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This study aims to assess the determinants of employment probabilities among people living with Human Immunodeficiency Virus (HIV) during a 15-year period (2001–2016) in Spain, focusing on the possible effects of occurrences such as the 2008 economic crisis. The probability of people living with HIV having a job was evaluated by applying several multivariate probit regression models. Differences between the employment status of people living with HIV and that of the general population were evaluated by applying genetic matching regression models. With respect to the former evaluation, for people living with HIV, the period before the crisis (2001–2007) was associated with a probability of being employed that was 2.43 percentage points (p.p.) higher than during the crisis, and the period after the crisis (2014–2016) with a probability that was 7.58 p.p. lower than during the crisis. Greater effects were also observed among males, the probability of being in employment before the economic crisis being higher (by 2.26 p.p.) and lower after the crisis (− 3.41 p.p.) than among women, and among those infected through drug use (6.18 p.p. and − 7.34 p.p. before and after the crisis, respectively), than among those infected through sex. When analysing the differences with respect to the general population, people living with HIV reported lower probabilities of being employed: by − 18 p.p. before the crisis, by − 15 p.p. during the crisis (years 2008–2013) and by − 10 p.p. after the crisis, implying a convergence in the prospects of employment with the passage of the years. Those differences were greater for people of basic educational level (− 23 to − 16 p.p.), a weaker immune system (− 34 p.p. to − 21 p.p.) and those infected through the use of drugs (− 31 p.p. to − 26 p.p.). Although the results suggest that the economic crisis had a greater effect on the employment prospects of people living with HIV, and that effect is still felt by that group, our findings also point towards a convergence of their employment prospects with those of the general population, over the 15-year period assessed. An analysis of the employment situation of people living with HIV might have helped when designing job-seeking methods and policies on the working environment, especially through the 15-year period considered, when the economic crisis had a greater effect on the job market.

A correction to this paper has been published: https://doi.org/10.1007/s10198-021-01323-y

Stroke is a major social and health problem. However, since the recent incorporation of new advances in its management, little is known about the cost of stroke. The aim of this study is to find out the real cost of stroke in Spain. This is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a stroke unit. Patients were recruited from 16 hospitals throughout Spain and followed up for 1 year. Sociodemographic, clinical, and economic data were collected. Costs (€ 2012) were estimated from the social perspective and were divided into direct healthcare (inpatient, outpatient, and medication), direct non-healthcare (mainly formal and informal care) and labor productivity losses. A total of 321 patients were included. Mean age was 72.1 years and 176 patients (54.8 %) were male. Total average cost per patient/year was €27,711. Direct healthcare costs amounted to €8491 per patient/year (68.8 % due to inpatient costs) and non-healthcare costs to an average of €18,643 per patient/year (89.5 % due to informal care). Productivity loss costs per patient/year were €276. Total costs of hemorrhagic strokes were slightly higher than ischemic (€28,895 vs. €27,569 per patient/year, p = 0.550) without significant differences. The main variables associated with higher costs were the presence of hypertension (€30,332 vs. €23,234 per patient/year, p

The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with Prader-Willi syndrome (PWS) in Europe. We conducted a cross-sectional study of patients with PWS from Spain, Bulgaria, Hungary, Germany, Italy, the UK, Sweden and France. Data on demographic characteristics, healthcare resource utilisation, informal care, labour productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. A total of 261 patients completed the questionnaire. The average annual costs ranged from € 3937 to € 67,484 between countries; the reference year for unit prices was 2012. Direct healthcare costs ranged from € 311 to € 18,760, direct non-healthcare costs ranged from € 1269 to € 44,035, and loss of labour productivity ranged from € 0 to € 2255. Costs were also shown to differ between children and adults. The mean EQ-5D index score for adult PWS patients ranged between 0.40 and 0.81 and the mean EQ-5D visual analogue scale score ranged between 51.25 and 90.00. The main strengths of this study lie in our bottom-up approach to costing and in the evaluation of PWS patients from a broad societal perspective. This type of analysis is very scarce in the international literature on rare diseases in comparison with other illnesses. We conclude that PWS patients incur considerable societal costs and experience substantial deterioration in HRQOL.

