Korinna Karampampa

Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from five European countries

Background: Multiple sclerosis (MS) is a common cause of neurological disability in young adults. The TRIBUNE study provides a detailed exploration of costs in relation to relapses and disease severity, and assesses the quality of life impact on MS patients in terms of utilities, fatigue and activities of daily living (ADL). Methods: Patients in five European countries (France, Germany, Italy, Spain and the United Kingdom) completed a self-administered web-based questionnaire capturing information on demographics, disease characteristics and severity (EDSS), co-morbidities, relapses, resource consumption, utilities, fatigue, and activities of daily living. Results: In total, 1261 MS patients completed the questionnaire. More than half of the patients (68%) had the relapsing–remitting form of the disease; 87% of the sample reported receiving MS treatments. Costs were higher with advancing disease severity; for mild patients (EDSS score ≤ 3) the costs ranged between €13,534 and €22,461 across countries; for moderate (EDSS score 4 – 6.5) between €28,524 and €43,948; for severe (EDSS ≥ 7) between €39,592 and €65,395. Relapses were also associated with increasing costs; the difference in the cost per patient per year for relapsing–remitting patients with EDSS score ≤ 5 that did experience at least one relapse during the past 12 months and those who did not ranged between €3321 and €9430. The quality of life of patients decreased with disease progression and existence of relapses. Conclusion: The TRIBUNE study provides an important update on the economic burden of MS in an era of more widespread use of disease-modifying therapies. It explores the cost of MS linked to relapses and disease severity, and examines the impact of MS on additional health outcomes beyond utilities such as ADL and fatigue.

Treatment experience, burden, and unmet needs (TRIBUNE) in Multiple Sclerosis study: the costs and utilities of MS patients in The Netherlands

Abstract Background: Multiple sclerosis (MS) is an important, highly disabling neurological disease, common among young adults in The Netherlands. Nevertheless, only a few studies to date have measured the burden imposed by MS on society in The Netherlands. Objectives: To estimate the cost and quality-of-life associated with MS in The Netherlands, while focusing on the burden of relapses and increasing disease severity. Methods: MS patients in The Netherlands (n = 263) completed a web-based questionnaire which captured information on demographics, disease characteristics and severity (Expanded Disability Status Scale [EDSS]), co-morbidities, relapses, resource consumption, utilities, fatigue and activities of daily living (ADL). Results: Most patients included in the study were receiving treatment for MS (76% of the sample). The mean cost per patient per year increased with worsening disability and was estimated at €30,938, €51,056, and €100,469 for patients with mild (EDSS 0–3), moderate (EDSS 4–6.5), and severe (EDSS 7–9) disability, respectively. The excess cost of relapses was estimated at €8195 among relapsing-remitting patients with EDSS score ≤5. The quality-of-life of patients decreased with disease progression and existence of relapses. Conclusions: The cost of MS in The Netherlands was higher compared to the results of previous studies. The TRIBUNE study provides an important update on the economic burden of MS in The Netherlands in an era of more widespread use of disease-modifying therapies. It explores the cost of MS linked to relapses and disease severity and examines the impact of MS on additional health outcomes beyond utilities such as ADL and fatigue. Conclusions: Study limitations:

Declining incidence trends for hip fractures have not been accompanied by improvements in lifetime risk or post-fracture survival - A nationwide study of the Swedish population 60 years and older

BACKGROUND Hip fracture is a common cause of disability and mortality among the elderly. Declining incidence trends have been observed in Sweden. Still, this condition remains a significant public health problem since Sweden has one of the highest incidences worldwide. Yet, no Swedish lifetime risk or survival trends have been presented. By examining how hip fracture incidence, post-fracture survival, as well as lifetime risk have developed between 1995 and 2010 in Sweden, this study aims to establish how the burden hip fractures pose on the elderly changed over time, in order to inform initiatives for improvements of their health. MATERIAL AND METHODS The entire Swedish population 60 years-old and above was followed between 1987 and 2010 in the National Patient Register and the Cause of Death Register. Annual age-specific hip fracture cumulative incidence was estimated using hospital admissions for hip fractures. Three-month and one-year survival after the first hip fracture were also estimated. Period life table was used to assess lifetime risk of hip fractures occurring from age 60 and above, and the expected mean age of the first hip fracture. RESULTS The age-specific hip fracture incidence decreased between 1995 and 2010 in all ages up to 94 years, on average by 1% per year. The lifetime risk remained almost stable, between 9% and 11% for men, and between 18% and 20% for women. The expected mean age of a first hip fracture increased by 2.5 years for men and by 2.2 years for women. No improvements over time were observed for the 3-month survival for men, while for women a 1% decrease per year was observed. The 1-year survival slightly increased over time for men (0.4% per year) while no improvement was observed for women. CONCLUSIONS The age-specific hip fracture incidence has decreased over time. Yet the lifetime risk of a hip fracture has not decreased because life expectancy in the population has increased in parallel. Overall, survival after hip fracture has not improved.

Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from Italy

Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating disease of the central nervous system. In Italy, the disease has a prevalence rate of 90–95 cases per 100,000 persons, with highest prevalence in the 25–34, 35–44 and 45–54 year age groups.1 It currently affects around 57,000 people in Italy.2 The disease has a significant impact on the healthcare systems, on social services and on non-paid caregivers (informal care). As shown in previous research for MS in Italy, direct medical, non-medical and indirect costs are directly impacted by advancing disability and relapses.3 The total cost of MS for the country is calculated at €1491.9 million (€2008) with informal care being the most expensive cost component, followed by indirect costs.4 The objective of the Treatment Experience, Burden and Unmet Needs (TRIBUNE) in MS study was to measure the socioeconomic burden of MS in Italy and to contribute to the existing literature by providing detailed, updated cost information while focusing on the association of relapses and disease severity with the costs of MS.

Trends in age at first hospital admission in relation to trends in life expectancy in Swedish men and women above the age of 60

Objectives To examine whether the first admission to hospital after the age of 60 has been postponed to higher ages for men and women in Sweden, in line with the shift in mortality. Design This nationwide observational study was based on data obtained from national registries in Sweden. The study cohort was created by linking the Register of the Total Population in Sweden with the National Patient Register and the Swedish Cause of Death Register. Setting The entire Swedish population born between 1895 and 1950 was followed up between 1987 and 2010 with respect to hospital admissions and deaths using the national registry data. Primary outcome measures The time from age 60 until the first admission to the hospital, regardless of the diagnosis, and the time from age 60 until death (remaining life expectancy, LE) were estimated for the years 1995–2010. The difference between these two measures was also estimated for the same period. Results Between 1995 and 2010 mortality as well as first hospital admission shifted to higher ages. The average time from age 60, 70, 80 and 90 until the first hospital admission increased at all ages. The remaining LE at age 60, 70 and 80 increased for men and women. For the 90-year-olds it was stable. Conclusions In Sweden, the first hospital admission after the age of 60 has been pushed to higher ages in line with mortality for the ages 60 and above. First admission to the hospital could indicate the onset of first severe morbidity; however, the reorganisation of healthcare may also have influenced the observed trends.

Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from the United Kingdom.

Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating disease of the central nervous system that imposes a significant disability to patients.1 The disease has a high prevalence in the United Kingdom (UK), with an estimated 110 to 127 cases per 100,000 persons2,3 resulting in about 85,000 MS cases. The total cost of the disease in the UK is calculated at approximately £1866 million (2008 prices).2 Healthcare costs as well as productivity losses are directly impacted by advancing disability and relapses.4 The objective of the Treatment Experience, Burden and Unmet Needs (TRIBUNE) in MS study was to measure the economic burden of MS in the United Kingdom and to contribute to the existing literature by providing detailed, updated cost information while discussing important aspects related to the impact of relapses and disease severity on direct medical costs, informal care and productivity losses.

Does improved survival lead to a more fragile population: time trends in second and third hospital admissions among men and women above the age of 60 in Sweden.

