status, less social support and higher comorbidity and depressive symptoms. Better access to social care services and higher social support reduced unmet needs, distinguishing the second from the third class (9.7 versus 14.3 needs). Conclusions: Access to the social care system, social support and depressive symptoms should be assessed, and the patient's health status and comorbidities monitored to more comprehensively identify unmet needs patterns and more efficiently guide tailored interventions.

3.
Alzheimers Res Ther ; 16(1): 133, 2024 Jun 22.
Artigo em Inglês | MEDLINE | ID: mdl-38909256

RESUMO

BACKGROUND: Aim of this study was to detect predictors of better adherence to the AgeWell.de-intervention, a two-year randomized multi-domain lifestyle intervention against cognitive decline. METHODS: Data of 317 intervention group-participants comprising a risk group for dementia (Cardiovascular Risk Factors, Ageing and Dementia (CAIDE) score of ≥ 9; mean age 68.9 years, 49.5% women) from the AgeWell.de intervention study were analysed. Regression models with four blocks of predictors (sociodemographic, cognitive and psychosocial, lifestyle factors and chronic conditions) were run on adherence to the components of nutrition, enhancement of social and physical activity and cognitive training. Adherence to each component was operationalised by assessing the degree of goal achievement per component at up to seven time points during the intervention period, measured using a 5-point Likert scale (mean score of goal achievement). RESULTS: Increasing age was negatively associated with adherence, while higher education positively predicted adherence. Participants with better mental state (Montreal Cognitive Assessment (MoCA)-score > 25) at baseline and higher self-efficacy adhered better. Diabetes and cardiovascular conditions were not associated with adherence, whereas smoking negatively affected adherence. Highest education and quitting smoking in the past were the only predictors associated with all four intervention components. CONCLUSION: Results identified predictors for better and worse adherence. Particularly self-efficacy seems to be of considerable influence on adherence. This should be considered when designing future intervention trials. TRIAL REGISTRATION: German Clinical Trials Register (ref. number: DRKS00013555).


Assuntos
Disfunção Cognitiva , Estilo de Vida , Autoeficácia , Humanos , Feminino , Masculino , Idoso , Disfunção Cognitiva/prevenção & controle , Disfunção Cognitiva/psicologia , Cooperação do Paciente/psicologia , Pessoa de Meia-Idade , Exercício Físico/psicologia , Demência/psicologia , Demência/prevenção & controle , Demência/epidemiologia , Idoso de 80 Anos ou mais
4.
Alzheimers Dement (N Y) ; 10(2): e12486, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38899046

RESUMO

INTRODUCTION: The aim of this study was to analyze discrepancies between self- and proxy-rated health-related quality of life (HRQoL), measured with the EuroQol 5 Dimension 5 Level survey (EQ-5D-5L), in people living with dementia (PlwD) and their caregivers on an individual response level. METHODS: EQ-5D-5L, sociodemographic and clinical data were obtained from baseline data of n = 174 dyads of a cluster-randomized, controlled intervention trial. Self- and proxy-rated EQ-5D-5L health profiles were evaluated in terms of response distribution and agreement (weighted Kappa), and discrepancies in individual dimension level were analyzed using the Paretian Classification of Health Change (PCHC) as well as the presence and degree of inconsistencies between ratings. RESULTS: PlwD had a mean age of 80.1, nearly the half were female and 82.3% were mildly to moderately cognitively impaired. PlwD reported a higher utility index than caregiver proxies (mean 0.75 vs. 0.68, 83% of PlwD > 0.5). According to the PCHC and inconsistency approach, 95% of PlwD rated their health differently compared to proxies; 66% with divergent responses in at least three EQ-5D-5L dimensions. Nine dyads (5%) showed identical ratings. Discrepancies of one higher or lower EQ-5D-5L response represented the most frequent discrepancy (35.4%). Caregivers were two times more likely to report "moderate problems," representing the middle of the 5-point Likert scale. Usual activities had the lowest agreement between ratings (weighted kappa = 0.23). In PlwD reporting no or some problems in EQ-5D-5L-dimensions, proxies were more likely to report more problems and vice versa, especially in the more observable dimension usual activities and less likely in the less observable domains pain/discomfort and anxiety/depression. DISCUSSION: The central tendency bias observed in proxy-ratings could be associated with assessment uncertainties, resulting in an underestimation (overestimation) in PlwD reporting better (worse) health. This diverging trend extends the knowledge from previous studies and underlines the need for more methodological research in this area. Highlights: People living with dementia (PlwD) rate their health differently than proxies.Proxy-ratings over- or underestimate PlwD health when self-ratings are low or high.Proxies indicate a possible central tendency bias.Further research is needed to understand influencing factors.

