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OBJECTIVES: To assess the acceptability and validity of the 3 levels of the EQ-5D (EQ-5D-3L) compared with the Quality of Life in Alzheimer's Diseases (QoL-AD) in patients living with dementia. METHODS: The analysis was based on 560 dyads of persons with dementia and their caregivers of the multicenter observational study of dementia care networks in Germany (DemNet-D). Health-related quality of life was assessed by face-to-face interviews using the EQ-5D-3L (self-rating) and the QoL-AD (self- and proxy-rating). The number of missing values, the score ranges (observed vs possible range) and the floor and ceiling effects were used to assess the acceptability. We used one-way analyses of variance and multivariate linear regression models to evaluate the discriminative ability. The convergent validity was assessed using Spearman's correlation coefficient (rs) and multivariate regression models. RESULTS: The EQ-5D index had a higher response rate (89% vs 84%) and a comparable floor (>1%) but a higher ceiling effect (18% vs >1%) compared with the QoL-AD. Both measures can significantly differentiate between different stages of general health, instrumental activities of daily living, and depression. The EQ-5D index and the visual analog scale self-rating scores strongly correlated with the QoL-AD self-rating (rs = 0.644 and 0.553, respectively) but not with the proxy-rating score (rs = 0.314 and rs = 0.170, respectively), which was confirmed by multivariate regression analyses. CONCLUSION: The results satisfy acceptability, discriminative ability, and convergent validity for moderately cognitively and functionally impaired patients living with dementia. The EQ-5D-3L performed comparably with the QoL-AD, and could, therefore, be used in economic evaluations in dementia. The differences between self- and proxy-ratings should be evaluated and considered in the interpretation of health-related quality of life scores.
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Enfermedad de Alzheimer/psicología , Cuidadores/psicología , Demencia/psicología , Calidad de Vida , Encuestas y Cuestionarios , Actividades Cotidianas , Anciano , Anciano de 80 o más Años , Depresión/epidemiología , Femenino , Alemania , Humanos , Masculino , Medición de Resultados Informados por el Paciente , Reproducibilidad de los ResultadosRESUMEN
BACKGROUND: In Germany a growing number of community-based support services for people with dementia (PwD) and their caregivers are organized in dementia care networks (DCN), which provide a single point of entry to social facilities and offer personal care and support. OBJECTIVE: The aim of this study was to describe the health, functional and social characteristics of PwDs enrolled in DCNs throughout Germany because no data are currently available on this aspect. MATERIAL AND METHODS: As part of the multi-center, multi-professional 12-month follow-up study DemNet-D, data on functional and psychological health, sociodemographic and dementia-specific factors and social inclusion were collected in standardized interviews with PwDs living at home. RESULTS: A total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50 % had Alzheimer's dementia and more than 75 % demonstrated at least a challenging form of behavior. More than half of the participants lived together with a partner or relative. Instrumental activities of daily living (IADLs) were very limited; nevertheless, one in five PwDs showed no long-term care-dependency level. The participants reported having a relatively low feeling of loneliness and a high feeling of social inclusion, depending on the severity of dementia. CONCLUSION: This is one of the very first studies generating data on PwDs who receive domiciliary care within DCNs in Germany. The results suggest that the regional DCNs make a successful contribution to overcoming the interface problem and can, therefore, contribute to a more stable care situation and better social integration of PwDs.