Background Life expectancy and time to first hospitalization have been prolonged, indicating that people live longer without needing hospital care. Life expectancy increased partially due to improved survival from severe diseases, which, however, could lead to a more fragile population. If so, time to a subsequent hospitalization could decrease. Alternatively, the overall trend of improved health could continue after the first hospitalization, prolonging also the time to subsequent hospitalizations. This study analyzes trends in subsequent hospitalizations among Swedish men and women above the age of 60, relating them to first hospitalization. It also looks at trends in the proportion of never hospitalized. Methods Individuals were followed in national registers for hospital admissions and deaths between 1972 and 2010. The proportion of never hospitalized individuals at given ages and time points, and the annual change in the risks of first and subsequent hospitalizations, were calculated. Findings An increase in the proportion of never hospitalized was seen over time. The risks of first as well as subsequent hospitalizations were reduced by almost 10% per decade for both men and women. Improvements were observed mainly for individuals below the ages of 90 and up to the year 2000. Conclusions The reduction in annual risk of both first and subsequent hospitalizations up to 90 years of age speaks in favor of a postponement of the overall morbidity among the elderly and provides no support for the hypothesis that the population becomes more fragile due to increased survival from severe diseases.

Corrigendum to “Cost of disorders of the brain in Europe 2010” [Eur. Neuropsychopharmacol. 21 (2011) 718–779]

Corrigendum to “Cost of disorders of the brain in Europe 2010” [Eur. Neuropsychopharmacol. 21 (2011) 718–779]

Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from Turkey

Abstract Objective: To estimate the economic burden of multiple sclerosis (MS) in Turkey, including the relapses and disease severity, and to evaluate the quality-of-life of MS patients. Methods: The Treatment Experience, Burden and Unmet Needs (TRIBUNE) study was a multi-national, cross-sectional, retrospective, burden-of-illness survey. Total costs were calculated using unit costs derived from price lists or published literature, where relevant, and inflated to 2011 TL prices. Results: A total of 295 MS patients (74% females) were included in the analysis. The population had a mean age of 36 years; 73% had the relapsing–remitting form. Mean Expanded Disability Status Scale (EDSS) score was 2.2. Twenty-two per cent of the MS patients required hospitalization in the past year and spent an average of 29.2 days/year in hospital. These values were 43% and 5.6 days for the outpatients, respectively. Total cost per patient/year was 18,700 TL (Turkish Lira). Total costs for patients with mild, moderate, and severe disability were 15,418 TL, 26,002 TL, and 44,208 TL per patient/year, respectively. The mean EuroQol 5D scores in the same groups were 0.73, 0.52, and 0.05, respectively. Conclusions: Multiple sclerosis imposes a significant economic burden on patients and society in Turkey.

Trajectories of disposable income among people of working ages diagnosed with multiple sclerosis : a nationwide register-based cohort study in Sweden 7 years before to 4 years after diagnosis with a population-based reference group

Objectives To describe how disposable income (DI) and three main components changed, and analyse whether DI development differed from working-aged people with multiple sclerosis (MS) to a reference group from 7 years before to 4 years after diagnosis in Sweden. Design Population-based cohort study, 12-year follow-up (7 years before to 4 years after diagnosis). Setting Swedish working-age population with microdata linked from two nationwide registers. Participants Residents diagnosed with MS in 2009 aged 25–59 years (n=785), and references without MS (n=7847) randomly selected with stratified matching (sex, age, education and country of birth). Primary and secondary outcome measures DI was defined as the annual after tax sum of incomes (earnings and benefits) to measure individual economic welfare. Three main components of DI were analysed as annual sums: earnings, sickness absence benefits and disability pension benefits. Results We found no differences in mean annual DI between people with and without MS by independent t-tests (p values between 0.15 and 0.96). Differences were found for all studied components of DI from diagnosis year by independent t-tests, for example, in the final study year (2013): earnings (−64 867 Swedish Krona (SEK); 95% CI−79 203 to −50 528); sickness absence benefits (13 330 SEK; 95% CI 10 042 to 16 500); and disability pension benefits (21 360 SEK; 95% CI 17 380 to 25 350). A generalised estimating equation evaluated DI trajectory development between people with and without MS to find both trajectories developed in parallel, both before (−4039 SEK; 95% CI −10 536 to 2458) and after (−781 SEK; 95% CI −6988 to 5360) diagnosis. Conclusions The key finding of parallel DI trajectory development between working-aged MS and references suggests minimal economic impact within the first 4 years of diagnosis. The Swedish welfare system was responsive to the observed reductions in earnings around MS diagnosis through balancing DI with morbidity-related benefits. Future decreases in economic welfare may be experienced as the disease progresses, although thorough investigation with future studies of modern cohorts are required.