Is Value-Based Health Care Just the Latest Fad or can it Transform the Slovenian Health Care System?

You get what you pay for is a very old saying, originating from England in the mid-to late 1800s. However, despite being in use for more than two centuries, its meaning is still not fully grasped in Slovenian healthcare. While we claim that the healthcare system serves the patient and that the care provided is patient-centred, we do not even measure the treatment outcomes that matter to patients. Without measuring these, we do not know whether the treatment provided value to the patients, i.e. what were the benefits of the treatment relative to the costs. Slovenian payment models do not reimburse the providers for created patient-relevant value, but rather for the planned number of services or cases based on average incurred costs. It is thus time to digitalise the system, and start collecting, curating and analysing the relevant data to ensure that all stakeholders within the healthcare system co-deliver value to patients. While relevant stakeholders highlight notable challenges of implementing value-based healthcare in Slovenia, these are far from insurmountable.

EQ-5D-5L Value Set for Slovenia.

OBJECTIVES: The aim of this valuation study was to produce a value set to support the use of EQ-5D-5L data in decision making in Slovenia. METHODS: The study design followed the published EuroQol research protocol, and a quota sample was defined according to age, sex, and region. Overall, 1012 adult respondents completed 10 time trade-off and seven discrete choice experiment tasks in face-to-face interviews. The Tobit model was used to analyse the composite time trade-off (cTTO) data in order to generate values for the 3125 EQ-5D-5L health states. RESULTS: The data showed logical consistency, with more severe states being given lower values. The greatest disutility was shown in the pain/discomfort and anxiety/depression dimensions. In the EQ-5D-5L value set, the values range from -1.09 to 1. With the exception of UA5 (unable to perform usual activities), all other levels on all health dimensions were statistically different from 0 and from each other. Compared with the existing EQ-5D-3L value set, there is a slightly lower share of 'worse than dead' states (32.1% compared with 33.7%) and the minimum value is lower. CONCLUSIONS: Results have important implications for users of the EQ-5D-5L in Slovenia and regions. It is a robust and up-to-date value set and should be the preferred value set used in adults in Slovenia and in neighbouring countries without their own value set.

Costs and Quality of Life in Patients With Systemic Arterial Hypertension in Slovenia.

OBJECTIVES: Systemic arterial hypertension (SAH) is one of the most critical risk factors for morbidity in chronic noncommunicable diseases. The aim of this study was to estimate the costs incurred by and the health-related quality of life (HRQoL) for a sample of patients with AH aged ≥ 65, in 2019. METHODS: A sample of 142 patients who were taking medicines for SAH was selected from the urban and rural areas. The patients consented to participate in the study. Patients also reported their out-of-pocket expenditures connected to SAH and their HRQoL. HRQoL was measured using generic 5-level version of EQ-5D (EQ-5D-5L) and the disease-specific MINICHAL questionnaires. Descriptive analysis was used to present the results. Calculations were made using R (v4.01) software. RESULTS: A sample of 141 patients filled out 17-item MINICHAL and 142 filled out the EQ-5D-5L questionnaire. Patients' MINICHAL mood and somatic domain scores were 5.5 and 3.5, respectively. EQ-5D-5L mean index utility score was 0.7 and the mean EQ VAS was 70.9. Pain/discomfort was the most affected health dimension as 60.6% of patients reported having problems. The 2 HRQoL questionnaires are moderately correlated (-0.215). The average annual costs of SAH treatment amounted to €274.3 per patient. The largest share of costs is represented by pharmacological treatment (30.5%) and out-of-pocket expenses (28.2%). CONCLUSIONS: Our study is the first study in Slovenia to assess the costs incurred by and HRQoL of patients with SAH using bottom-up approach and societal perspective. It offers important input in a decision-analytic model to assess cost-effectiveness of interventions to reduce the burden of SAH.

Telemonitoring of Elderly with Hypertension and Type 2 Diabetes at the Primary Care Level: Protocol for a Multicentric Randomized Controlled Pilot Study.

