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2.
J Am Med Dir Assoc ; 25(9): 105150, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39009066

RESUMEN

OBJECTIVES: Previous research in the general population shows more potentially inappropriate medications (PIMs) among persons with a migration background compared with persons without a migration background. This study investigated the association between non-Western (nw) migration background (MB) and dementia-specific PIMs in older adults with dementia in the Netherlands. DESIGN: Cohort study using routinely recorded electronic health records and administrative data. SETTING AND PARTICIPANTS: Electronic health record data of general practitioners from the NIVEL-Primary Care Database, were linked to registries managed by Statistics Netherlands (2013-2014). A total of 9055 community-dwelling older adults with dementia were included, among whom 294 persons had an nw-MB from Africa, South America, or Asia, based on their country of birth. METHODS: We determined the presence of dementia-specific PIM prescriptions and compared this between persons with an nw-MB and without an MB, using logistic regression analysis adjusted for follow-up time, age, registered sex, and total number of prescriptions. Interaction effects of potentially relevant covariates were tested. The 3 largest nw-MB groups in the Netherlands were analyzed separately. RESULTS: Dementia-specific PIMs were less frequently prescribed to persons with an nw-MB compared to persons without an MB with a dementia diagnosis [30.6% vs 34.4%, odds ratio (OR) 0.71, 95% CI 0.54-0.92], with especially less often a benzodiazepine prescription in the group with an nw-MB, compared to persons without an MB (15.0% vs 19.3%, OR 0.61, 95% CI 0.43-0.84). Dementia duration, living alone, household income, and degree of urbanization did not influence the associations. CONCLUSIONS AND IMPLICATIONS: Among older adults with dementia in the Netherlands, persons with an nw-MB had less often a dementia-specific PIM prescription compared to persons without an MB. Whether this difference is a reflection of better quality of care, higher professional uncertainty, or less recognition of (mental) health problems in persons with an nw-MB and dementia, needs further investigation.


Asunto(s)
Demencia , Lista de Medicamentos Potencialmente Inapropiados , Humanos , Demencia/tratamiento farmacológico , Masculino , Femenino , Países Bajos , Anciano , Lista de Medicamentos Potencialmente Inapropiados/estadística & datos numéricos , Anciano de 80 o más Años , Estudios de Cohortes , Prescripción Inadecuada/estadística & datos numéricos , Registros Electrónicos de Salud
3.
Br J Gen Pract ; 74(746): e628-e636, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38724188

RESUMEN

BACKGROUND: Unplanned admissions to hospital represent a hazardous event for older people. Timely identification of high-risk individuals using a prediction tool may facilitate preventive interventions. AIM: To develop and validate an easy-to-use prediction model for unplanned admissions to hospital in community-dwelling older adults using readily available data to allow rapid bedside assessment by GPs. DESIGN AND SETTING: This was a retrospective study using the general practice electronic health records of 243 324 community-dwelling adults aged ≥65 years linked with national administrative data to predict unplanned admissions to hospital within 6 months. METHOD: The dataset was geographically split into a development (n = 142 791/243 324, 58.7%) and validation (n = 100 533/243 324, 41.3%) sample to predict unplanned admissions to hospital within 6 months. The performance of three different models was evaluated with increasingly smaller selections of candidate predictors (optimal, readily available, and easy-to-use models). Logistic regression was used with backward selection for model development. The models were validated internally and externally. Predictive performance was assessed by area under the curve (AUC) and calibration plots. RESULTS: In both samples, 7.6% (development cohort: n = 10 839/142 791, validation cohort: n = 7675/100 533) had ≥1 unplanned hospital admission within 6 months. The discriminative ability of the three models was comparable and remained stable after geographic validation. The easy-to-use model included age, sex, prior admissions to hospital, pulmonary emphysema, heart failure, and polypharmacy. Its discriminative ability after validation was AUC 0.72 (95% confidence interval = 0.71 to 0.72). Calibration plots showed good calibration. CONCLUSION: The models showed satisfactory predictive ability. Reducing the number of predictors and geographic validation did not have an impact on predictive performance, demonstrating the robustness of the model. An easy-to-use tool has been developed in this study that may assist GPs in decision making and with targeted preventive interventions.


