Caregiver burden and emotional problems in partners of stroke patients at two months and one year post-stroke: Determinants and prediction.

OBJECTIVES: (a) To determine levels of and factors explaining partners' burden, anxiety and depressive symptoms at two months post-stroke, (b) to predict partners' burden, anxiety and depressive symptoms at one year post-stroke based on patient and partner characteristics available at two months post-stroke. METHODS: Prospective cohort study. Partners of stroke patients (N=183) were included. Main outcome measures were the Caregiver Strain Index and the Hospital Anxiety and Depression Scale. RESULTS: Many partners experienced high burden, anxiety and depressive symptoms. At two months post-stroke, these outcomes were associated with the partner variables: age, relationship satisfaction, pro-active coping, self-efficacy, everyday social support, burden, anxiety and depressive symptoms; and the patient variables: stroke severity and depressive symptoms. Partner outcomes at one year post-stroke were mainly predicted by the level of these outcomes at two months post-stroke. CONCLUSIONS: Partner outcomes at two months post-stroke predict to a large degree partner outcomes at one year post-stroke. PRACTICE IMPLICATIONS: Measuring partners' burden and anxiety and depressive symptoms in the post-acute phase is recommended to trace partners at risk of long-term burden and emotional problems.

Course of social support and relationships between social support and patients' depressive symptoms in the first 3 years post-stroke.

OBJECTIVE: To describe the course of social support (everyday support, support in problem situations and esteem support) from initial inpatient rehabilitation until 3 years post-stroke and to examine the cross-sectional and longitudinal relationships of social support with depressive symptoms. DESIGN: Prospective cohort study. SUBJECTS: A total of 249 stroke patients. METHODS: Depressive symptoms were measured with the Center of Epidemiologic Studies Depression Scale. Perceived social support was assessed with the Social Support List-Interaction. Pearson correlations and multilevel analysis were performed. RESULTS: More than one-third of participants had depressive symptoms. Social support and its 3 subtypes declined significantly over time. Divergent relationships were found between subtypes of social support and depressive symptoms. Everyday support and esteem support had negative associations with depressive symptoms, whereas support in problem situations had a positive association. Social support in problem situations was a predictor of depressive symptoms over time. No effect-modification by participants with physical or cognitive limitations was found. CONCLUSION: Stroke survivors experience a decline in social support over time. Various subtypes of support show distinct relationships with depressive symptoms. Healthcare professionals should focus on the various subtypes of support when supporting patients to improve and maintain an adequate social support network.

Quality of life of adult men with Duchenne muscular dystrophy in the Netherlands: implications for care.

OBJECTIVE: To assess quality of life of adults with Duchenne muscular dystrophy in the Netherlands and to identify domains and major problems influencing quality of life. DESIGN: Cross-sectional. SUBJECTS: Seventy-nine men aged ≥ 20 years with Duchenne muscular dystrophy. METHODS: The Medical Outcome Study Short Form-36 (SF-36), World Health Organization Quality of Life - BREF (WHOQOL-BREF) and an interview were used to assess quality of life and problems. RESULTS: Compared with Dutch general population reference values, the SF-36 domains scores were lower on all domains except mental health and role limitations due to emotional problems. On the WHOQOL-BREF the social relationships domain score was lower. Main problems were intimate relationships, work, leisure, transport and meaningfulness of life. Seventy-three percent stated overall quality of life as "(very) good". The SF-36 domains mental health (rs 0.53, p < 0.001) and vitality (rs 0.49, p < 0.001) had the strongest associations with overall quality of life. CONCLUSION: Adult men with Duchenne muscular dystrophy assess their health status as low in the physical, but not in the mental, domains. Experienced problems are mainly in the area of participation. They are generally satisfied with their overall quality of life.

Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy.

PURPOSE: To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden. METHODS: In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored. RESULTS: Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%-36% of variance. Living situation was not associated with experienced burden. CONCLUSIONS: Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood.

Course of social support and relationships between social support and life satisfaction in spouses of patients with stroke in the chronic phase.