Introduction: Arterial hypertension (AH) and type 2 diabetes (T2D) represent a significant burden for the public health system, with an exceptionally high prevalence in patients aged ≥65 years. This study aims to test the acceptability, clinical effectiveness, and cost-effectiveness of telemonitoring in elderly patients with AH and T2D at the primary care level. Methods: A m ulti-centre, prospective, randomized, controlled t rial w ill be conducted. Patients a ged ≥ 65 y ears with AH and T2D will be randomized in a 1:1 proportion to a mHealth intervention or standard care group. Patients in the intervention group will measure their blood pressure (BP) twice weekly and blood glucose (BG) once monthly. The readings will be synchronously transmitted via a mobile application to the telemonitoring platform, where they will be reviewed by a general practitioner who will indicate changes in measurement regimen or carry out a teleconsultation. The primary endpoint will be a change in systolic BP (SBP) and glycated haemoglobin (HbA1c) relative to standard care up to 12 months after inclusion. Secondary endpoints will be a change in other observed clinical variables, quality-of-life indexes, and costs. Expected results: Telemonitoring will be an acceptable method of care associated with significant reductions in SBP and HbA1c levels and an increase in quality-of-life indexes in the intervention group. However, the cost-effectiveness threshold (incremental cost-effectiveness ratio below €25,000/quality-adjusted life year) might not be reached. Conclusion: This study will provide new evidence for scaling up telemonitoring network at the primary care level and modifying telemonitoring protocols to achieve the best clinical and cost-effective outcomes.

Predicting Patient-Level 3-Level Version of EQ-5D Index Scores From a Large International Database Using Machine Learning and Regression Methods.

OBJECTIVES: This study aimed to evaluate the performance of machine learning and regression methods in the prediction of 3-level version of EQ-5D (EQ-5D-3L) index scores from a large diverse data set. METHODS: A total of 30 studies from 3 countries were combined. Predictions were performed via eXtreme Gradient Boosting classification (XGBC), eXtreme Gradient Boosting regression (XGBR) and ordinary least squares (OLS) regression using 10-fold cross-validation and 80%/20% partition for training and testing. We evaluated 6 prediction scenarios using 3 samples (general population, patients, total) and 2 predictor sets: demographic and disease-related variables with/without patient-reported outcomes. Model performance was evaluated by mean absolute error and percent of predictions within clinically irrelevant error range and within correct health severity group (EQ-5D-3L index <0.45, 0.45-0.926, >0.926). RESULTS: The data set involved 26 318 individuals (clinical settings n = 6214, general population n = 20 104) and 26 predictor variables plus diagnoses. Using all predictors and the total sample, mean absolute error values were 0.153, 0.126, and 0.131, percent of predictions within clinically irrelevant error range were 47.6%, 39.5%, and 37.4%, and within the correct health severity group were 56.3%, 64.9%, and 63.3% by XGBC, XGBR, and OLS, respectively. The performance of models depended on the applied evaluation criteria, the target population, the included predictors, and the EQ-5D-3L index score range. CONCLUSIONS: Regression models (XGBR and OLS) outperformed XGBC, yet prediction errors were outside the clinically irrelevant error range for most respondents. Our results highlight the importance of systematic patient-reported outcome (EQ-5D) data collection. Dialogs between artificial intelligence and outcomes research experts are encouraged to enhance the value of accumulating data in health systems.

Comparison of Adult and Adolescent Preferences Toward EQ-5D-Y-3L Health States.