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Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Redes Comunitarias/estadística & datos numéricos , Demencia/psicología , Demencia/terapia , Grupos de Autoayuda/estadística & datos numéricos , Participación Social/psicología , Anciano de 80 o más Años , Demencia/epidemiología , Femenino , Alemania/epidemiología , Humanos , Soledad/psicología , Masculino , Proyectos Piloto , Prevalencia , Aislamiento Social/psicología , Revisión de Utilización de RecursosRESUMEN
BACKGROUND: Dementia networks in Germany constitute a specialised setting for integrated dementia care and have shown benefits on relevant outcomes, including those of drug treatment. National guidelines recommend treatment with acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine) or the N-Methyl-D-Aspartate antagonist (memantine) to reduce cognitive symptoms. However, prescription rates are lower than 30 % in general practises. This study aims to describe antidementia drug treatment and the factors that are associated with the treatment in different dementia networks across Germany. METHODS: We have analysed the socio-demographic, clinical and utilisation data from 560 patients with dementia (PWD), as well as data from their caregivers, in 13 selected dementia networks in Germany. The patients and caregivers were interviewed in their homes or in the network facilities. Multiple logistic regression models were fitted to evaluate the socio-demographic and clinical factors associated with the utilisation of antidementia drug treatment in the various networks. RESULTS: In all of the networks in the study, 52 % of the participants received an antidementia drug treatment. Factors associated with the utilisation of the antidementia drug treatment were: formal diagnosis (OR = 16.81, p < 0.001), association with a physician in the network (OR = 3.69, p < 0.001), higher number of comorbidities (OR = 0.88, p = 0.039), living alone (OR = 0.51, p = 0.032) and higher age (OR = 2.97, p = 0.002). CONCLUSION: Medical treatment of PWD with antidementia drugs in dementia networks in Germany is more frequent than in primary and nursing home care settings. Our findings also suggest that participants with a formal diagnosis and a physician in the network have increased rates of receiving antidementia drug treatments. These findings suggest that dementia networks focusing on medical treatment should support diagnostic procedures and incorporate physician specialists.
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Demencia/tratamiento farmacológico , Nootrópicos/administración & dosificación , Anciano , Anciano de 80 o más Años , Cuidadores , Inhibidores de la Colinesterasa , Donepezilo , Dopaminérgicos/administración & dosificación , Femenino , Galantamina/administración & dosificación , Alemania , Humanos , Indanos/administración & dosificación , Entrevistas como Asunto , Modelos Logísticos , Masculino , Memantina/administración & dosificación , Fármacos Neuroprotectores/administración & dosificación , Piperidinas/administración & dosificación , Rivastigmina/administración & dosificaciónRESUMEN
Introduction: An important requirement for successful public health interventions is a standardized classification in order to make these health technologies comparable in all contexts and recognized by all parties. The WHO International Classification of Health Interventions (ICHI), including an integrated public health component, has been developed to propose such an international standard. Methods: To test (a) the translation of public health interventions to ICHI codes and (b) the technical handling and general coding in public health, we used a set of public health interventions from a recent cross-sectional survey among Health Technology Assessment professionals. Results: Our study showed that handling of the ICHI interface is stable, that there is a need for specificity and adequate detail of intervention descriptions and desired outcomes to code adequately with ICHI and that the professional background of the coder, as well as his/her sex might influence the selection of codes. Conclusion: International Classification of Health Interventions provides a good coverage of public health interventions. However, the broader character of system wide interventions, often involving a variety of institutions and stakeholders, may present a challenge to the application of ICHI coding. Based on this experience, we would tailor future surveys more specifically to the needs of the classification and we advise training for health professionals before coding with ICHI. Standards of reporting will likely strengthen insights about the efficiency of primary prevention interventions and thus benefit long-term health of populations and structured HTA reporting process.
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Tecnología Biomédica , Salud Pública , Estudios Transversales , Femenino , Humanos , Masculino , Organización Mundial de la SaludRESUMEN
Introduction: Public health (PH) interventions are crucial for ensuring sustainable healthcare services. Nevertheless, they represent a neglected area in the field of health technology assessment (HTA) due to various methodological issues and their complex design that goes beyond clinical setting. The present study provides an environmental scan of HTA initiatives related to the assessment of PH technologies on a global level. Methods: We conducted a cross-sectional survey among 85 HTA-related European and international societies, health bodies, and networks from September 2018 to January 2019. The questionnaire contained four sections and 18 questions regarding activities related to the evaluation of PH technologies, information on existing PH technologies, and methodologies of assessment as well as barriers and facilitators to reaching a decision and implementing a PH technology. Results: Among 52 survey responses, the majority of the respondents came from European countries (35%), followed by North American (27%), and South American (19%) countries. The main type of organizations covered by our survey included HTA agencies, public administrations, and research institutes. Seventy-one % of the institutions reported engagement in any aspect of HTA in the area of PH (N = 37). Among those, 81% evaluated less than 5 PH technologies from 2013 to 2018. The most common barriers for reaching a decision on PH technologies were lack of data, conflicting stakeholder priorities, and methodological issues. A total of 76 PH interventions were reported, and most cited initiatives were related to chronic disease screening, prevention of infectious diseases, and maternal, prenatal, and neonatal screening. Conclusion: Our survey reported a rather limited involvement of HTA in the evaluation of PH technologies. In particular, an evaluation of behavioral and lifestyle interventions remains extremely rare. The implementation of collaborative HTA approaches in the setting of PH practice and policy needs to be prioritized and further strengthened. Moreover, ensuring reliable data structures and consolidation of HTA methods for the evaluation of PH technologies will be crucial for tackling the enormous burden of non-communicable diseases in societies.
