Costs and quality of life of multiple sclerosis in Sweden

The study objective was to analyse the costs and quality of life (QOL) of multiple sclerosis (MS) related to disease severity in Sweden as part of a study in nine European countries. Information on demographics, disease, resource utilisation, informal care needs, work capacity and QOL (utility) was collected using a questionnaire that was sent to patients registered with the Swedish organisation of patients with neurological disabilities (Neurologiskt Handikappades Riksförbund). The study used a prevalence-based and cross-sectional approach, and costs were estimated from a societal perspective. A total of 1,339 patients were included in the analysis. Seventy-three percent of patients were female, and the mean age was 53 years (standard deviation [SD], 12 years). The mean Expanded Disability Status Scale (EDSS) score was 5.1 (SD, 2.2); only 29% of patients had mild disease (EDSS score <4), 46% had moderate disease and 25% had severe disease (EDSS score ≥7). Costs were significantly correlated with disease severity, increasing sevenfold from around € 16.000 at EDSS scores of 0–1 to € 116.000 at EDSS scores of 8–9. At the same time, utility decreased with worsening disease from 0.825 to 0.047, with a mean established at 0.546 (SD, 0.287). This is significantly lower than utilities for an age- and gender-matched sample of the general population, which would be estimated at 0.80–0.85. Patients with a relapse during the last 3 months had a significant cost increase, of € 3.080, and a utility loss of 0.088. Costs and utilities are highly correlated with EDSS score, and the mean cost per patient in the sample is thus heavily influenced by the severity distribution in the sample. Compared to European estimates, patients with moderate and severe disease in our sample appear to be overrepresented, and costs can therefore not be directly extrapolated to the overall MS population in Sweden without adjustment. When correcting for estimated actual prevalence and use of disease modifying drugs (DMDs), the total cost of MS in Sweden is estimated at € 600 million. Compared to an earlier cost study in 1998 that included a similar sample, and adjusting for differential timing and estimated national use of DMDs, costs have increased by approximately 5% between 1998 and 2005.     

Excess costs of multiple sclerosis: a register-based study in Sweden

Background and objective

Population-based estimates of the socioeconomic burden of multiple sclerosis (MS) are limited, especially regarding primary healthcare. This study aimed to estimate the excess costs of people with MS that could be attributed to their MS, including primary healthcare.

Methods

An observational study was conducted of the 2806 working-aged people with MS in Stockholm, Sweden and 28,060 propensity score matched references without MS. Register-based resource use was quantified for 2018. Annual healthcare costs (primary, specialised outpatient, and inpatient healthcare visits along with prescribed drugs) and productivity losses (operationalised by sickness absence and disability pension days) were quantified using bottom-up costing. The costs of people with MS were compared with those of the references using independent t-tests with bootstrapped 95% confidence intervals (CIs) to isolate the excess costs of MS from the mean difference.

Results

The mean annual excess costs of MS for healthcare were €7381 (95% CI 6991–7816) per person with MS with disease-modifying therapies as the largest component (€4262, 95% CI 4026–4497). There was a mean annual excess cost for primary healthcare of €695 (95% CI 585–832) per person with MS, comprising 9.4% of the excess healthcare costs of MS. The mean annual excess costs of MS for productivity losses were €13,173 (95% CI 12,325–14,019) per person with MS, predominately from disability pension (79.3%).

Conclusions

The socioeconomic burden of MS in Sweden from healthcare consumption and productivity losses was quantified, updating knowledge on the cost structure of the substantial excess costs of MS.

     

The risk for multiple sclerosis in female nurse anaesthetists: a register based study

Background

Previous studies have suggested that exposure to organic solvents, including volatile anaesthetic agents, may be a risk factor for multiple sclerosis (MS), possibly in combination with genetic and other environmental factors.

Aims

To further investigate the role of volatile anaesthetic agents having similar acute toxic effects to other organic solvents.