OBJECTIVE: To describe the course of social support in spouses of patients with stroke, and to examine direct and indirect relationships between social support and life satisfaction over time. METHODS: Prospective cohort study (N=180) with measurements at 2 months after discharge from inpatient rehabilitation, 1 year, and 3 years after stroke. Social support was assessed using the Social Support List-12, Life satisfaction with the Life Satisfaction Questionnaire (LiSat-9) and Caregiver strain with the Caregiver Strain Index. Random coefficient analyses was used. RESULTS: Total social support and the 3 subtypes of social support decreased significantly over time. In all models, caregiver strain was associated with lower life satisfaction and social support was associated with higher life satisfaction, but there were no interaction effects between caregiver strain and social support on life satisfaction. CONCLUSION: Spouses of patients with stroke experienced a decline of social support over time. Social support was positively associated with life satisfaction, regardless of the amount of caregiver strain experienced by the spouses. PRACTICE IMPLICATIONS: It is important to discuss with caregivers of stroke patients the importance of maintaining their own social contacts and to facilitate this by arranging support if appropriate.

Is there equity in long-term healthcare utilization after traumatic brain injury?

OBJECTIVE: To quantify the long-term use of various types of healthcare services in patients with traumatic brain injury and to estimate the relative contribution of predisposing characteristics, enabling factors and health-related needs to determine whether there is equity in healthcare utilization. DESIGN: Cross-sectional study. PATIENTS: Seventy-nine non-institutionalized moderate to severe patients with traumatic brain injury (age range 16-67 years). METHODS: Healthcare use was measured at 3-5 years post-injury. The relative contribution of predisposing characteristics, enabling factors, and health-related needs to the utilization of various types of care was analysed using logistic regression to determine whether there was equity in healthcare utilization. RESULTS: At least one healthcare service was used by 68% of the patients. Health-related needs explained most of the utilization. However, predisposing characteristics were also related to the use of other medical care and supportive care. Patients with a high internal locus of control were more likely to be users of supportive care, and patients with a high locus of control with the physician were more likely to visit medical specialists. CONCLUSION: The results suggest that most of our patients who needed care, received care. However, inequity could not be ruled out completely as predisposing characteristics also contributed to some types of healthcare utilization.

Impact of preexisting depression on length of stay and discharge destination among patients hospitalized for acute stroke: linked register-based study.

BACKGROUND AND PURPOSE: There exists limited knowledge regarding the relation between depression and healthcare utilization in stroke patients. The objective of this register-based study was to examine the impact of having preexisting depression at the time of hospital admission for acute stroke on length of hospital stay and discharge destination. METHODS: Data from a general-practice database were linked to those of a hospital database to identify patients hospitalized for stroke and were used to categorize these patients into 3 groups based on preexisting mental health (MH) status at admission, ie, those with preexisting depression, those with another preexisting MH condition, and those without any preexisting MH condition. Multilevel analyses controlling for several potentially important covariates were performed to estimate the associations under study. RESULTS: Both patients with preexisting depression (n=41) and those with another preexisting MH condition (n=62) did not differ significantly from patients without any preexisting MH condition (n=211) regarding length of hospital stay for acute stroke. Among patients who survived hospitalization, those with preexisting depression had significantly higher odds of being discharged to an institution instead of their home than did patients without any preexisting MH condition. Having another preexisting MH condition had no significant effect on discharge destination. CONCLUSIONS: Having preexisting depression at admission seems to be a relevant factor in determining discharge to institutional care after acute stroke hospitalization. Further research is needed to determine the mechanism(s) through which preexisting depression decreases the chances of being discharged to home.

Cerebrovascular risk factors and subsequent depression in older general practice patients.

BACKGROUND: This general practice-based case-control study tested the association between cerebrovascular risk factors (CVRFs) and the development of later-life depression by focusing on the impact of exposure duration to CVRFs and the modifying influence of age at depression onset. METHODS: Cases were 286 patients aged > or = 50 years with a first diagnosis of depression at age > or = 50 years. Nondepressed controls (N=832) were individually matched for age, gender and practice. CVRF diagnoses (hypertension, diabetes mellitus, cardiovascular conditions) prior to depression were determined. Analyses controlled for education, somatic and nondepressive psychiatric disease. RESULTS: No CVRF variable examined was significantly associated with subsequent depression in the total sample. An unexpected impact of age at onset of depression was observed: the odds ratio associated with having any CVRF was smaller for patients with age at onset > or = 70 years than for patients with onset between ages 50-59 years (p=.002) and 60-69 years (p=.067). Subsequent analyses excluding patients with onset at age > or = 70 years revealed that CVRF variables, including long-term exposure to CVRFs, significantly increased the odds of subsequent depression with onset between ages 50 and 69 years. LIMITATIONS: Reliance on GPs' records of morbidity may have resulted in bias towards underestimation in patients with depression onset at age > or = 70 years. CONCLUSIONS: Our findings suggest that CVRFs play a relevant role in the development of depression with onset between ages 50 and 69 years, but no evidence was found that they contribute to the occurrence of depression with onset at age > or = 70 years. Replication is warranted to exclude the possibility of bias.

