Mortality in patients with rheumatoid arthritis: a 15-year prospective cohort study.

The aim of this study was to investigate (a) the mortality in a clinical cohort of patients with established rheumatoid arthritis in comparison with the general Dutch population over 15 years, (b) the trend in the mortality ratio during the study period, and (c) causes of death and compare these with the general population. In 1997, a sample of 1222 patients was randomly selected from the register of a large rheumatology outpatient clinic. Their mortality and primary causes of death between 1997 and 2012 were obtained from Statistics Netherlands. The standardized mortality ratio (SMR) for all-cause mortality and the number of life-years lost in the study period, adjusted for age, sex, and calendar year, were calculated. A linear poisson regression analysis was performed to evaluate change in all-cause SMR over time. Finally, the SMRs for cause-specific mortality were calculated. The mean age of the population at baseline was 60.4 (SD 15.4) years, and 72.6% of the patients were women. The estimated SMR (95% CI) for all-cause mortality was 1.54 (1.41, 1.67) with about one life-year lost over the study period. There was a trend to decreasing SMR (2% annually, p = .07). Mortality was higher compared with the general population for circulatory system diseases, respiratory system diseases, musculoskeletal system diseases, and digestive system diseases (p < .05). The observed mortality among patients with RA was 54% higher than in the general population after adjustment for age, sex and calendar year. More than one life-year was lost over 15 years, and the mortality tended to decrease over time. The mortality was higher for cardiovascular, respiratory, musculoskeletal and digestive diseases.

Association of Somatic Comorbidities and Comorbid Depression With Mortality in Patients With Rheumatoid Arthritis: A 14-Year Prospective Cohort Study.

OBJECTIVE: Patients with rheumatoid arthritis (RA) have a significantly increased risk of mortality compared with the general population. One of the most important predictors for mortality is somatic comorbidity. Moreover, studies have demonstrated that comorbid depression is associated with mortality. Which specific comorbidities are associated with mortality is less investigated. The purpose of this study was to investigate the association of a wide range of comorbidities with mortality in patients with RA. METHODS: Longitudinal data over a 14-year period were collected from 882 patients with RA. Data were assessed with questionnaires. The mortality status was obtained from the Statistics Netherlands for the period 1996-2011 for 99% of the patients. Somatic comorbidity was assessed in 1997, 1998, 1999, and 2008 and measured by a national population-based questionnaire including 20 chronic diseases. Comorbid depression was assessed in 1997, 1998, and 1999 and measured with the Center for Epidemiologic Studies Depression Scale. Cox regression was used to study the relationship between comorbidity and mortality. RESULTS: At baseline, 72% of the patients were women. The mean ± SD age was 59.3 ± 14.8 years, and the median (interquartile range) disease duration was 5.0 (2.0-14.0) years. A total of 345 patients died during the study period. Comorbidities that were associated with mortality were circulatory conditions (hazard ratio [HR] 1.60 [95% confidence interval (95% CI) 1.15-2.22]), respiratory conditions (HR 1.43 [95% CI 1.09-1.89]), cancer (HR 2.00 [95% CI 1.28-3.12]), and depression (HR 1.35 [95% CI 1.06-1.72]). CONCLUSION: Comorbid circulatory conditions, respiratory conditions, cancer, and depression are associated with mortality among patients with RA. Careful monitoring of these comorbidities during the course of the disease and adequate referral may improve health outcomes and chances of surviving.

Long-term physical functioning and its association with somatic comorbidity and comorbid depression in patients with established rheumatoid arthritis: a longitudinal study.

OBJECTIVE: To describe long-term physical functioning and its association with somatic comorbidity and comorbid depression in patients with established rheumatoid arthritis (RA). METHODS: Longitudinal data over a period of 11 years were collected from 882 patients with RA at study inclusion. Patient-reported outcomes were collected in 1997, 1998, 1999, 2002, and 2008. Physical functioning was measured with the Health Assessment Questionnaire and the physical component summary score of the Short Form 36 health survey. Somatic comorbidity was measured by a questionnaire including 12 chronic diseases. Comorbid depression was measured with the Center for Epidemiologic Studies Depression Scale. We distinguished 4 groups of patients based on comorbidity at baseline. RESULTS: Seventy-two percent of the patients at baseline were women. The mean ± SD age was 59.3 ± 14.8 years and the median disease duration was 5.0 years (interquartile range 2.0-14.0 years). For the total group of patients with RA, physical functioning improved over time. Patients with somatic comorbidity, comorbid depression, or both demonstrated worse physical functioning than patients without comorbidity at all data collection points. Both groups with comorbid depression had the lowest scores. Only patients with both somatic comorbidity and comorbid depression showed significantly less improvement in physical functioning over time. CONCLUSION: Both somatic comorbidity and comorbid depression were negatively associated with physical functioning during an 11-year followup period. Furthermore, their combination seems to be especially detrimental to physical functioning over time. These results emphasize the need to take somatic comorbidity and comorbid depression into account in the screening and treatment of patients with RA.