OBJECTIVES: The international EQ-5D-Y-3L valuation protocol suggests obtaining preferences for EQ-5D-Y-3L health states from a sample of the general adult population. There is discussion around involving children and adolescents in the processes of preference elicitation and decision making. The objective of this study was to compare the preferences for EQ-5D-Y-3L obtained from adolescents for themselves to those of adults considering a hypothetical 10-year-old child in Germany, Slovenia, and Spain. METHODS: A sample of a minimum of 700 adolescents and 1000 adults in each country was recruited through online panels. An online discrete choice experiment was used to obtain health-state preferences. For the purposes of comparison, all coefficients were rescaled to a 1 (best) to 0 (worst) scale. The differences between preferences in both samples were analyzed via the relative attribute importance of health dimensions from the mixed logit models. RESULTS: Statistically significant differences between the preferences for EQ-5D-Y-3L states given by the 2 samples were observed in all 3 countries. The overall relative attribute importance was similar between adolescents and adults; adolescents usually gave more importance to mobility and self-care, and less to anxiety/depression. The rank-order of the dimension levels between adults and adolescents differs in all 3 countries. CONCLUSIONS: Preferences toward EQ-5D-Y-3L states differ if estimated by adults taking the perspective of a child or by the adolescents themselves. Although it seems possible to obtain adolescents' preferences for inclusion in EQ-5D-Y-3L value sets, the desirability and acceptance of their preferences by researchers and decision makers need to be explored further.

Changes in the level of knowledge of diabetes among elderly with diabetes in Slovenia in the period 2011-2020.

AIMS: To achieve better treatment decisions, type 2 diabetes patients need to be empowered also through knowledge increase. The aim of this study was to evaluate and compare the level of knowledge and overall perceptions of type 2 diabetes within the elderly diabetic patients before and after the National Diabetes Prevention and Care Development Programme 2010-2020. METHODS: Diabetes knowledge test was used in two cross-sectional studies in 2011 and 2020 where the samples of type 2 diabetes patients 65+ were surveyed. Besides descriptive statistics, non-parametric tests and general linear model were used to compare the level of knowledge. RESULTS: The comparison reveals that in the last decade the general knowledge about diabetes has not significantly changed (U = 16942, p = 0.809). The average scores in 2011 and 2020 were 7.98 ± 2.41 and 7.96 ± 2.36 respectively. The average level of knowledge has slightly worsened for patients in the age group 80+, while it remained approximately the same in the other three age groups (65-69, 70-74, 75-79). CONCLUSIONS: Our study has shown that despite the National Diabetes Prevention and Care Development Programme the knowledge of elderly diabetic patients in Slovenia remained at the same level or worsened.

Standard set of patient-reported outcomes for personality disorder.

PURPOSE: The purpose of the article is to present standard set of outcomes for people with personality disorder (PD), in order to facilitate patient outcome measurement worldwide. METHODS: The International Consortium for Health Outcomes Measurement (ICHOM) gathered a multidisciplinary international working group, consisting of 16 experts, including clinicians, nurses, psychologists, methodologists and patient representatives, to develop a standard set of outcome measures for people with PD. The Delphi method was used to reach consensus on the scope of the set, outcome domains, outcome measures, case-mix variables and time points for measuring outcomes in service users. For each phase, a project team prepared materials based on systematic literature reviews and consultations with experts. RESULTS: The working group decided to include PD, as defined by International Classification of Diseases 11th revision (ICD-11). Eleven core outcomes and three optional outcomes across four health domains (mental health, behaviour, functioning and recovery) were defined as those relevant for people with PD. Validated measures for the selected outcomes were selected, some covering more than one outcome. Case-mix variables were aligned to other ICHOM mental health standard sets and consisted of demographic factors and those related to the treatment that people received. The group recommended that most outcomes are measured at baseline and annually. CONCLUSION: The international minimum standard set of outcomes has the potential to improve clinical decision making through systematic measurement and comparability. This will be key in improving the standard of health care for people with PD across the world.

EQ-5D-Y Value Set for Slovenia.