5.
J Alzheimers Dis ; 99(4): 1235-1242, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38759002

RESUMO

Background: Caregivers of people with dementia living at home (CPwDh) are likely to be affected by a range of health problems. However, CPwDh are often regarded as accompanying persons and receive less attention in research and care. Little is known about this population and their needs in Germany. However, better knowledge of CPwDH is needed to design effective interventions. Objective: The objective of this report is to describe the situation of CPwDh and highlight differences based on sex and living situation. Methods: This was a cross-sectional analysis of the psychosocial characteristics of participants in the GAIN trial, a cluster-randomized, controlled intervention trial investigating the effectiveness of a care management program. A total of n = 192 CPwDh were recruited in GP offices, memory clinics or through public campaigns in the German federal state of Mecklenburg-Western Pomerania. The inclusion criteria were an age of 18 years or above, being a CPwDh, written informed consent. In a comprehensive digital assessment, psychosocial variables, burden, and care needs were assessed. Results: Partners, women, and people living in the same household represented the majority of caregivers, and their mean number of needs was 8.7. Overall, participants indicated a mild to moderate burden. There are differences in burden based on sex and living situation, with caregivers living with people with dementia showing less burden and different psychosocial demographics. Conclusions: There is a need for interventions to reduce caregivers' unmet needs in the CPwDh. Such interventions should consider differences in sex and living situation to better address individual caregiver needs.


Assuntos
Cuidadores , Demência , Humanos , Feminino , Masculino , Cuidadores/psicologia , Demência/psicologia , Demência/enfermagem , Alemanha/epidemiologia , Idoso , Estudos Transversais , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Necessidades e Demandas de Serviços de Saúde , Avaliação das Necessidades
7.
Qual Life Res ; 33(7): 1841-1851, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38740640

RESUMO

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.


Assuntos
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 Questionários
8.
J Alzheimers Dis ; 98(4): 1443-1455, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38607756

RESUMO

Background: Studies demonstrate associations between low social activity in older adults and cognitive decline. Little has been investigated regarding which factors are associated with low social activity in older adults at increased risk of dementia. Objective: We investigate which sociodemographic, psychological, health-related, and environmental factors are associated with low social activity in older adults at increased risk of dementia. Additionally, we describe the stages of health behavior change, the types of social activities, and the duration of the current level of social activity. Methods: We used baseline data of 1,015 participants from the AgeWell.de trial. We conducted logistic and Poisson regression analyses to investigate factors associated with low social activity. We report descriptive statistics on the stages of change in the sample, the types of social activities most frequently pursued, and the duration of the current level of social activity. Results: Lower income, non-usage of public transport, depressive symptoms, cognitive, mobility, and hearing impairment were negatively associated with social activity. The majority of the sample was in the maintenance stage, followed by the precontemplation stage. The most common social activities were traveling and hobbies with others. Participants have maintained their current level of social activity for several years. Conclusions: We identified a lack of resources (income, transport), depressive symptoms and poorer health (cognitive, mobility and hearing impairment) as barriers to social activity. Interventions promoting social activity in older adults at risk of dementia may specifically target individuals with these risk factors. Low-threshold opportunities for social activity may be particularly beneficial.