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Salud Pública , Evaluación de la Tecnología Biomédica , Tecnología Biomédica , Estudios Transversales , Europa (Continente) , Humanos , Recién NacidoRESUMEN
OBJECTIVE: This study was conducted to describe care arrangements for persons with dementia (PwDs) who are living at home with the support of a dementia care network (DCN). METHOD: Data on the utilization of formal and informal support were collected in face-to-face interviews at baseline and 1-year follow-up with PwDs and caregivers receiving support from 1 of 13 DCNs. RESULTS: Men with dementia were supported by twice as many informal caregivers as women (2 vs. 1, respectively, p < .001). Regional differences were found in home-care nursing services, social care groups, companion home services, and day care. The care situations were considered stable by most caregivers. DISCUSSION: DCNs appear to contribute to a high degree of perceived stability in care situations. Future research should investigate possible gender differences in informal support networks. DCNs should continue their efforts in making low-threshold services in rural areas available and accessible.
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Cuidadores , Redes Comunitarias , Centros de Día/estadística & datos numéricos , Demencia/terapia , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Atención Domiciliaria de Salud/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Demencia/epidemiología , Femenino , Estudios de Seguimiento , Alemania/epidemiología , Humanos , Entrevistas como Asunto , Masculino , Estudios Prospectivos , Factores SexualesRESUMEN
BACKGROUND: There is no common definition for the Dementia Care Network (DCN). They are heterogeneous and there is no general, longitudinal evidence for the effects of DCN. OBJECTIVE: We describe changes in utilization of health services by people served by dementia care networks in Germany and factors associated with those changes over time. METHODS: Primary data was assessed in 560 people with dementia (PwD) and their caregivers supported by DCN in Germany; sociodemographic and clinical variables, utilization of services; DCN were characterized according to governance. The design: observational study with face-to-face interviews at two time points over a period of one year. Data was assessed via semi-structured interviews at the participants' homes. RESULTS: Utilization of health services in this study is consistently higher than reported for the general population and does not significantly change over time. The strongest predictor of utilization of any service after one year was the use of this service at baseline (OR from 3.23 to 44.16). Higher activities of daily functioning increased the chances to utilize specialist physicians (ORâ=â1.32; 95% -CI: 1.08-1.63) or occupational therapy (ORâ=â1.24; 95% -CI: 1.02-1.50) significantly. Being a female decreased chances to utilize specialist physicians (ORâ=â0.57; 95% -CI: 0.37-0.87) and increased the chances to utilize no services (ORâ=â2.08; 95% -CI: 1.29-3.33). CONCLUSION: While health care acknowledges the importance and benefits of dementia care networks (i.e., in Germany, the results were considered in new German legislation (SGB XI)), further research is needed to define this kind of service delivery to facilitate comparison as well as promote evidence-based implementation.