The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with juvenile idiopathic arthritis (JIA) in Europe. We conducted a cross-sectional study of patients with JIA from Germany, Italy, Spain, France, the United Kingdom, Bulgaria, and Sweden. Data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D-5L) questionnaire. A total of 162 patients (67 Germany, 34 Sweden, 33 Italy, 23 United Kingdom, 4 France, and 1 Bulgaria) completed the questionnaire. Excluding Bulgarian results, due to small sample size, country-specific annual health care costs ranged from €18,913 to €36,396 (reference year: 2012). Estimated direct healthcare costs ranged from €11,068 to €22,138; direct non-healthcare costs ranged from €7837 to €14,155 and labor productivity losses ranged from €0 to €8715. Costs are also shown to differ between children and adults. The mean EQ-5D index score for JIA patients was estimated at between 0.44 and 0.88, and the mean EQ-5D visual analogue scale score was estimated at between 62 and 79. JIA patients incur considerable societal costs and experience substantial deterioration in HRQOL in some countries. Compared with previous studies, our results show a remarkable increase in annual healthcare costs for JIA patients. Reasons for the increase are the inclusion of non-professional caregiver costs, a wider use of biologics, and longer hospital stays.

To estimate the social/economic costs of fragile X syndrome (FXS) in Europe and to assess the health-related quality of life (HRQOL) of patients and caregivers. A cross-sectional study was conducted in a sample of European countries. Patients were recruited through patients’ associations. Data on their resource use and absence from the labour market were retrospectively obtained from an online questionnaire. Costs were estimated by a bottom-up approach and the EuroQol-5 Domain (EQ-5D) questionnaire was used to measure patients’ and caregivers’ HRQOL. Five countries were included in the analysis. The mean annual cost of FXS per patient varied from €4951 in Hungary to €58,862 in Sweden. Direct non-healthcare costs represented the majority of costs in all countries but there were differences in the share incurred by formal and informal care among those costs. Costs were also shown to differ between children and adults. Mean EQ-5D utility score for adult patients varied from 0.52 in France (n = 42) to 0.73 in Hungary (n = 2), while for caregivers this score was consistently inferior to 0.87. Our findings underline that, although its prevalence is low, FXS is costly from a societal perspective. They support the development of tailored policies to reduce the consequences of FXS on both patients and their relatives.

The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with systemic sclerosis (SSc; scleroderma) in Europe. We conducted a cross-sectional study of patients with SSc (involving both localised and systemic sclerosis) from Germany, Italy, Spain, France, the UK, Hungary and Sweden. Data on demographic characteristics, healthcare resource utilisation, informal care, labour productivity losses and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. A total of 589 patients completed the questionnaire. The rate of patients with localised scleroderma, limited cutan and diffuse cutan SSc were 28, 68 and 4 %, respectively. Average annual costs varied from country to country and ranged from € 4607 to € 30,797 (reference year: 2012). Estimated direct healthcare costs ranged from € 1413 to € 17,300; direct non-healthcare costs ranged from € 1875 to € 4684 and labour productivity losses ranged from € 1701 to € 14,444. The mean EQ-5D index score for adult SSc patients varied from 0.49 to 0.75 and the mean EQ-5D visual analogue scale score was between 58.72 and 65.86. The main strengths of this study lie in our bottom-up approach to costing and our evaluation of SSs patients from a broad societal perspective. This type of analysis is very unusual in the international literature on rare diseases in comparison with other illnesses. We concluded that SSc patients incur considerable societal costs and experience substantial deterioration in HRQOL.