Assuntos
Disfunção Cognitiva , Demência , Perda Auditiva , Humanos , Idoso , Estudos Transversais , Disfunção Cognitiva/psicologia , Comportamento Social , Demência/epidemiologia , Demência/psicologia , Perda Auditiva/psicologia
9.
BMC Health Serv Res ; 24(1): 458, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38609972

RESUMO

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.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Clínicos Gerais , Serviços de Saúde para Idosos , Idoso , Humanos , Pacientes Ambulatoriais , Assistência Ambulatorial
10.
J Alzheimers Dis ; 99(2): 559-575, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38669533

RESUMO

Background: The healthcare needs of People living with Dementia (PlwD) (such as Alzheimer's disease) are often unmet. Information about the needs of community-dwelling PlwD and their association with sociodemographic and clinical characteristics is needed to fill the knowledge gap regarding factors influencing unmet needs among PlwD and to conduct a comprehensive needs assessment to develop tailored interventions. Objective: To describe sociodemographic and clinical characteristics of the InDePendent study population with particular reference to determinants of unmet needs. Methods: We analyzed baseline data of the multi-centre cluster-randomized controlled trial (InDePendent) using descriptive statistics to describe patients' sociodemographic and clinical characteristics and Poisson regression models to predict unmet needs, separated by sex. Data were collected personally via face-to-face interviews. Results: Most of the n = 417 participating PlwD were mild to moderately cognitively impaired, were not depressed, had an average of 10.8 diagnoses, took 6.7 medications, and had, on average, 2.4 unmet needs (62% of PlwD had at least one unmet need) measured by the Camberwell Assessment of Need for the Elderly (CANE). Low social support, a high body-mass-index, a lower education, functional impairment, and worse health status were associated with more unmet needs, regardless of sex. In women, higher unmet needs were associated with more depressive symptoms, a poor financial situation, living alone and not being recently treated by a general practitioner. In males, unmet needs increased with the number of medications taken. Conclusions: PlwD had a broad array of unmet healthcare needs, indicating primary healthcare provision improvement potentials. The results underscore the significance of early assessment of patient's clinical characteristics and unmet needs as a basis for individualized gender-sensible intervention strategies.∥ClinicalTrials.gov Identifier: NCT04741932, Registered on February 5, 2021.


Assuntos
Demência , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Feminino , Demência/epidemiologia , Demência/psicologia , Idoso , Idoso de 80 Anos ou mais , Avaliação das Necessidades , Vida Independente , Apoio Social , Fatores Sociodemográficos
12.
Age Ageing ; 53(3)2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38497234

RESUMO

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.


Assuntos
Demência , Humanos , Feminino , Demência/diagnóstico , Fatores de Proteção , Apoio Social , Modelos de Riscos Proporcionais , Expectativa de Vida
13.
J Agric Food Chem ; 72(11): 5898-5911, 2024 Mar 20.
Artigo em Inglês | MEDLINE | ID: mdl-38459945

RESUMO

In view of potential future changes of German food legislation with regard to cheese product quality parameters, this study aimed to evaluate the quality of whey protein-enriched semihard cheese (WPEC). Model WPEC was produced in a pilot plant and on an industrial scale by adding defined amounts of high-heat (HH) milk to the cheese milk and comprehensively analyzed during cheese processing. The dry matter, total protein, pure protein, fat, and sodium chloride content of six-week ripened cheese samples were not significantly different (p < 0.05) when the technologically necessary heating of the curd was adapted to the amount of HH milk. However, the ripening, firmness, and melting behavior of WPEC was different compared to cheese without HH milk. During ripening, no formation of whey protein peptides was observed, but differences in the amount of some bitter peptides deriving from the casein fraction were found. Sensory data suggested a slightly more bitter taste perception by the panelists for the WPEC. Further technological adjustments are recommended to obtain marketable WPEC.