Comorbidity was associated with neurologic and psychiatric diseases: a general practice-based controlled study.

BACKGROUND AND OBJECTIVE: To comprehensively examine comorbidity in unselected cohorts of patients with depression, stroke, multiple sclerosis (MS), Parkinson's disease/parkinsonism (PD/PKM), dementia, migraine, and epilepsy. METHODS: This cross-sectional study used morbidity data recorded by Dutch general practitioners. Index disease cohort sizes ranged from 241 patients with MS to 6,641 patients with lifetime depression. Thirty somatic and seven psychiatric disease categories were examined to determine whether they were comorbid with the index diseases by performing comparisons with age- and gender-matched control cohorts. Identified comorbidities were classified as either "possible" or "highly probable" comorbidity. RESULTS: An extensive range of 26 disease categories was found to be comorbid with lifetime depression. The comorbidity profile of stroke was also wide, including 21 disease categories. The comorbidity patterns of migraine and epilepsy comprised each 11 disease categories. Those concerning MS, PD/PKM, and dementia included a small number of disease categories. CONCLUSION: This study provides comprehensive knowledge of the occurrence of somatic and psychiatric comorbidity in general populations of patients with depression, stroke, MS, PD/PKM, dementia, migraine, and epilepsy. The implications of the findings for clinical practice and research are discussed.

Future costs of stroke in the Netherlands: the impact of stroke services.

OBJECTIVES: In the next decades, the number of stroke patients is expected to increase. Furthermore, organizational changes, such as stroke services, are expected to be implemented on a large scale. The purpose of this study is to estimate the future healthcare costs by taking into account the expected increase of stroke patients and a nationwide implementation of stroke services. METHODS: By means of a dynamic multistate life table, the total number of stroke patients can be projected. The model calculates the annual number of patients by age and gender. The total healthcare costs are calculated by multiplying the average healthcare costs specified by age, gender, and healthcare sector with the total number of stroke patients specified by age and gender. RESULTS: In the year 2000, the healthcare costs for stroke amounted to euro 1.62 billion. This amount is approximately 4.4 percent of the total national healthcare budget. Projections of the total costs of stroke based on current practice result in an increase of 28 percent (euro 2.08 billion) in the year 2020. A nationwide implementation of stroke services in 2020 would result in a substantial reduction of the costs of stroke (euro 1.81 billion: 13 percent cost reduction) compared with the regular care scenario. CONCLUSIONS: A nationwide implementation of stroke services is a strong policy tool for cost containment of health care in an aging population like that in the Netherlands. Policy makers should optimize the organization of stroke care.

Comorbidity in patients with diabetes mellitus: impact on medical health care utilization.

BACKGROUND: Comorbidity has been shown to intensify health care utilization and to increase medical care costs for patients with diabetes. However, most studies have been focused on one health care service, mainly hospital care, or limited their analyses to one additional comorbid disease, or the data were based on self-reported questionnaires instead of health care registration data. The purpose of this study is to estimate the effects a broad spectrum of of comorbidities on the type and volume of medical health care utilization of patients with diabetes. METHODS: By linking general practice and hospital based registrations in the Netherlands, data on comorbidity and health care utilization of patients with diabetes (n = 7,499) were obtained. Comorbidity was defined as diabetes-related comorbiiabetes-related comorbidity. Multilevel regression analyses were applied to estimate the effects of comorbidity on health care utilization. RESULTS: Our results show that both diabetes-related and non diabetes-related comorbidity increase the use of medical care substantially in patients with diabetes. Having both diabeterelated and non diabetes-related comorbidity incrases the demand for health care even more. Differences in health care utilization patterns were observed between the comorbidities. CONCLUSION: Non diabetes-related comorbidity increases the health care demand as much as diabetes-related comorbidity. Current single-disease approach of integrated diabetes care should be extended with additional care modules, which must be generic and include multiple diseases in order to meet the complex health care demands of patients with diabetes in the future.

Hierarchy levels, sum score, and worsening of disability are related to depressive symptoms in elderly men from three European countries.