Background The main objective of this study was to analyse how the inclusion (exclusion) of social costs can alter the results and conclusions of economic evaluations in the field of Alzheimer’s disease interventions. Methods We designed a systematic review that included economic evaluations in Alzheimer’s disease. The search strategy was launched in 2000 and ran until November 2018. The inclusion criteria were: being an original study published in a scientific journal, being an economic evaluation of any intervention related to Alzheimer’s disease, including social costs (informal care costs and/or productivity losses), being written in English, using QALYs as an outcome for the incremental cost–utility analysis, and separating the results according to the perspective applied. Results It was finally included 27 studies and 55 economic evaluations. Around 11% of economic evaluations changed their main conclusions. More precisely, three of them concluded that the new intervention became cost-effective when the societal perspective was considered, whereas when using just the health care payer perspective, the new intervention did not result in a cost–utility ratio below the threshold considered. Nevertheless, the inclusion of social cost can also influence the results, as 37% of the economic evaluations included became the dominant strategy after including social costs when they were already cost-effective in the health care perspective. Conclusions Social costs can substantially modify the results of the economic evaluations. Therefore, taking into account social costs in diseases such as Alzheimer’s can be a key element in making decisions about public financing and pricing of health interventions.

To estimate the monetary value of informal care to people with Alzheimer’s disease (AD) in Spain and to identify the main determinants of the time of informal care. We used the Survey on Disabilities, Autonomy and Dependency carried out in Spain in 2008 to obtain information on disabled individuals with Alzheimer and their informal caregivers. Assessment of informal care time was performed using three different approaches: the proxy good method, the opportunity cost method and the contingent valuation method. A statistical multivariate analysis—an ordered probit model—was performed to study the determinants of informal care provided. The average number of required informal hours per year was 4,151. The cost per caregiver ranged from 31,839 to 52,760 euros under the proxy good method; it was estimated at 20,053 euros under the opportunity cost method; and it ranged between 18,680 and 29,057 euros under the contingent valuation method. The degree of dependency and the formal care services were the main variables that explained the variability of the informal time provided. When a person presents a very high level of dependency, the probability of receiving more than 100 h of informal care per week is 25.8 % higher than a non-dependent person with AD. Formal in-home care complements informal caregiving, while formal care outside the home replaces it. Informal care represents a high social cost in people with AD, regardless of the estimation method considered. A higher level of dependence is associated with more hours of informal care provided.

The aims of this study were to estimate medical expenditures on human immunodeficiency virus (HIV) treatment and to identify significant associated variables. We performed a retrospective multi-centre study in the Canary Islands using a sample of 569 patients recruited at outpatient visits. The study examined demographic and clinical variables, health-related quality of life (HRQOL), and health care resources. Clinical data was obtained from medical records and patient interviews. Several empirical models for identifying the relationship between health care costs and independent variables were developed. The greatest expense came from pharmaceutical expenditure (82.1% of direct costs), while hospital costs only represented 4.6% of total expenditure. The data showed a statistically significant association between health care costs and the CD4 count of the previous year. HRQOL was also a significant variable. Therefore, CD4 cell count can be used to predict health care costs in patients. Policymakers could use this information to help guide their decisions in allocating limited health care resources to HIV treatments.

Background: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. Methods: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. Results: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from €9509 to €49,233 (reference year 2012). Estimated direct healthcare costs ranged from €419 to €10,688; direct non-healthcare costs ranged from €7449 to €37,451 and labour productivity losses ranged from €0 to €7259. The average annual cost per patient across all countries was estimated at €31,390, out of which €5646 accounted for direct health costs (18.0 %), €23,483 accounted for direct non-healthcare costs (74.8 %), and €2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. Conclusion: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs. Supported by the social/economic burden and health-related quality of life in patients with rare diseases in Europe Project, which has received funding from the European Union within the framework of the Health Programme [Grant A101205]. The executive agency of the European Union is not responsible for any use that may be made of the information contained here. Sí