Assuntos
Queijo , Animais , Queijo/análise , Proteínas do Soro do Leite/química , Leite/química , Paladar , Peptídeos/análise , Manipulação de Alimentos , Soro do Leite
14.
Z Evid Fortbild Qual Gesundhwes ; 185: 35-44, 2024 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-38388280

RESUMO

In Germany, there are 1.8 million people currently living with dementia, and the trend is rising. In particular, the health system at the transition from hospital to outpatient care is facing major challenges given the high increase in a difficult patient clientele. Legal efforts have been undertaken (sect. 39a of the Fifth Social Code Book [SGB V]) to close the care gaps in the discharge and transfer process. This article aims to provide an overview of the documentation process of the discharge and transfer management for people with cognitive impairments in everyday clinical practice according to SGB V sect. 39 para. 1a after the Discharge Management Act came into force. Furthermore, the manuscript answers the research question "How is the statutory discharge management of people with cognitive impairments (MmkB) aged 65 and over documented" and highlights further characteristics of the discharge documentation for MmkB starting with the transition from the inpatient setting to other care settings. In order to answer the research question(s), a qualitative content analysis of all discharge documents available at the time of discharge was carried out as part of the intervention study on cross-sector care management to support cognitively impaired people during and after a hospital stay [intersec-CM], which was funded by the Federal Ministry of Education and Research. The results of the analysis show that, despite legal efforts, there are currently no standardized, unified processes of discharge management for people with cognitive impairments that can be traced in writing. However, departments with a large proportion of vulnerable patient groups were able to offer valuable insights: for example, their discharge documents included a short social history. Further evidence-based research and development in the domain of discharge management for people with cognitive impairments remains essential.


Assuntos
Disfunção Cognitiva , Demência , Humanos , Alta do Paciente , Alemanha , Hospitalização , Demência/terapia , Disfunção Cognitiva/terapia
15.
Gesundheitswesen ; 86(6): 451-462, 2024 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-38365218

RESUMO

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.


Assuntos
Atenção à Saúde , Alemanha , Atenção à Saúde/economia , Melhoria de Qualidade , Pesquisa sobre Serviços de Saúde , Difusão de Inovações
17.
Psychiatr Prax ; 2024 Jan 25.
Artigo em Alemão | MEDLINE | ID: mdl-38272039

RESUMO

OBJECTIVE: The aim is to analyze pandemic-related effects on everyday life and psychosocial health in the understudied vulnerable group of cognitively impaired elderly people living at home. METHODS: Structured telephone interviews in 2020 (n+=+141) and 2021 (n+=+107) were used to survey over-65s with cognitive impairment (MMSE Ø 23.4). The results from the 2021 survey presented here reflect experiences and attitudes, effects on daily life and health care, and psychosocial burdens and resources. Longitudinal analysis of selected indicators of burden is provided for n+=+66. RESULTS: Even in the face of increasing concerns and moderate impacts on everyday life and health care, overall psychosocial health is proving to be good and largely stable over time. CONCLUSION: Respondents have high levels of personal and social resources, and their coping with limitations is characterized by acceptance and willingness to adapt.

18.
Cerebellum ; 2024 Jan 27.
Artigo em Inglês | MEDLINE | ID: mdl-38279001

RESUMO

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.

19.
Infection ; 52(1): 93-104, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37434025

RESUMO

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.


Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , SARS-CoV-2 , Pandemias/prevenção & controle , Qualidade de Vida , Alemanha/epidemiologia , Estudos Observacionais como Assunto
20.
J Adv Nurs ; 80(3): 1043-1057, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37775954

RESUMO

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.


Assuntos
COVID-19 , Enfermeiras e Enfermeiros , Humanos , Pandemias , Pesquisa Qualitativa , Casas de Saúde
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