ABSTRACT
BACKGROUND AND PURPOSE: Data on long-term survival and recurrence after stroke are lacking. We investigated time trends in ischemic stroke case-fatality and recurrence rates over 20-years stratified by etiological subtype according to the Trial of ORG 10172 in Acute Stroke Treatment classification within a population-based stroke register in Germany. METHODS: Data was collected within the Erlangen Stroke Project, a prospective, population-based stroke register covering a source population of 105 164 inhabitants (2010). Case fatality and recurrence rates for 3 months, 1 year, and 5 years were estimated with Kaplan-Meier estimates. Sex-specific time trends for case-fatality and recurrence rates were estimated with Cox regression. We adjusted for age, sex, and year of event and stratified for etiological subtypes. A sensitivity analysis with competing risk analysis for time trends in recurrence were performed. RESULTS: Between 1996 and 2015, 3346 patients with first ischemic stroke were included; age-standardized incidence per 100 000 was 75.8 in women and 131.6 in men (2015). Overall, 5-year survival probabilities were 50.4% (95% CI, 47.9-53.1) in women and 59.2% (95% CI, 56.4-62.0) in men; 5-year survival was highest in patients with first stroke due to small-artery occlusion (women, 71.8% [95% CI, 67.1-76.9]; men, 75.9% [95% CI, 71.3-80.9]) and lowest in cardioembolic stroke (women, 35.7% [95% CI, 31.0-41.1]; men, 47.8% [95% CI, 42.2-54.3]). Five-year recurrence rates were 20.1% (95% CI, 17.5-22.6) in women and 20.1% (95% CI, 17.5-22.7) in men; 5-year recurrence rate was lowest in women in stroke due to small artery occlusion 16.0% (95% CI, 11.7-20.1) and in men in large-artery atherosclerosis 16.6% (95% CI, 8.7-23.9); highest risk of recurrence was observed in undefined strokes (women, 22.3% [95% CI, 17.8-26.6]; men, 21.4% [95% CI, 16.7-25.9]). Cox regression revealed improvements in case-fatality rates over time with differences in stroke causes. No time trends in recurrence rates were observed. CONCLUSIONS: Long-term survival and recurrence varied substantially by first stroke cause. Survival probabilities improved over the past 2 decades; no major trends in stroke recurrence rates were observed.
Subject(s)
Brain Ischemia/epidemiology , Brain Ischemia/mortality , Stroke/epidemiology , Stroke/mortality , Adult , Age Distribution , Aged , Aged, 80 and over , Embolism/complications , Female , Germany/epidemiology , Humans , Incidence , Kaplan-Meier Estimate , Male , Middle Aged , Prospective Studies , Recurrence , Registries , Risk Assessment , Sex Distribution , Sex Factors , Stroke/etiology , Survival AnalysisABSTRACT
BACKGROUND: Dementia is an age-specific disease with increasing care needs over the course of the disease. Care is predominantly conducted by caregivers. Caregiver burden is a core criterion for the evaluation of the care situation. The aims of this examination are to identify predictors of caregiver burden and to analyze the course of the caregiver burden over a 12 months period. METHODS: The Bavarian Dementia Survey (BayDem) is a supra-regional, longitudinal study carried out at 3 different sites in Bavaria, Germany. Participants were people with dementia (pwd) as defined by ICD-10 and their informal caregivers. Data was collected by standardized face-to-face interviews in cooperation with local actors. For statistical analysis, a multiple regression as well as a mixed ANOVA (Analysis of Variance) and repeated measures ANOVAs were used. RESULTS: In this analysis, 295 pwd and 276 caregivers were studied. Key factors influencing caregiver burden were gender of the pwd, behavioral and psychological symptoms and a decline of everyday functioning of the pwd as well as gender of the informal caregivers, their relation to the pwd and if they live at the same household as the pwd. Analysis showed a significant main effect of time over the course of the caregiver burden. CONCLUSION: A permanent high caregiver burden can cause health problems for the caregivers. However, caregivers can be supported according to the specific factors of the caregiver burden. One approach in order to support caregivers could be a combination of pharmacological and non-pharmacological interventions for the treatment of disease-specific symptoms and an empowerment as well as the provision of support services for the caregivers. Furthermore, tailored services for specific target groups can be meaningful.