Methods

Female nurse anaesthetists, other female nurses, and female teachers from middle and upper compulsory school levels were identified and retrieved from the 1985 census, Statistics Sweden. By means of the unique personal identity number in Sweden, these individuals were linked with the disability pension registers at The National Social Insurance Board and also with data on hospital care 1985–2000 at The National Board of Health and Welfare.

Results

The cumulative incidence rate ratio of MS was found to be increased in female nurse anaesthetists in relation to other nurses (statistically not significant) and teachers (statistically significant), respectively.

Conclusions

These findings give some support to previous findings of an increased risk for MS in nurse anaesthetists. This is interesting in the context of previous observations of organic solvents in general as a potential risk factor in MS.     

Parental age and risk of childhood cancers: a population-based cohort study from Sweden

BACKGROUND: Frequent germ line cells mutations were previously demonstrated to be associated with aging. This suggests a higher incidence of childhood cancer among children of older parents. A population-based cohort study of parental ages and other prenatal risk factors for five main childhood cancers was performed with the use of a linkage between several national-based registries. METHODS: In total, about 4.3 million children with their parents, born between 1961 and 2000, were included in the study. Multivariate Poisson regression was used to obtain the incidence rate ratios (IRR) and 95% confidence interval (CI). Children <5 years of age and children 5-14 years of age were analysed independently. RESULTS: There was no significant result for children 5-14 years of age. For children <5 years of age, maternal age were associated with elevated risk of retinoblastoma (oldest age group's IRR = 2.39, 95%CI = 1.17-4.85) and leukaemia (oldest age group's IRR = 1.44, 95%CI = 1.01-2.05). Paternal age was significantly associated with leukaemia (oldest age group's IRR = 1.31, 95%CI = 1.04-1.66). For central nervous system cancer, the effect of paternal age was found to be significant (oldest age group's IRR = 1.69, 95%CI = 1.21-2.35) when maternal age was included in the analysis. CONCLUSION: Our findings indicate that advanced parental age might be associated with an increased risk of early childhood cancers.     

Skin cancer in people with multiple sclerosis: a record linkage study

OBJECTIVE: The prevalence of multiple sclerosis (MS) varies with latitude: it increases with distance from the equator in both hemispheres. To seek evidence on whether solar radiation is a protective factor for MS, this study investigated whether skin cancer, as an indicator of solar radiation, is less common in people with MS than in others. DESIGN: Analysis of a database of linked hospital records and death certificates. SETTING: The Oxford Region of the National Health Service, England. SUBJECTS: A cohort comprising all people in the database with MS, and comparison cohorts of people with other diseases. RESULTS: Skin cancer was significantly less common in people with MS than in the main comparison cohort (rate ratio 0.49; 95% confidence interval 0.24 to 0.91). There was no general deficit of cancer in the MS cohort, and no deficit of skin cancer in cohorts of people with other autoimmune or neurological diseases. CONCLUSION: The findings support the hypothesis that solar radiation may have a protective influence on the development of MS.     

Migration status and limiting long-standing illness: a longitudinal study of women of childbearing age in Sweden

BACKGROUND: Despite a number of studies focusing on the health of immigrants, our knowledge of the risk of limiting long-standing illness (LLSI)) in migrant women of reproductive age is restricted. METHODS: A simple random sample of 5037 Swedish-born and 629 foreign-born women (aged 20-41 at the first occasion) were interviewed over the periods 1983-1990 and 1991-1998. The risk of LLSI was estimated by applying logistic regression for correlated data. RESULTS: First-generation labour-migrant women (OR=1.86) and refugee women (OR=1.75) had an increased risk of LLSI compared to Swedish-born women. The risk decreased only marginally (OR=1.64 and 1.48, respectively) after adjustment for marital status, socio-economic status, feelings of insecurity and the longitudinal effect of age. Women without employment, with a low attained level of education, without children, with feelings of insecurity or poor economic resources showed a high risk of LLSI. Similar results were observed when second-generation women were compared to Swedish-born women. However, immigrant women's health did not deteriorate more than that of Swedish-born women. CONCLUSIONS: First- and second-generation immigrant women of reproductive age had an increased risk of LLSI, compared to their Swedish counterparts. Furthermore, immigrant women's health did not become proportionally worse than the health of Swedish women during the 8-year period.     