BACKGROUND: A value set for the EuroQoL 5-Dimensions (EQ-5D)-Y in Slovenia is not yet available, making the calculation of quality-adjusted life-years (QALYs) for children and adolescents using this generic instrument impossible. OBJECTIVE: The main objective of our study was to obtain adult preferences towards EQ-5D-Y health states in Slovenia, following the EQ-5D-Y-3L international valuation protocol. The adults were asked to take the perspective of a hypothetical 10-year-old child. METHOD: A sample of 1074 adults in Slovenia completed an online discrete-choice experiment (DCE) survey on EQ-5D-Y health states. The latent scale issue was addressed by obtaining the value of the anchor (33333) with 200 composite time trade-off (cTTO) interviews. A mixed (random coefficients) logit model was used to estimate the value set. RESULTS: All the estimated coefficients of the mixed logit model were statistically significant at the 1% level and had an expected negative sign. The most important health dimension in EQ-5D-Y is pain/discomfort, followed by anxiety/depression, usual activities, and mobility, with self-care being the least important health dimension. CONCLUSIONS: The study addresses an important research gap and presents the EQ-5D-Y value set for Slovenia. At the time of writing, no published value sets are available for the EQ-5D-Y-3L appropriate for use in QALY calculations, making this value set the first EQ-5D-Y value set in the world.

Slovenia: Health System Review.

This analysis of the Slovene health system reviews recent developments in organization and governance, health financing, health care provision, health reforms and health system performance. Slovenia has a statutory health insurance system with a single public insurer, providing almost universal coverage for a broad benefits package, though some services require relatively high levels of co-insurance (called co-payments in Slovenia). To cover these costs, about 95% of the population liable for cost-sharing purchases complementary, voluntary health insurance. Health expenditure per capita and as a share of GDP has increased slightly, but still trails behind the EU average. Among statutory health insurance countries, Slovenia is rather unique in that it relies almost exclusively on payroll contributions to fund its system, making health sector revenues vulnerable to economic and labour market fluctuations, and population ageing. Important organizational changes are underway or have been implemented, especially in prevention, primary, emergency and long-term care. Access to services is generally good, given wide coverage of statutory health insurance. Further, Slovenia has some of the lowest rates of out-of-pocket and catastrophic spending in the EU, due to extensive uptake of complementary voluntary health insurance. Yet long waiting times for some services are a persistent issue. Though population health has improved in the last decades, health inequalities due to gender, social and economic determinants and geography remain an important challenge. There is variation in health care performance indicators, but Slovenia performs comparatively well for its level of health spending overall. As such, there is clear scope to improve health and efficiency, including balancing population needs when planning health service volumes. Recently, the Slovene health care system was overwhelmed by the demand for COVID-19-related care. The pandemicâs longer-term effects are still unknown, but it has significantly impacted on life expectancy in the short-term and resulted in delayed or forgone consultations and treatments for other health issues, and longer waiting times. Additional challenges, which are necessary to address to ensure long-term sustainability, strengthen resiliency and improve the capacity for service delivery and quality of care of the health system include: 1) health workforce planning; 2) outdated facilities; 3) health system performance assessment; and 4) implementation of current LTC reform.

Validation of the Hungarian version of the CarerQol instrument in informal caregivers: results from a cross-sectional survey among the general population in Hungary.

PURPOSE: The CarerQol instrument has been designed and validated as an instrument able to measure both the positive and the negative impacts of caregiving on the quality of life of informal caregivers (CarerQol-7D), as well as their general happiness (CarerQol-VAS). The aim of this study was to assess the construct validity of the CarerQol in the Hungarian context. METHODS: The CarerQol was translated into Hungarian. Subsequently, in a cross-sectional online survey, representative for the general Hungarian population (N = 1000), informal caregivers were identified (N = 149, female 51.2%, mean age 53.2). Clinical, convergent and discriminant validity of the CarerQol were evaluated in relation to the caregivers' and care recipients' EQ-5D-5L health status, and caregiving situation characteristics. RESULTS: Average CarerQol-7D and CarerQol-VAS scores were 76.0 (SD 16.2) and 6.8 (SD 2.3), respectively. CarerQol-7D and CarerQol-VAS scores were significantly correlated with caregiving time (r = - 0.257; - 0.212), caregivers' EQ-5D-5L scores (r = 0.453; 0.326) and the CarerQol-7D also with care recipients' EQ-5D-5L scores (r = 0.247). CarerQol-7D scores differed significantly with relevant caregiving characteristics (e.g. nature and severity of care recipients' health status, sharing household) and both the CarerQol-7D and CarerQol-VAS with the overall care experience. CONCLUSION: Our findings confirmed the validity of the Hungarian language version of the CarerQol and support the cross-cultural validity of the instrument. CarerQol-7D scores performed better in distinguishing caregiving situation characteristics than the general happiness measure CarerQol-VAS. Care recipients' health status was only weakly associated with informal caregivers' care-related quality of life and happiness. Caregivers' own health and caregiving circumstances were more strongly associated with these scores.