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Atención a la Salud , Demencia/terapia , Servicios de Salud , Aceptación de la Atención de Salud , Anciano , Anciano de 80 o más Años , Cuidadores , Femenino , Alemania , Humanos , Estudios Longitudinales , Masculino , Calidad de VidaRESUMEN
Outpatient dementia healthcare is predominantly fragmented, and dementia networks (DNs) represent an integrated care concept to overcome this problem. Little is known about the patients of these networks with regard to utilisation of physicians and associated factors. We interviewed 560 caregivers of people with dementia in 13 different DNs in Germany in 2013 and assessed socio-demographics, clinical data and physician utilisation. Networks were categorised in predominantly medical DNs and community-oriented DNs. Descriptive and multivariate statistical models were used to identify associated factors between DNs and users' data. Overall, the users of networks received high rates of physician care; 93% of the sample stated at least one contact with a primary care physician within the last 6 months, and 74% had been treated by a specialist (neurology/psychiatry physician). Only 5% of the sample had no contact with a physician in the 6 months preceding the interview. Females showed a lower odds for physician specialist consultations (OR = 0.641). Users of medical DNs receive greater specialist consultations overall (OR = 8.370). Compared to the German general population and people with dementia in other settings, users of DNs receive physician care more regularly, especially with regard to the consultations of neurologist/psychiatrists. Therefore, DNs seem to perform a supportive role within the integration of physician healthcare. More research is needed on the appropriate relationship between the needs of the people with dementia and utilisation behaviour.
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Prestación Integrada de Atención de Salud , Demencia/terapia , Médicos de Atención Primaria/estadística & datos numéricos , Psiquiatría , Anciano , Femenino , Alemania , Humanos , Masculino , Derivación y Consulta , Factores Socioeconómicos , EspecializaciónRESUMEN
BACKGROUND: In general, most people with dementia living in the community are served by family caregivers at home. A similar situation is found in Germany. One primary goal of dementia care networks is to provide information on support services available to these caregiving relatives of people with dementia via knowledge management. The evaluation of knowledge management tools and processes for dementia care networks is relevant to their performance in successfully achieving information goals. One goal of this paper was the analysis of knowledge evaluation in dementia care networks, including potential barriers and facilitators, across Germany within the DemNet-D study. Additionally, the impact of highly formalized and less formalized knowledge management performed in dementia care networks was analyzed relative to family caregivers' feelings of being informed about dementia support services. METHODS: Qualitative data were collected through interviews with and semi-standardized questionnaires administered to key persons from 13 dementia care networks between 2013 and 2014. Quantitative data were collected using standardized questionnaires. A structured content analysis and a mixed-methods analysis were conducted. RESULTS: The analyses indicated that the development of knowledge goals is important for a systematic knowledge evaluation process. Feedback from family caregivers was found to be beneficial for the target-oriented evaluation of dementia care network services. Surveys and special conferences, such as quality circles, were used in certain networks to solicit this feedback. Limited resources can hinder the development of formalized knowledge evaluation processes. More formalized knowledge management processes in dementia care networks can lead to a higher level of knowledge among family caregivers. CONCLUSIONS: The studied tools, processes and potential barriers related to knowledge evaluation contribute to the development and optimization of knowledge evaluation strategies for use in dementia care networks. Furthermore, the mixed-methods results indicate that highly formalized dementia care networks are especially successful in providing information to family members caring for people with dementia via knowledge management.
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BACKGROUND: Nonpharmacological therapies and the provision of aids are described to be supportive in the treatment of persons with dementia (PWDs). These aim to maintain individuals' participation in daily activities as long as possible, to slow the progression of their disease, and to support their independent living at home. However, there is a lack of knowledge about the utilization of therapies and aids among community-dwelling PWDs. OBJECTIVE: The aims of the study were a) to describe the utilization of nonpharmacological therapies and aids among community-dwelling PWDs and b) to analyze the factors associated with utilization. METHOD: As part of a cross-sectional study of n=560 caregivers of PWDs in dementia networks throughout Germany, we assessed sociodemographics, clinical variables, and the utilization of nonpharmacological therapies (physiotherapy [PT], occupational therapy [OT]), and aids (sensory, mobility, and others), using face-to-face interviews and questionnaires. RESULTS: Approximately every fourth PWD received PT and every seventh PWD received OT. Sensory aids were utilized by 91.1%, personal hygiene aids by 77.2%, mobility aids by 58.6%, and medical aids by 57.7% of the sample. Regression analysis revealed that the utilization of PT and medical aids was associated with comorbidities (odds ratio [OR] 1.17 and OR 1.27, respectively) and that the utilization of OT and sensory aids was associated with age (OR 1.06 and OR 0.95, respectively). CONCLUSION: The utilization of nonpharmacological therapies and aids among community-dwelling people served by dementia networks is more frequent than that reported for people in other settings. This result indicates that PWDs in integrated care models such as dementia networks receive better health care.