Familial breast and ovarian cancer: a Swedish population-based register study

A cohort of offspring of mothers with breast or ovarian cancer diagnosed in 1958-1993 was established using Swedish population-based registers. The children (n = 158,041) were born between 1941 and 1993, and their cancer incidence was followed between 1961 and 1993. A total of 3,257 tumors in 3,102 children were found. Observed numbers of cases were compared with expected numbers based on national calendar year-, age-, and sex-specific incidences. For daughters of women with breast cancer, the standardized morbidity ratios for being diagnosed with breast cancer and ovarian cancer before age 50 years were 1.99 (95% confidence interval (CI): 1.86, 2.14) and 1.28 (95% CI: 1.05, 1.54), respectively. The corresponding figures for daughters of women with ovarian cancer were 1.79 (95% CI: 1.55, 2.07) and 2.38 (95% CI: 1.77, 3.12). The risks were raised if the mother's cancer was diagnosed at a young age, the mother had multiple breast/ovarian diagnoses, or there was a sister with breast/ovarian cancer. Among all offspring, increased risks were found for thyroid cancer, testicular cancer, and malignant melanoma, while lung cancer risk was decreased if the mother had had breast cancer. The authors developed a variance estimator for the standardized morbidity ratio to cope with overdispersion due to dependency within families.     

Work factors facilitating working beyond state pension age: Prospective cohort study with register follow-up

Objectives:The demographic changes in Europe underline the need for an extension of working lives. This study investigates the importance of physical work demands and psychosocial work factors for working beyond the state pension age (65 years).Methods:We combined data from three cohorts of the general working population in Denmark (DWECS 2005 and 2010, and DANES 2008), where actively employed workers aged 55–59 years replied to questionnaires about work environment and were followed until the age of 66 years in the Danish AMRun register of paid employment. Using logistic regression analyses, we calculated prevalence ratios (PR) and 95% confidence intervals (CI) for the association between physical and psychosocial work factors and working beyond state pension age, adjusted for age, sex, cohort, cohabiting, sector, income, vocational education, working hours, lifestyle, and previous sickness absence.Results:Of the 2884 workers aged 55–59 years, 1023 (35.5%) worked beyond the state pension age. Higher physical work demands was associated with a lower likelihood (PR 0.69, 95% CI 0.58–0.82) and a good psychosocial work environment was associated with higher likelihood (average of 7 items: PR 1.81, 95% CI 1.49–2.20) of working beyond state pension age. Stratified analyses did not change the overall pattern, ie, a good overall psychosocial work environment – as well as several specific psychosocial factors – increased the likelihood of working beyond state pension age, both for those with physically active and seated work.Conclusion:While high physical work demands was a barrier, a good psychosocial work environment seems to facilitate working beyond state pension age, also for those with physically active work.     

Hip osteoarthritis in a rural male population: A prospective population-based register study

OBJECTIVES: A cohort of rural men with urban referents was followed over 13 years to study the risk of developing osteoarthritis of the hip joint. METHODS: A group of 1,220 farmers, 1,130 matched rural non-farming men, and 1,087 urban men were identified in 1989 and followed over time. Information on hospital care and surgery was obtained from the national Swedish register of hospital care and surgery. RESULTS: More farmers than referents had been hospitalized for osteoarthritis and had undergone surgery for osteoarthritis of the hip joint. Hazard ratio for osteoarthritis of the hip joint was 3.0 (95% CI: 1.7-5.3) for farmers versus urban controls. Non-farming rural men had no increased risk as compared with urban referents. CONCLUSION: Farmers but not non-farming rural men had a significantly increased risk of developing osteoarthritis of the hip joint as compared with urban referents.     