Health related QoL in celiac disease patients in Slovenia.

BACKGROUND: Measurements of health-related quality of life (HRQoL) among celiac disease patients using a validated questionnaire have been lacking in Slovenia. This study aims to measure HRQoL in celiac disease (CD) patients using EQ-5D internationally validated questionnaire and comparing it to the HRQoL of the general population. METHODS: In this cross sectional analysis all of the approximately 2000 members of the Slovenian Celiac Society were invited to take part. We used a 3 step approach for recruitment and data collection. HRQoL was evaluated through the EuroQoL EQ-5D-5L instrument (Slovenian version) and analysed using the ordinal logistic regression. RESULTS: Out of 321 patients who gave their consent, 247 celiac patients were included in the study (77%). 68% of the participants were female and 53% of them lived in an urban setting. Most patients originated from North-East Slovenia, whereas approximately 30% of patients came from other Slovenian regions. The EQ-5D respondents' self-reported health status at the time of the study show that most patients have slight or no problems when living with CD. The duration of the gluten-free diet, academic education and rare (< 1 × year) doctor visits affect EQ-5D in a positive way. On the other hand, higher age and chronic rheumatic disease were negatively associated with EQ-5D also when compared to the general population. CONCLUSION: This is the first Slovenian study to measure the HRQoL of Slovenian CD patients, using an internationally validated questionnaire. The results of our study show that HRQoL is slightly impaired among Slovenian patients with CD. Clinical characteristics are better determinants of their HRQoL than socio-demographic factors. Greater awareness of the impact of CD on patients' HRQoL would improve the holistic management of CD patients.

EQ-5D-5L Slovenian population norms.

BACKGROUND: The study aims to present Slovenian EQ-5D-5L population norms for different age and gender subgroups that can be used as reference values in future studies concerning health status. The secondary aim is to compare those norms with population norms from some other countries in Europe and elsewhere. METHODS: The cross-sectional survey was conducted between November 2019 and February 2020 via online panel. 1071 adults aged 18+ were included in the survey. The general population was sampled using quota sampling in terms of age, gender, and NUTS2 region. In the study, the EQ-5D-5L Slovenian online version was used. Descriptive statistics was used to present health status by age groups and genders for the EQ-5D-5L descriptive system, EQ VAS and the EQ-5D-5L index score. The latter was derived from Slovenian EQ-3D-3L tariff, transformed to five levels using the crosswalk methodology. RESULTS: The mean EQ VAS score in the Slovenian population was 79.9, mean utility index was 0.808. 28.2% of the population did not have problems on any dimension and 3.9% of the population had problems on all dimensions. Persons residing in Western Slovenia had, on average, 0.016 higher utility score, compared to Eastern Slovenia. Effect of gender was not significant. Age was negatively associated with both utility index and EQ VAS score. Education was positively correlated to health status. Problems on dimensions were generally increasing with age, except for anxiety/depression dimension, where youngest group (ages 18-29) reported more anxiety/depression compared to older counterparts. Self-reported anxiety/depression was more pronounced in women. CONCLUSIONS: Similarly to other countries, the health generally deteriorates with age, except for the anxiety/depression dimension where the share of respondents reporting no problems was lowest in the youngest age group. The open question for the future remains, whether population norms from this online sample differ significantly from the actual EQ-5D-5L health status data of the Slovenian general population.