Utilization of health care by patients with multiple sclerosis is based on professional and patient-defined health needs.

OBJECTIVE: This cross-sectional study investigates healthcare utilization, and determines which predisposing, enabling, and health factors are associated with healthcare utilization among 121 patients with multiple sclerosis (MS). METHODS: Data on patient-related predisposing, enabling, and health factors were collected by means of written questionnaires and a home visit from a well-trained physiotherapist. RESULTS: Of the 121 patients with MS (mean age 43 years, mean score on the Expanded Disability Status Scale 3.5, disease duration 6 years), 16% were hospitalized in the previous year; 62% consulted their general practitioner, and 69% consulted their neurologist in the previous 6 months. Other medical specialists were consulted in the 6-month period by 50% of the study population. In a 4-week period preceding the home visit, 41% of the patients were treated by an allied healthcare professional. Multivariate logistic regression analyses showed that consulting the general practitioner, the neurologist, other medical specialists, and allied healthcare professionals, and the use of equipment/aids by MS patients is primarily related to their health, either as perceived by the patients themselves or defined by the professional. CONCLUSIONS: MS patients in the Netherlands make appropriate use of healthcare facilities, because their utilization can predominantly be explained by health-related factors, and not by predisposing or enabling factors.

Identification of risk factors related to perceived unmet demands in patients with chronic stroke.

PURPOSE: To investigate the prevalence of unmet demands concerning autonomy and participation and to identify risk factors related to these unmet demands in patients with chronic stroke. METHOD: A cross-sectional study of 147 patients three years after stroke. We assessed perceived unmet care demands in relation to problems of participation and autonomy measured by the Impact on Participation and Autonomy Questionnaire (IPAQ). Socio-demographic and health characteristics were analysed as potential risk factors for the prevalence of unmet demands, using multivariate regression analysis. RESULTS: A total of 33% of the patients perceived at least one unmet demand in one of the IPAQ subdomains. Risk factors significantly related to the presence of unmet demands were younger age, motor impairment, fatigue and depressive symptoms. Findings indicate that the model including these factors was fairly accurate in identifying patients having unmet demands and those not having unmet demands. CONCLUSIONS: Unmet care demands were present in a substantial proportion of the stroke patients. The risk factors identified are helpful for clinicians and health care providers to recognize patients who are at risk of perceiving unmet care demands and to optimize care to patients with chronic stroke.

[There are also suitable treatments during the chronic phase following a stroke]. / Ook de chronische fase na een beroerte kent behandelmogelijkheden.

In contrast to the chronic phase, for the acute and rehabilitation phases following a stroke it is sufficiently clear what care is adequate care. Most stroke patients no longer have contact with healthcare professionals in the chronic phase. In this phase, new psychosocial problems may develop. Long (3, 5, 12 and 29 years) post stroke, 4 patients (aged 38-67 years) presented at an outpatient rehabilitation clinic with new complaints: social problems, emotional changes and cognitive impairments. Their relatives (spouses and children) perceived a substantial burden. A short-term outpatient, multidisciplinary rehabilitation programme was offered to them. The International Classification of Functioning, Disability and Health model was used to evaluate the health problems in relation to the environmental and personal factors. Psycho-education, learning cognitive strategies, supporting the family, and starting new leisure activities were important parts of the rehabilitation programme to increase participation and quality of life. The chronic phase following a stroke is not a stable phase and in this phase, rehabilitation interventions can be helpful too and should therefore be offered.

Disparities in stroke preventive care in general practice did not explain socioeconomic disparities in stroke.

OBJECTIVE: To assess socioeconomic disparities in stroke incidence and in the quality of preventive care for stroke in the Netherlands. STUDY DESIGN AND SETTINGS: A total of 190,664 patients who registered in 96 general practices were followed up for 12 months. Data were collected on diagnoses, referrals, prescriptions, and diagnostic procedures. Hazard ratios (HR) were calculated to assess the association between educational level and stroke incidence. Multilevel logistic regression was used to assess socioeconomic disparities in the quality of preventive care for stroke precursors. RESULTS: Lower educational level was associated with higher incidence of stroke in men (HR=1.36, 95% CI=1.06-1.74) but not in women. Among both men and women, there were socioeconomic disparities in the prevalence of hypertension, hypercholesterolemia, diabetes, angina pectoris, heart failure, and peripheral artery disease. Lower educated hypercholesterolemia patients under medication were less likely to be prescribed statins (odds ratio=0.62, 95% CI=0.42-0.91). However, for other precursors of stroke, there were no major disparities in the quality of preventive care. CONCLUSION: There are socioeconomic disparities in stroke incidence among men but not among women. Socioeconomic differences in factors such as hypertension and diabetes are likely to contribute to stroke disparities. However, general practitioners (GPs) provide care of a similar quality to patients from different socioeconomic groups.