Asunto(s)
Medicina General , Hospitalización , Humanos , Anciano , Femenino , Masculino , Estudios Retrospectivos , Hospitalización/estadística & datos numéricos , Medición de Riesgo , Anciano de 80 o más Años , Registros Electrónicos de Salud , Vida Independiente , Datos de Salud Recolectados Rutinariamente , Factores de Riesgo , Admisión del Paciente/estadística & datos numéricos
5.
Learn Health Syst ; 8(2): e10392, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38633020

RESUMEN

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data.

6.
Int J Geriatr Psychiatry ; 39(5): e6094, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38666781

RESUMEN

OBJECTIVES: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia. METHODS: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis. RESULTS: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. CONCLUSIONS: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs.


Asunto(s)
Demencia , Costos de la Atención en Salud , Humanos , Demencia/economía , Demencia/terapia , Masculino , Femenino , Anciano , Costos de la Atención en Salud/estadística & datos numéricos , Estudios Longitudinales , Anciano de 80 o más Años , Estudios de Casos y Controles , Servicios de Atención de Salud a Domicilio/economía , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Registros Electrónicos de Salud/estadística & datos numéricos , Institucionalización/economía , Institucionalización/estadística & datos numéricos , Persona de Mediana Edad , Cuidados a Largo Plazo/economía , Cuidados a Largo Plazo/estadística & datos numéricos
7.
J Appl Gerontol ; 42(7): 1404-1413, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36710420

RESUMEN

This study provides insight into circumstances that facilitate or hamper living at home with advanced dementia until the end of life. Interviews were held with 11 bereaved family caregivers, two general practitioners, and nine case managers, related to a total of 12 persons with advanced dementia who had recently died. Persons with dementia who lived at home until the end of life often had family caregivers that received timely support from professionals and their social network. In the cases where the person with dementia could not live at home until the end of life, safety issues, severely challenging behavior, and high care dependency of the person with dementia played key roles. Case management and a continuous process of advance care planning will improve the chance that the end-of-life setting is in accordance with the key values and needs of both the person with dementia and family caregivers.


Asunto(s)
Gestores de Casos , Médicos Generales , Cuidado Terminal , Humanos , Cuidadores , Estudios Retrospectivos , Investigación Cualitativa , Muerte
8.
J Prim Care Community Health ; 13: 21501319221090084, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35400215

RESUMEN

OBJECTIVE: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background. METHODS: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach's α. The known group validity was determined by comparing mean scores between subgroups. RESULTS: Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not. CONCLUSIONS: The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background. PRACTICE IMPLICATIONS: The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups.


Asunto(s)
Demencia , Emigrantes e Inmigrantes , Cuidadores , Etnicidad , Humanos , Lenguaje , Marruecos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Turquía
9.
Front Public Health ; 10: 653174, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35392479

RESUMEN

Background: Advance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP. Methods: Electronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008-2018). Results: ACP was recorded as such as 22 (95% CI, 20-23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31-2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15-0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58-2.69) or frail (HR 1.40, 95% CI, 1.13-1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation. Conclusion: ACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Medicina General , Comunicación , Demencia/diagnóstico , Registros Electrónicos de Salud , Humanos
10.
Gerontology ; 68(4): 442-452, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34261067

RESUMEN

INTRODUCTION: This study aims to provide insight into the prevalence of health problems and the frequency of general practitioner (GP) contacts in cohabiting partners of persons with dementia, during the year prior to the dementia diagnosis and up to 3 years after the diagnosis. METHODS: Partners of persons with dementia and a matched control group of partners of persons without dementia were identified in the routinely recorded electronic health records of 451 Dutch general practices in 2008-2015. These data were used to examine the prevalence of the partners' health problems. Differences between these partners and comparison partners in the prevalence of 16 groups of health problems (diagnostic chapters) and in the frequency of GP contacts were examined using generalized estimating equation models. RESULTS: 1,711 partners of persons with dementia and 6,201 comparison partners were included in the analyses. Social problems, more specifically problems related to the illness and/or the loss of the partner, were significantly more prevalent in partners than in comparison partners across the years (p < 0.01), as were musculoskeletal problems (p < 0.01). Respiratory and psychological problems increased over time in partners and remained stable in comparison partners. Across the years, partners contacted their GP more often than comparison partners (p < 0.01). DISCUSSION/CONCLUSION: Having a cohabiting partner with dementia has consequences for caregiver's physical and psychosocial health. The specific health problems found in this study and the increase in GP contacts might be relevant indicators of overburdening in partners of persons with dementia.