Valuation of EQ-5D-3l Health States in Slovenia: VAS Based and TTO Based Value Sets.

INTRODUCTION: The two primary objectives of this paper were (a) to develop first logically consistent TTO based EQ-5D-3L value sets for Slovenia and (b) to revisit earlier developed VAS based EQ-5D-3L value sets. METHODS: Between September 2005 and April 2006, face-to-face interviews with 225 individuals in Slovenia were conducted. Protocols from the Measurement and Value of Health study were followed closely. Each respondent valued 15 health states out of a total of 23. Model selection was informed by the criteria monotonicity/logical consistency. Predictive accuracy was assessed in terms of mean square difference between out-of-sample predictions and corresponding observed means, as well as Lin's Concordance Correlation Coefficient. RESULTS: Modelling was based on 2,717 VAS and 2,831 TTO values elicited from 225 respondents. A 6-parameter constrained regression model with a supplementary power term was selected for VAS and TTO value sets, as it produces monotonic values, and proved superior in terms of out-of-sample predictive accuracy over the tested alternatives. CONCLUSION: This is the first EQ-5D-3L TTO based value set in Slovenia and the second in Central and Eastern Europe (besides Poland). It is also the first monotonic and logically consistent VAS value set in Central and Eastern Europe. Comparisons with Polish and UK TTO values show considerable differences, mostly due to mobility with having a substantially greater weight in Slovenia. The UK value set generally produces lower values and the Polish value set higher values for mild states.

Crosswalk EQ-5D-5L Value Set for Slovenia.

INTRODUCTION: Due to the availability of the EQ-5D-5L instrument official translation into Slovenian its use is widespread in Slovenia. However, the health profiles obtained in many studies cannot be ascribed their appropriate values as the EQ-5D-5L value set does not yet exist in Slovenia. Our aim was to estimate an interim EQ-5D-5L value set for Slovenia using the crosswalk methodology developed by the EuroQol Group on the basis of the EQ-5D-3L Slovenian TTO value set. Our secondary aim was to compare the interim values obtained with the EQ-5D-3L Slovenian values. METHODS: To obtain a Slovenian interim EQ-5D-5L value set, we applied the crosswalk methodology developed by the EuroQol Group to the Slovenian EQ-5D-3L TTO value set. We examined the differences between values by comparing the mean 3L and 5L value scores and the distribution of values across all respondents. RESULTS: By definition, 3-level and 5-level versions have the same range (from 1 to -0.495) and a health state coded 22222 in the 3-level version corresponds to 33333 in the 5-level version. While the addition of a "slight" severity level (22222) in the 5-level version has a low informational value, the addition of a "severe" health state (44444) covers larger range of the scale. The 5-level version results in fewer health states being valued below 0 and above 0.8. CONCLUSION: The EQ-5D-5L value set, based on the crosswalk methodology, should be used until a value set for the EQ-5D-5L is derived from preferences elicited directly from a representative sample of the Slovenian general population.

Comparing Quality of Life of General Population and Orthopedic Patients in Slovenia.

OBJECTIVE: To our knowledge this is the first study presenting descriptive EQ-5D health profile and VAS scores for orthopedic patients in Slovenia. Furthermore, EQ-5D-3L population norms for Slovenia are presented. The aims of this study are (1) to provide population norms for EQ-5D-3L in Slovenia according to age and sex and (2) to compare different groups of orthopaedic patients' health state among themselves as well as to the general population. METHODS: Data on orthopedic patients' preoperative health status assessment were recorded (n = 1118). The health status of 4 groups of orthopedic patients was analyzed and compared using EQ VAS and the EQ-5D descriptive profile. The results were compared with Slovenian population norms, which were calculated using the EQ-5D valuation set database from year 2000 (n = 708). RESULTS: As expected, a higher proportion of patients than the general population report problems on all dimensions. The opposite is true only for mobility and anxiety/depression dimension for shoulder surgery patients. Hip endoscopy patients have the lowest health-related quality of life (HRQoL) out of all patient groups using EQ VAS and EQ-5D descriptive profiles. CONCLUSION: The population norms presented will be useful for many researchers trying to compare HRQoL among various patient groups or the general population. Separate use of the descriptive profile of the EQ-5D is informative when assessing HRQoL in orthopedic patients and is in line with VAS values. The results can support further studies on health needs assessment as well as decisions on funds allocation among groups of orthopedic patients.