Costs and quality of life in multiple sclerosis

We performed a cross-sectional, “bottom-up” observational study of resource use, costs, and quality of life in patients with multiple sclerosis (MS) in Germany. Six centers participated in the study. Patients were asked to complete a questionnaire, and a total of 737 patients returned it (response rate 66%). The questionnaire provided information on all resource consumption, medical, and nonmedical, work absence, informal care related to their MS, and quality of life (EuroQol). Simultaneously, medical charts were also abstracted for a subsample of 202 patients for comparison between answers in the questionnaires and registered data. Levels of disability were assessed using the Expanded Disability Status Scale. The mean age of the cohort was 41.9±14.1 years (disease onset 33.4), mean EDSS score 4.4 (range 1.0–9.5), and mean utility measured by EQ-5D 0.552±0.331). Mean total cost per patient and year was 65,400 DM, adjusted for use of interferons, which was higher in this sample than the current average use in Germany. When this cost is extrapolated to an estimated patient population of 120,000, total costs to society are estimated at 7.85 billion DM. Direct costs represented 57.5%, informal care accounted for 12.1% and indirect costs amounted to 42.5%. Public payers pay for an estimated 24,800 DM per patient or 38% of total costs. All types of costs (direct, informal care, indirect) increased with increasing disability, while utilities decreased.     

Ethnic differences in anticipated discrimination, generalised trust in other people and self-rated health: a population-based study in Sweden

This paper investigates the relationship between anticipation that employers may discriminate against certain people (not specified, but not specifically the respondent) according to race, colour of skin, religion or cultural background, and self-rated health, adjusting for social capital in the form of generalised (horizontal) trust in other people. It also investigates ethnic differences in anticipated discrimination in relation to self-rated health. The 2004 Public Health Survey in the Scania region of Sweden is a cross-sectional study. Twenty-seven thousand nine hundred and sixty-three respondents aged 18-80 years answered a postal questionnaire, which represents 59% of the random sample. A logistic regression model was used to assess the association between anticipated discrimination and self-rated health. Multivariate analyses of self-rated health were performed in order to investigate the importance of possible confounders (age, country of origin, education, economic stress, and generalised trust) on this association. Of the men and the women, 28.7 and 33.2%, respectively, rated their health as poor. Of the respondents, 16.0 and 28.7% reported that they anticipated that 'most employers' or 'approximately 50% of employers' would discriminate, respectively. Respondents with high age, born outside Sweden, with low/medium education, economic stress, low horizontal trust, and with anticipation that most or approximately 50% of employers (among men born in Sweden and all women) would discriminate had significantly higher odds ratios of poor self-rated health. Multiple adjustments had a slight effect on the significant relationship between anticipated discrimination and poor self-rated health for both men and women. The introduction of generalised trust in the models reduced the odds ratios to a limited extent. In conclusion, the anticipation that employers may discriminate against certain people (not the respondent) according to race, colour of skin, religion or cultural background is associated with poor self-rated health. However, this is a cross-sectional exploratory study and causality may go in both directions.     

Distilling the essence of appraisal: a mixed methods study of people with multiple sclerosis

Background

This study aimed to identify the essential parts of the Quality of Life (QOL) Appraisal Profile that capture the most important differences in the ways that people with multiple sclerosis respond to patient-reported outcome (PRO) measures. This process will enable the eventual development of a more practical, less resource-intensive version of the QOL Appraisal Profile to facilitate its use in clinical research and practice.

Methods

This is a secondary analysis of longitudinal PRO data (n = 859) of participants in the North American Research Committee on Multiple Sclerosis registry. Following the Rapkin and Schwartz (Health Qual Life Outcomes 2(1):14, 2004) model, we computed a “standard QOL model,” and then multivariate analysis of variance (MANOVA) and discriminant function (DF) analysis to identify patterns of appraisal measures associated with group differences in response to each QOL outcome.