Asunto(s)
Demencia , Médicos Generales , Cuidadores/psicología , Demencia/psicología , Médicos Generales/psicología , Humanos , Prevalencia
11.
Health Lit Res Pract ; 5(3): e179-e193, 2021 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-34260318

RESUMEN

BACKGROUND: Studies have identified health literacy (HL) as an important determinant of asthma and chronic obstructive pulmonary disease (COPD) management. There are, however, limited data on patients' and health care professionals (HCPs') insights about the link between HL and management of asthma and COPD. OBJECTIVE: The aim of this study was to elicit patients' and HCPs' perspectives with respect to factors affecting HL in the context of asthma and COPD management. METHODS: A total of 16 semi-structured focus groups (10 in English and 6 in French) with patients with asthma or COPD (n = 93) and 45 interviews with HCPs, researchers, and policymakers were conducted between June 2015 and April 2017. Participants were asked to share their perspectives with respect to five predefined HL domains-accessing, understanding, evaluating, communicating, and using health-related information-in relation to disease self-management practices. Data were analyzed qualitatively, using a content analysis approach. KEY RESULTS: Most patients and HCPs reflected on factors hampering HL in relation to asthma and COPD management. Thoughts such as "not having enough time during medical consultations," "not receiving consistent messages from different health care professionals," and "language or cultural differences" were frequently mentioned by both patients and HCPs. CONCLUSIONS: We identified multiple factors affecting communication between patients and HCPs as it relates to the self-management of their disease. These included inconsistent messages from different providers, limited consultation time, use of technical language, failure to account for cultural differences, and reduced health literacy, especially as it related to written communication. Future interventions that aim to enhance HL skills in the context of asthma and COPD self-management should consider these issues. [HLRP: Health Literacy Research and Practice. 2021;5(3):e179-e193.] Plain Language Summary: The current study advances the health literacy (HL) knowledge base by adding patients' and health care professionals' valuable insights on factors that hamper or facilitate HL in relation to asthma and chronic obstructive pulmonary disease (COPD) management. An important insight from this study is that receiving conflicting information from different health care professional's hampers HL in patients with asthma and/or COPD.


Asunto(s)
Asma , Alfabetización en Salud , Enfermedad Pulmonar Obstructiva Crónica , Automanejo , Asma/terapia , Personal de Salud , Humanos , Enfermedad Pulmonar Obstructiva Crónica/terapia
12.
BMC Geriatr ; 21(1): 284, 2021 04 29.
Artículo en Inglés | MEDLINE | ID: mdl-33926385

RESUMEN

BACKGROUND: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. METHODS: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. RESULTS: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach's alpha: 0.94). The CFA indicated that the factor 'Self-perceived Pressure from Informal Care' explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). CONCLUSIONS: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.


Asunto(s)
Cuidadores , Emigrantes e Inmigrantes , Análisis Factorial , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Traducciones
13.
BMC Geriatr ; 21(1): 195, 2021 03 20.
Artículo en Inglés | MEDLINE | ID: mdl-33743599