Disability and health-related quality of life among patients with rheumatoid arthritis: association with radiographic joint damage, disease activity, pain, and depressive symptoms.

OBJECTIVE: To study the associations between disability and health-related quality of life (HRQoL), respectively, and radiographic joint damage, disease activity, pain, and depressive symptoms among patients with rheumatoid arthritis (RA). METHODS: Data were collected through questionnaires and clinical examinations at baseline (1997) and at 2 years' follow-up among patients with RA (n = 307). Disability was measured with a validated Dutch questionnaire, derived from the Health Assessment Questionnaire (HAQ), and HRQoL with a validated Dutch version of the RAND-36, using physical (PCS) and mental (MCS) component summary scales. Multivariate linear regression analyses were performed to assess the relationship between disability or HRQoL and radiographic damage, disease activity, pain, and depressive symptoms. RESULTS: Pain, with respect to disability and PCS, and depressive symptoms, with respect to MCS, were more important predictors than radiographic damage and disease activity. CONCLUSIONS: Daily RA practice needs to be broadened by regular assessment of disease burden from the patients' perspectives. Patient-reported measures, such as disability or HRQoL, should be incorporated for monitoring health outcomes of individual patients and for initiating and evaluating therapy.

Socioeconomic status and stroke incidence in the US elderly: the role of risk factors in the EPESE study.

BACKGROUND AND PURPOSE: This study assesses the effect of socioeconomic status on stroke incidence in the elderly, and the contribution of risk factors to stroke disparities. METHODS: Data comprised a sample of 2812 men and women aged 65 years and over from the New Haven cohort of the Established Populations for the Epidemiologic Studies of the Elderly. Individuals provided baseline information on demographics, functioning, cardiovascular and psychosocial risk factors in 1982 and were followed for 12 years. Proportional hazard models were used to model survival from initial interview to first fatal or nonfatal stroke. RESULTS: Two hundred and seventy subjects developed incident stroke. At ages 65 to 74, lower socioeconomic status was associated with higher stroke incidence for both education (HR(lowest/highest)=2.07, 95% CI, 1.04 to 4.13) and income (HR(lowest/highest)=2.08, 95% CI, 1.01 to 4.27). Adjustment for race, diabetes, depression, social networks and functioning attenuated hazard ratios to a nonsignificant level, whereas other risk factors did not change associations significantly. Beyond age 75, however, stroke rates were higher among those with the highest education (HR(lowest/highest)=0.42, 95% CI, 0.22 to 0.79) and income (HR(lowest/highest)=0.43, 95% CI, 0.22 to 0.86), which remained largely unchanged after adjustment for risk factors. CONCLUSIONS: We observed substantial socioeconomic disparities in stroke at ages 65 to 74, whereas a crossover of the association occurred beyond age 75. Policies to improve social and economic resources at early old age, and interventions to improve diabetes management, depression, social networks and functioning in the disadvantaged elderly can contribute to reduce stroke disparities.

Life expectancy without chronic morbidity: trends in gender and socioeconomic disparities.

OBJECTIVE: Life expectancy without chronic morbidity, or morbidity-free life expectancy (MFLE), was calculated to measure changes in population health status between 1989 and 2000 on the basis of gender and socioeconomic status. METHODS: Sullivan's method was used to calculate morbidity-free life expectancy. Prevalence rates for chronic morbidity were derived from the Netherlands Continuous Health Interview Survey. Four socioeconomic groups were distinguished on the basis of educational level. RESULTS: Between 1989 and 2000, total life expectancy increased for males and females and for all socioeconomic groups. Morbidity-free life expectancy decreased significantly for males (from 54.7 years to 53.9 years) and females (from 55.3 years to 51.0 years). The gap between males and females in MFLE has reversed, from 0.6 years in favor of females in 1989 to 2.9 years in favor of males in 2000. The gap between the upper and lower classes seems to have narrowed (for males from 11 years to 8.5 years and for females from 4.7 years to 4.0 years). CONCLUSIONS: The results indicate that morbidity-free life expectancy is falling for males and females and in all socioeconomic groups. Part of this decrease could be attributed to earlier diagnosis of chronic diseases. A widening gap in MFLE was observed between males and females in favor of males. The gap between the upper and lower socioeconomic groups seems to be narrowing.

Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects.

BACKGROUND: We assessed the objective and subjective burden of caregiving for stroke patients and investigated which characteristics of the patient, the informal caregiver and the objective burden contribute most to subjective burden and to the condition of feeling substantially burdened. METHODS: We studied a sample of 151 stroke survivors and their primary informal caregivers. We collected data through patient and caregiver interviews 6 months after stroke. RESULTS: Both the level of subjective burden and the condition of feeling substantially burdened were associated with both caregiver's and patient's health-related quality of life, patient's age, and the number of caregiving tasks performed. CONCLUSIONS: These conditions can be used in clinical practice to identify potentially vulnerable caregivers in need of support and at risk of adverse health effects. Monitoring stroke survivors as well as their family caregivers at discharge may help to prevent or alleviate caregiver burden.

What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden.

OBJECTIVE: Prevailing measures of subjective caregiver burden either have no overall summary score or do not consider the relative importance caregivers attach to different dimensions of burden. Our aim was to assess which dimensions informal caregivers perceive as being important to their overall burden from care giving. DESIGN: Cross-sectional. SUBJECTS: Data were pooled from two Dutch samples of primary informal caregivers covering a wide range of chronic care-giving situations: caregivers for stroke survivors (n = 196) and caregivers for individuals with rheumatoid arthritis (RA) (n = 131). MAIN MEASURES: Subjective burden of care giving was assessed using the Caregiver Reaction Assessment (CRA) and the Self-Rated Burden scale (SRB). RESULTS: In the total sample four of the five dimensions of the CRA were found to contribute to the overall subjective burden experienced by informal caregivers. In the individual stroke and RA samples only two of the five dimensions emerged as relevant. SRB scores were significantly higher for caregivers of stroke patients, but no differences were found for the five dimensions of the CRA between the two samples. CONCLUSIONS: The dimensions of CRA are not equally important to the overall subjective burden of informal caregivers. To assess overall subjective burden, a measure based on a caregiver's own assessment of burden such as SRB needs to be used in addition to prevailing measures.

Trends in disability-free life expectancy.

PURPOSE: To assess trends in Disability-Free Life Expectancy, in life expectancy with disabilities according to levels of severity and in Disability-Adjusted Life Expectancy in the Netherlands between 1989 and 2000. METHOD: The disability-free life expectancy, a composite population health status measure, was calculated with data on long-term disability. Weights reflecting the impact of disability on personal functioning were assigned to different levels of severity of disability, in order to calculate a Disability-Adjusted Life Expectancy and to define cut-off points, in order to distinguish between levels of severity. RESULTS: At an aggregated level, for both males and females at the ages of 16 and of 65 years, an increase in years with disabilities and a decline in disability-free life expectancy were observed. These trends were mainly caused by a rise in the number of years with mild disabilities, with the number of years with moderate and severe disabilities decreasing. The combined changes have resulted in an increase in the Disability-Adjusted Life Expectancy. CONCLUSION: Trends in disability-free life expectancy and in years with disabilities provide support for a scenario of dynamic equilibrium. The number of years with moderate and severe disabilities has reduced, resulting in an increase in the number of years with minor disabilities. Further research should focus on the underlying causes of the increase of years with minor disabilities.

Monitoring the functional health status of stroke patients: the value of the Stroke-Adapted Sickness Impact Profile-30.

PURPOSE: To further validate the Stroke-Adapted Sickness Impact Profile-30 (SA-SIP30) and to determine its responsiveness in a stroke rehabilitation population. METHOD: Data of 122 communicative stroke patients (mean age 57 years), selected for an inpatient rehabilitation programme, were available. All had suffered different types of stroke. Six months and one year post-stroke, the patients completed the SIP68 plus nine stroke-specific questions from the SIP136, enabling us to derive the SA-SIP30 from the questionnaire. We determined internal consistency, construct and clinical validity and responsiveness of the SA-SIP30. Total, physical and psychosocial dimension scores were calculated. RESULTS: Internal consistency was moderate to good (alpha>0.68) and correlation between the SIP68 and the SA-SIP30 was high (r>0.85), indicating good construct validity for total score and both dimension scores. Clinical validity assessment showed that total and psychosocial dimensions scores were significantly higher for patients with a cortical infarction compared to respectively subarachnoid haemorrhage and subcortical infarction (p<0.05). Effect sizes for the SA-SIP30 were moderate (between 0.56 and 0.65). CONCLUSIONS: The SA-SIP30 proved valid and responsive in our stroke rehabilitation population. The major advantages of the SA-SIP30 are the lesser number of items and, therefore, the shorter completion time and the fact that it is a stroke-specific scale to determine health-related functional status.