Subject(s)
Caregivers , Dementia , Cost of Illness , Dementia/nursing , Germany , Humans , Longitudinal Studies , Quality of Life , Surveys and QuestionnairesABSTRACT
BACKGROUND: The increasing prevalence of dementia raises challenges concerning the care of people with dementia (pwd). The care of pwd is mainly conducted by informal caregivers who are faced with several burdens; however, use of care services is generally low. The aim of this study was to identify predictors of the use of outpatient care services. METHODS: The Bavarian Dementia Survey (BayDem) is a multi-centre, longitudinal study that was conducted at 3 different sites in Bavaria, Germany. Participants were people with dementia (pwd) (according to ICD-10) and their informal caregivers. Data were collected by standardised face-to-face interviews using well-designed instruments in cooperation with local partners. Logistic regression analysis was carried out in order to identify predictors of the use of outpatient care services. RESULTS: In total, 364 pwd and 339 informal caregivers were included at the beginning of the study BayDem. The use of supportive care services was generally low. One-third of all participants used outpatient care services. In the logistic regression analysis, the following significant predictors for the use of outpatient care services 6 months after baseline were identified: severity of cognitive impairment of the pwd; use of outpatient care at the beginning of the study. CONCLUSION: The low use of outpatient care services is a well-known paradoxical phenomenon. Such services can help give relief to informal caregivers. In order to enhance the use of supportive outpatient care services, there should be more focus on innovative health service delivery models with a low access threshold barrier. Besides more public campaigns, more guidance for existing offers is needed.
Subject(s)
Ambulatory Care , Caregivers , Dementia , Ambulatory Care/standards , Dementia/nursing , Dementia/therapy , Germany , Humans , Longitudinal Studies , Surveys and QuestionnairesABSTRACT
BACKGROUND: Dementia is usually a life-limiting disease. However, evidence-based guidelines for palliative care for people with dementia (PwD) are currently lacking. One reason for this is the dearth of reliable empirical data on PwD at the end of life. The aim of this study is to describe the symptom burden, causes of death, places of death and the use of various health services for PwD at the end of life. METHODS: The Bavarian Dementia Survey (BayDem) was a multi-center, longitudinal study at 3 different sites in Bavaria, Germany (Dachau, Kronach, Erlangen). Participants were PwD defined by ICD-10 and their informal caregivers. Data were collected in standardized face-to-face interviews in cooperation with local actors. In order to obtain comparable groups, deceased and non-deceased PwD were matched using 1:1 propensity score matching. For the statistical analyses, McNemar tests as well as paired t-tests were used. RESULTS: In this analysis, 58 deceased and 58 non-deceased PwD were studied (n=116). In most cases, PwD died at home (36.2%), in hospital (25.9%) or in a nursing home (19.0%), but no one in palliative care. The most common causes of death were respiratory (13.8%) and cardiovascular complications (12.1%) as well as stroke (12.1%). PwD at the end of life showed more pronounced physical comorbidities than the other PwD (Charlson-Index: M=2.75 vs. M=1.80; p=0.030, Cohen's d=0.425) and were therefore admitted to hospital (46.6 vs. 12.1%, p<0.001, OR=6.250) or emergency departments (22.4 vs. 3.4%, p=0.007, OR=6.500) more frequently. Behavioral and psychological symptoms were very pronounced (NPI Score: M=31.67 vs. M=24.77, p=0.118, Cohen's d=0.303). Nevertheless, the utilization of outpatient health services was low. CONCLUSION: The results underline the need to develop evidence-based guidelines to provide palliative care specifically adapted to the needs of PwD at the end of life. In this context, the high incidence of behavioral and psychological symptoms should be taken into account, as should the high incidence of physical comorbidities. Considering the frequent hospital admissions, special attention should also be paid to the development of recommendations for the inpatient sector (acute hospital and palliative care unit).
Subject(s)
Cause of Death , Dementia , Facilities and Services Utilization , Terminal Care , Caregivers , Cost of Illness , Dementia/mortality , Dementia/therapy , Germany/epidemiology , Humans , Longitudinal Studies , Quality of Life , Surveys and QuestionnairesABSTRACT
BACKGROUND: In many cases, people with dementia (PWD) receive their first diagnosis at an advanced stage of the disease. A timely diagnosis, however, is crucial for the utilization of therapies and support services for PWD and their caregivers. So far, only a few international studies have analysed predictors of the time lapse between the first perceived symptoms and diagnosis. The aim of this study was to assess the time span from the first symptoms of dementia until the first dementia diagnosis and to identify predictors of a timely diagnosis. METHODS: The Bavarian Dementia Survey (BayDem) is a multi-centre, longitudinal study at 3 different sites in Bavaria, Germany. Participants were PWD as defined by ICD-10 and their informal caregivers. Data was collected by standardized face-to-face interviews in cooperation with local actors. For the analysis of potential sociodemographic predictors of a timely diagnosis within 9 months after the perception of the first symptoms, binary logistic regressions were used. RESULTS: The median length from the perception of the first symptoms until diagnosis was 16 months. Predictors of a timely diagnosis for male PWD were age at the time of the first perceived symptoms and education. There was no association between a timely diagnosis and the place of residence or living situation of the PWD. CONCLUSIONS: Diagnosis of dementia is often made with a huge delay. Therefore, it is necessary to enhance structured access routes to a timely diagnosis in primary care.