OBJECTIVES: The objectives were to investigate the predictive value of hierarchy levels and sum score of disability and change in disability on depressive symptoms. METHOD: Longitudinal data of 723 men age 70 and older from the Finland, Italy, and the Netherlands Elderly Study were collected in 1990 and 1995. Self-reported disability was based on three disability domains (instrumental activities, mobility, and basic activities) and depressive symptoms on the Zung questionnaire. RESULTS: Severity levels of disability were positively associated with depressive symptoms. Men with no disability scored 5 to 17 points lower (p < .01) on depressive symptoms than did those with disability in all domains. Among men with mild disability, those who had worsening of disability status in the preceding 5 years scored 5 points higher (p = .004) on depressive symptoms than did men who improved. DISCUSSION: Hierarchic severity levels, sum score of disability, and preceding changes in disability status are risk factors for depressive symptoms.

Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods.

This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.

The contribution of self-rated health and depressive symptoms to disability severity as a predictor of 10-year mortality in European elderly men.

OBJECTIVES: To investigate the effect of disability severity and the contribution of self-rated health and depressive symptoms to 10-year mortality. METHODS: Longitudinal data were collected from 1141 men aged 70 to 89 years from the Finland, Italy, and the Netherlands Elderly Study from 1990 to 2000. Disability severity was classified into 4 categories: no disability, instrumental activities, mobility, and basic activities of daily living. Self-rated health and depressive symptoms were classified into 2 and 3 categories, respectively. Multivariate Cox proportional hazard models were used to calculate mortality risks. RESULTS: Men with severe disability had a risk of mortality that was more than 2-fold higher (hazard ratio [HR]=2.41; 95% confidence interval [CI]=1.84, 3.16) than that of men without disability. Men who had severe disability and did not feel healthy had the highest mortality risk (HR = 3.30; 95% CI = 2.52, 4.33). This risk was lower at lower levels of disability and higher levels of self-rated health. The same trend was observed for depressive symptoms. CONCLUSIONS: For adequate prognoses on mortality or for developing intervention strategies, not only physical aspects of health but also other health outcomes should be taken into account.

Accuracy of diagnosing depression in primary care: the impact of chronic somatic and psychiatric co-morbidity.

BACKGROUND: Depression is highly co-morbid with both psychiatric and chronic somatic disease. These types of co-morbidity have been shown to exert opposite effects on underdiagnosis of depression by general practitioners (GPs). However, past research has not addressed their combined effect on underdiagnosis of depression. METHOD: Co-morbidity data on 191 depressed primary-care patients selected by a two-stage sampling procedure were analysed. Diagnoses of major depression and/or dysthymia in the last 12 months were assessed using a standardized psychiatric interview (CIDI) and compared with depression diagnoses registered by GPs in patient contacts during the same period. Presence of psychiatric and chronic somatic co-morbidity was determined using the CIDI and contact registration, respectively. RESULTS: Regression analysis showed a significant interaction effect between psychiatric and chronic somatic co-morbidity on GPs' diagnosis of depression, while taking into account the effects of sociodemographic variables, depression severity and number of GP contacts. Subsequent stratified analysis revealed that in patients without chronic somatic co-morbidity, a lower educational level, a less severe depression, and fewer GP contacts all significantly increased the likelihood of not being diagnosed as depressed. In contrast, in patients with chronic somatic co-morbidity, only having no psychiatric co-morbidity significantly decreased the likelihood of receiving a depression diagnosis. CONCLUSIONS: Our results indicate that the effects of psychiatric co-morbidity and other factors on underdiagnosis of depression by GPs differ between depressed patients with and without chronic somatic co-morbidity. Efforts to improve depression diagnosis by GPs seem to require different strategies for depressed patients with and without chronic somatic co-morbidity.

Duration and intensity of physical activity and disability among European elderly men.