RESUMEN

BACKGROUND: Dementia is a progressive disease that affects people's everyday functioning, including the ability to express values, needs and wishes, which can be considered key elements of self-direction. For the purpose of this review, self-direction refers to the organization and/or coordination of your own life, including professional and other care, with the objective of having what you perceive to be a good life. The aim of this systematic review was to assess and describe interventions that aim to improve self-direction of people with dementia. METHODS: A systematic search was conducted in PubMed, Embase, CINAHL, PsycInfo and the Cochrane Library. Empirical studies up to April 2020 were included that used qualitative and/or quantitative methods and reported on interventions for people with dementia aimed at improving self-direction. Stepwise study selection and the assessment of methodological quality were conducted independently by two authors. Data on study and intervention characteristics, outcomes related to self-direction and well-being of people with dementia and factors influencing the feasibility were extracted systematically and described narratively. RESULTS: Ten studies were identified describing a total of nine interventions. Interventions varied in terms of goals, content, target population and duration. Overall, interventions consisted of multiple components focusing on identifying "Who am I?" (beliefs, strengths, values, goals), identifying "What is important to me?" (meaningful activities and goal setting) and/or communicating about preferences with professionals and/or caregivers. The review provides indications that people with dementia may benefit from the interventions included. Overall, positive effects were found in studies on outcomes related to self-direction and wellbeing. However, outcomes measured using quantitative methods showed inconsistent effects between the studies. CONCLUSIONS: Although the methodological quality of all the studies included was 'good' or at least 'fair', the evidence base of interventions aiming to improve self-direction is still limited due to the low number of studies, the low number of participants and the frequent use of and their authors' own non-standardized measures. Nevertheless, the review points towards positive effects on self-direction and well-being. Identifying individual beliefs, strengths, values, goals and meaningful activities can be essential components of these interventions, as well as communication about the desired care and support.


Asunto(s)
Cuidadores , Demencia , Demencia/terapia , Necesidades y Demandas de Servicios de Salud , Humanos
14.
J Gerontol B Psychol Sci Soc Sci ; 76(6): 1186-1194, 2021 06 14.
Artículo en Inglés | MEDLINE | ID: mdl-33249493

RESUMEN

OBJECTIVES: To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. METHODS: Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. RESULTS: About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). DISCUSSION: Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health.


Asunto(s)
Cuidadores/psicología , Demencia/enfermería , Composición Familiar , Relaciones Familiares , Institucionalización/estadística & datos numéricos , Adaptación Psicológica , Anciano , Demencia/psicología , Femenino , Humanos , Masculino , Países Bajos , Autoeficacia , Apoyo Social
15.
Patient Educ Couns ; 104(7): 1726-1735, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33279344

RESUMEN

OBJECTIVE: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. METHODS: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. RESULTS: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. CONCLUSION: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. PRACTICE IMPLICATIONS: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care.


Asunto(s)
Demencia , Emigrantes e Inmigrantes , Cuidadores , Demencia/terapia , Humanos , Grupo Paritario , Calidad de Vida
16.
Patient Educ Couns ; 104(5): 1168-1175, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33143906

RESUMEN

OBJECTIVE: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL. METHODS: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options. RESULTS: At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05). CONCLUSION: Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term. PRACTICE IMPLICATIONS: The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds.


Asunto(s)
Demencia , Emigrantes e Inmigrantes , Cuidadores , Humanos , Salud Mental , Calidad de Vida
17.
BMC Fam Pract ; 20(1): 179, 2019 12 27.
Artículo en Inglés | MEDLINE | ID: mdl-31881942

RESUMEN

BACKGROUND: There is broad consensus that countries need to develop and implement person-centred integrated care to better meet the needs of their growing populations with multimorbidity. To develop appropriate care, it is essential to know the needs for care and support among these populations. For this purpose, we examined whether subgroups of people with multimorbidity could be distinguished based on their needs, and profiled these subgroups according to medical complexity and the availability of personal resources. METHODS: Persons diagnosed with two or more somatic chronic diseases (N = 613) were selected from 38 general practices throughout the Netherlands. We conducted a cluster analysis of their scores on the RAND-36 questionnaire of health-related quality of life (QoL), to gain insight in their needs for care and support. Differences in demographics, medical characteristics and personal resources between the identified clusters were tested using analysis of variance and chi-square tests. RESULTS: The cluster analysis revealed three subgroups: 1. a group with a relatively good QoL (48% of the sample), 2. a group with a poor physical QoL (28%), and 3. a group with a poor QoL in all domains assessed by the RAND-36 (24%). The group with a relatively good QoL had more favourable medical characteristics than the other groups, i.e., less chronic diseases, shorter illness duration, more stable course of illness, better controllable conditions, less polypharmacy. The group with a poor QoL in all domains could rely on less personal resources (education, income, social support, health literacy, self-management capabilities) than the other groups. CONCLUSIONS: Different subgroups of people with multimorbidity can be distinguished based on their needs for care and support. These needs are not only determined by demographic and medical characteristics, but also by the personal resources people have available to manage their health and care. Patient profiles combining medical complexity and personal resources could guide the development of integrated care for specific target groups of persons with multimorbidity.