Results

The “standard QOL model” explains a moderate amount of variance (i.e., 15–17 %) in physical functioning and disease-specific disability, and very little variance in mental health functioning. The MANOVAs identified the appraisal variables that mattered by PRO, and the DF analysis included 10–16 of the 83 potential appraisal variables in two DFs per outcome that distinguished groups with better, average, and worse expected scores, as well as groups with better-than-expected, as-expected, and worse-than-expected scores. The dominant appraisal parameters were more similar between the generic and disease-specific measure of physical functioning and disability, respectively, than between the mental health measure and the former two measures.

Conclusions

The practical implications of this work all revolve around a fundamental recommendation: Whenever one measures QOL, one should measure appraisal.

     

Childbearing and the risk of scleroderma: a population-based study in Sweden

This study examined associations between childbearing and risk of scleroderma by using national population-based registry data from Sweden. Women with a discharge diagnosis of scleroderma from 1964 to 1999 (n = 2,149) were identified in the Swedish Inpatient Register. These cases were matched by year and month of birth and region of residence to as many as five controls obtained from the Multi-Generation Register. Pregnancy history (number of births, age at each birth) was restricted to births before the first scleroderma-related hospitalization for cases and the corresponding age for their matched controls. Risk estimates, measured by the odds ratio and 95% confidence interval, were obtained by using conditional logistic regression. Nulliparity was associated with an increased risk of scleroderma (odds ratio = 1.37, 95% confidence interval: 1.22, 1.55). Risk decreased with increasing number of births. Similar results were found when analyses were limited to births up to 2 years or up to 5 years before hospitalization. Among parous women, younger age at first birth was associated with an increased risk of scleroderma. The association between lower parity and increased risk of scleroderma could reflect subfecundity caused by scleroderma before disease became clinically evident, possible common causes of infertility and scleroderma, or a protective effect of pregnancy through an unknown mechanism.     

Impact of low birthweight on subsequent fertility: population-based register study

Adverse birth outcomes may influence a family's wish for additional children. We investigated the influence of low birthweight in live births on subsequent fertility, and estimated secular trends of such an effect in a population-based cohort study of births arranged in consecutive sibship records in the Medical Birth Registry of Norway. We included births of order one to seven to all 587 785 mothers in Norway who had a first singleton birth in 1967-91. Associations between birthweight in 1 158 072 surviving index births of order one to six, 1967-91, and subsequent fertility (probability of another birth), 1967-97, were estimated as fertility ratios in Cox regression analysis. Giving birth to a live infant weighing < 3000 g had a negative effect on subsequent fertility, increasingly strong for decreasing birthweight. Low birthweight (<2500 g) was associated with a fertility ratio of 0.88 [95% confidence interval 0.87, 0.89]. This negative impact was stronger if the mother had also given birth to surviving children of low birthweight previously, particularly if combined with caesarean section in the most recent birth. The negative fertility effect of low birthweight grew slightly stronger between 1967 and approximately 1980, according to year of first birth. This trend paralleled reduced population fertility in the same period. The moderate negative impact of giving birth to a live infant of low birthweight on subsequent fertility could result from the combination of reduced wish for additional children and biological subfertility.     

Chronic illness and depressive symptoms in the elderly: a population-based study

A cross-sectional study of the distribution of depressive symptoms and association between depressed mood and chronic illness was conducted in a geographically defined population in southern California of 1617 men and women aged 65 years and older. The prevalence of depressed mood for the total population was 5.2%. Women exhibited a significantly higher mean depressive symptom score and a prevalence rate almost twice that of men. Depressive symptoms were associated with several risk factors in both sexes, including age, self-perception of current health status, number of reported chronic diseases and medications and amount of exercise. However, the relationship between physical illness and depressive symptoms appeared to differ by sex with respect to the nature of the disease or disability and the type of medication currently used. These findings indicate that the risk of depression does not diminish with age among the elderly as other studies have suggested.