The desire for support and respite care: preferences of Dutch informal caregivers.

Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42-47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care.

Dimension-specific burden of caregiving among partners of rheumatoid arthritis patients.

OBJECTIVES: To assess subjective caregiver burden among partners of rheumatoid arthritis (RA) patients and to identify partner and patient variables and objective caregiver burden related to subjective caregiver burden. METHODS: In 2001, 134 patients diagnosed with RA and their caregiving partners participated in a postal questionnaire survey. Information was gathered on age, gender and health problems of patient and partner, disease duration of the patient, objective caregiver burden and subjective caregiver burden of the partner (using the multidimensional Caregiver Reaction Assessment). Correlation coefficients were computed between the subjective caregiver burden dimensions. Multivariate analyses were performed to identify variables that explained the variation in subjective burden. RESULTS: Partners of RA patients derived, on average, a high level of self-esteem from giving care. Negative subjective caregiver burden was to a large degree caused by a disrupted schedule and to a smaller degree by a lack of family support, financial problems and loss of physical strength. Problems of the partner with mobility or with pain/discomfort and problems of the patient with self-care activities and activities of daily life had the largest impact on negative levels of subjective caregiver burden. CONCLUSIONS: Health parameters of the patient and partner have a considerable predictive value for the development of high levels of subjective burden in partners of RA patients. Support strategies should be developed for partners of RA patients, and should focus especially on reducing the burden caused by a disrupted schedule, and simultaneously on increasing the focus of caregivers on the positive aspects of caregiving.

Socioeconomic variations in the course of stroke: unequal health outcomes, equal care?

STUDY OBJECTIVE: The aim of this paper is to quantify the socioeconomic gap in long term health outcomes after stroke and related health care utilisation, in order to evaluate whether those in need of care do actually receive appropriate levels of care. DESIGN: Stroke patients from the lower socioeconomic group were compared with stroke patients from the higher socioeconomic group with respect to sociodemographic and clinical characteristics, health outcomes, and related health care utilisation. SETTING: Patients were recruited from admissions to 23 randomly selected hospitals in the Netherlands. PATIENTS: 465 patients were included who had had a stroke six months earlier and were followed up three years and five years after stroke. MAIN RESULTS: The observed odds ratios suggest that patients from the lower socioeconomic group experienced more disabilities up to three years after stroke and more handicaps up to five years after stroke. After adjusting for health care needs there were no significant associations between socioeconomic status and health care utilisation. The observed figures, however, suggest that a lower socioeconomic status tended to increase admission to nursing homes and to decrease receiving care in non-institutional settings. CONCLUSIONS: Overall, inequalities in long term health outcomes were observed but solid indications for large inequalities in health care utilisation were not found. More investments in coordinated stroke services are needed to alleviate the unfavourable health situation of disadvantaged groups and to ensure that health care services respond appropriately to the health care needs of different socioeconomic groups.

Socioeconomic status of very small areas and stroke incidence in the Netherlands.

OBJECTIVE: To examine whether characteristics of very small living areas can be used to predict disease incidence and to use these characteristics to assess socioeconomic differences in stroke incidence in the Netherlands. DESIGN: Characteristics of postcode areas of stroke patients are compared with characteristics of postcode areas of all individual people in the study region, using Poisson regression analysis. SETTING: Six provinces of the Netherlands, covering about half of the country. PATIENTS: 760 patients who in 1991 or 1992 were consecutively admitted because of stroke to 23 Dutch hospitals. MAIN RESULTS: Stroke incidence is significantly higher among people living in postcode areas with below average socioeconomic status (relative risk=1.27; 95% confidence intervals 1.08 to 1.51) and among people living in postcode areas with predominantly older inhabitants (RR=3.17; 95% CI=2.29 to 4.39). It is also significantly increased in more urbanised areas compared with the countryside, the highest incidence being found in the large cities (RR=1.78; 95% CI=1.31 to 2.44). CONCLUSIONS: A clear socioeconomic gradient in stroke incidence in the Netherlands is observed, with people living in detailed postcode areas with below average socioeconomic status experiencing a significantly higher risk of stroke. The analysis also confirms that characteristics of detailed postcode areas can effectively be used to differentiate between areas with and areas without stroke patients.