Asunto(s)
Necesidades y Demandas de Servicios de Salud , Multimorbilidad , Anciano , Enfermedad Crónica/epidemiología , Enfermedad Crónica/terapia , Femenino , Estado de Salud , Humanos , Masculino , Evaluación de Necesidades , Países Bajos/epidemiología , Calidad de Vida , Autoeficacia , Encuestas y Cuestionarios
18.
BMC Public Health ; 18(1): 1414, 2018 Dec 29.
Artículo en Inglés | MEDLINE | ID: mdl-30594180

RESUMEN

BACKGROUND: In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. METHODS: Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. RESULTS: A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. CONCLUSIONS: Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs.


Asunto(s)
Alfabetización en Salud , Promoción de la Salud , Unión Europea , Humanos , Evaluación de Programas y Proyectos de Salud , Ensayos Clínicos Controlados Aleatorios como Asunto
19.
J Clin Epidemiol ; 102: 134-138, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-29793001

RESUMEN

Health literacy plays a crucial role in chronic disease management. To comprehensively manage chronic conditions on a daily basis, individuals must be able to assess, understand, evaluate, and use health information. Several key publications emphasize that health literacy is not merely a matter of individual skills but that it is highly dependent on the accessibility of health-care systems, the communication skills of health-care professionals, and the level of complexity of the health information. However, the literature indicates that health literacy is mainly framed and measured as an individual attribute in research. Focusing health literacy research solely on the individual, rather than also including the health-care context, limits our understanding of the type of actions that should be undertaken to facilitate a person's access to and understanding, evaluation and use of health information. This commentary highlights the importance of interpreting the concept of health literacy as a dynamic construct that emerges from the interaction between patients/citizens and health-care systems, organizations, and professionals. This approach has the potential to fill a gap in our understanding of the link between health literacy and chronic disease management. Such an understanding would facilitate the development of comprehensive health literacy measurement instruments and interventions to enhance health literacy.


Asunto(s)
Enfermedad Crónica , Manejo de la Enfermedad , Alfabetización en Salud , Atención a la Salud , Accesibilidad a los Servicios de Salud , Humanos
20.
Health Policy ; 122(1): 36-43, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-29129270

RESUMEN

INTRODUCTION: This paper aims to support the implementation of patient-centered care for people with multimorbidity in Europe, by providing insight into ways in which patient-centeredness is currently shaped in integrated care programs for people with multimorbidity in European countries. METHODS: In 2014, expert organizations in 31 European countries identified 200 integrated care practices ('programs') in 25 countries of which 123 were included in our study. Managers of 112 programs from 24 countries completed a questionnaire about characteristics and results of the program, including questions on elements of patient-centeredness. Eight programs that were considered especially innovative or promising were analyzed in depth. RESULTS: Programs used various methodologies to involve people with multimorbidity in decision-making, such as motivational interviewing and narrative counseling techniques. In 79 programs individual care plans were developed together with patients. Few programs had already been systematically evaluated, but in one program it was shown that working with individual care plans based on patients' goals and resources resulted in increased patient satisfaction with care. Various barriers to deliver patient-centered care were reported, including inadequate knowledge and skills of both patients and professionals. CONCLUSION: In many European countries innovative approaches are applied to increase patient-centeredness of care for people with multimorbidity. To assess their potential benefits and conditions for implementation, thorough process and outcome evaluations of programs are urgently needed.


Asunto(s)
Enfermedad Crónica , Prestación Integrada de Atención de Salud , Multimorbilidad , Atención Dirigida al Paciente/métodos , Europa (Continente) , Humanos , Entrevista Motivacional , Evaluación de Resultado en la Atención de Salud , Encuestas y Cuestionarios
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