PURPOSE: To investigate the relationship between duration and intensity of physical activity and disability 10 years later, and to investigate the possible effect of selective mortality. METHOD: Longitudinal data of 560 men aged 70?-?89 years, without disability at baseline from the Finland, Italy and The Netherlands Elderly (FINE) Study was used. Physical activity in 1990 was based on activities like walking, bicycling and gardening. Disability severity (three categories) in 1990 and 2000 was based on instrumental activities, mobility and basic activities of daily living. RESULTS: Men in the highest tertile of total physical activity had a lower risk of disability than men in the lowest tertile (odds ratio (OR) 0.46; 95% confidence interval (CI): 0.26-0.84). This was due to duration of physical activity (OR highest tertile 0.42; 95% CI: 0.23-0.78 compared to the lowest tertile). Intensity of physical activity was not associated with disability. Addition of deceased men as fourth category leaded to weaker associations between physical activity and disability (OR highest tertile 0.67; 95% CI: 0.44-1.02). CONCLUSIONS: Even in old age among relatively healthy men, a physically active lifestyle was inversely related to disability. To prevent disability duration of physical activity seems to be more important than intensity.

Modeling the future burden of stroke in The Netherlands: impact of aging, smoking, and hypertension.

BACKGROUND AND PURPOSE: In the near future, the number of stroke patients and their related healthcare costs are expected to rise. The purpose of this study was to estimate this expected increase in stroke patients in the Netherlands. We sought to determine what the future developments in the number of stroke patients due to demographic changes and trends in the prevalence of smoking and hypertension in terms of the prevalence, incidence, and potential years of life lost might be. METHODS: A dynamic, multistate life table was used, which combined demographic projections and existing stroke morbidity and mortality data. It projected future changes in the number of stroke patients in several scenarios for the Dutch population for the period 2000 to 2020. The model calculated the annual number of new patients by age and sex by using incidence rates, defined by age, sex, and major risk factors. The change in the annual number of stroke patients is the result of incident cases minus mortality numbers. RESULTS: Demographic changes in the population suggest an increase of 27% in number of stroke patients per 1000 in 2020 compared with 2000. Extrapolating past trends in the prevalence of smoking behavior, hypertension, and stroke incidence resulted in an increase of 4%. CONCLUSIONS: The number of stroke patients in the Netherlands will rise continuously until the year 2020. Our study demonstrates that a large part of this increase in the number of patients is an inevitable consequence of the aging of the population.

Psychological distress in couples dealing with colorectal cancer: gender and role differences and intracouple correspondence.

OBJECTIVES: This longitudinal study examined patterns of psychological distress in couples facing colorectal cancer within 6 months after surgery. In addition, correspondence in psychological distress was investigated between patients and their spouses, taking into account the gender of the patient. METHOD: The study had a longitudinal design, involving three assessment points; (T1) within 2 weeks after surgery, (T2) 3 months after baseline and (T3) 6 months after baseline. At T1, respondents were asked to indicate how they felt during the week prior to surgery. At T2 and T3, respondents reported their feelings during the preceding week. Psychological distress was measured using the 20-item Center for Epidemiologic Studies Depression Scale (CES-D) in 137 couples. RESULTS: Concerning the week prior to surgery, females reported more distress being a patient, whereas males reported more distress being a spouse. In comparison with a reference group, females as well as males, regardless of their role, showed increased levels of psychological distress prior to surgery. At 3 and 6 months following surgery, increased levels of distress continued to exist in females, whereas males' distress returned to normal levels. Neither within female-patient couples, nor within male-patient couples, were associations between patients' and spouses' distress found. CONCLUSION: We demonstrated a considerable impact of the cancer diagnosis on both female and male patients and their spouses before and 3 months after surgery. Six months after surgery, females, in particular, appear to be vulnerable to distress.

Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis.

OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment), subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score), and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years, reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy, which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden.

Impact of fatigue on health-related quality of life in rheumatoid arthritis.

OBJECTIVE: To multidimensionally assess fatigue in rheumatoid arthritis (RA) and to evaluate the impact of fatigue on health-related quality of life (HRQOL). METHODS: The study was conducted in 1999 among 490 RA patients with varying disease duration. Fatigue was measured with the Multidimensional Fatigue Inventory (MFI-20) and HRQOL with a validated Dutch version of the RAND 36-Item Health Survey. We evaluated the impact of fatigue on HRQOL by multiple linear regression analyses taking into account RA-related pain and depressive symptoms. RESULTS: Different aspects of fatigue selectively explained different dimensions of HRQOL. The MFI-20 was entered last to the linear regression models, resulting in an additional increase of explained variance of 1% (mental health) to 14% (vitality). CONCLUSION: The multidimensional portrayal of RA-related fatigue can be used to develop intervention strategies targeted to specific aspects of fatigue. Fatigue, supplementary to RA-related pain and depressive symptoms, appears to be a feasible and treatable target in the clinical management of RA to increase HRQOL.