Development of Population Tariffs for the CarerQol Instrument for Hungary, Poland and Slovenia: A Discrete Choice Experiment Study to Measure the Burden of Informal Caregiving.

BACKGROUND: The CarerQol instrument can be used in economic evaluations to measure the care-related quality of life of informal caregivers. Tariff sets are available for Australia, Germany, Sweden, the Netherlands, the UK, and the USA. OBJECTIVE: Our objective was to develop tariff sets for the CarerQol instrument for Hungary, Poland and Slovenia and to compare these with the existing value sets. METHODS: Discrete-choice experiments were carried out in Hungary, Poland and Slovenia. Data were collected through an online survey between November 2018 and January 2019, using representative samples of 1000 respondents per country. Tariffs were calculated from coefficient estimates from panel mixed multinomial logit models with random parameters. RESULTS: All seven CarerQol domains contributed significantly to the utility associated with different caregiving situations. Attributes valued highest were 'physical health' (tariffs for no problems were 15.6-21.8), 'mental health' (18.1-18.9) and 'fulfilment' (16.3-22.9). Value sets were comparable across the countries, although in Poland 'a lot of fulfilment' was valued higher (22.9) than in Hungary (16.3) and Slovenia (17.1). Compared with existing value sets, in the three Central European countries, 'fulfilment' was more important, whereas 'financial problems' were less important. CONCLUSION: For the first time in the Central and Eastern European region, country-specific tariffs are now available for the Hungarian, Polish and Slovenian versions of the CarerQol instrument. This facilitates inclusion of the impact of informal care in economic evaluations. Our results can be used to develop and evaluate country-specific health policy strategies to support informal caregivers. The differences found in informal care preferences highlight the limited transferability of CarerQol tariffs across European regions.

The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys.

BACKGROUND: We aimed to investigate the burden of informal care in Hungary (HU), Poland (PL) and Slovenia (SI). METHODS: A cross-sectional online survey was performed involving representative samples of 1000 respondents per country. Caregiving situations were explored; health status of informal caregivers/care recipients and care-related quality of life were assessed using the EQ-5D-5L and CarerQol-7D. RESULTS: The proportion of caregivers was (HU/PL/SI) 14.9, 15.0 and 9.6%, respectively. Their mean age was 56.1, 45.6 and 48.0, and the average time spent on informal care was 27.6, 35.5 and 28.8 h/week. Chronic care was dominant (> 1 year: 78.5%, 72.0%, 74.0%) and care recipients were mainly (own/in-law) parents. Average EQ-5D-5L scores of care recipients were 0.53, 0.49 and 0.52. For Poland and Slovenia, EQ-5D-5L scores of informal care providers were significantly lower than of other respondents. Average CarerQol-7D scores were (HU/PL/SI) 76.0, 69.6 and 70.9, and CarerQol-VAS was 6.8, 6.4 and 6.6, respectively. Overall, 89, 87, and 84% of caregivers felt some or a lot fulfilment related to caring. Problems with combining tasks with daily activities were most important in Hungary and Slovenia. Women had a higher probability of being a caregiver in Hungary. CarerQol-7D scores were significantly associated with caregivers' EQ-5D-5L scores. In Hungary and Poland, living in a larger household was positively, while caring for patients with mental health problems was negatively associated with CarerQol-7D scores. CONCLUSIONS: These first results from the Central and Eastern European region using preference-based measures for the evaluation of informal care can serve as a valuable input for health economic analyses.

EQ-5D studies in nervous system diseases in eight Central and East European countries: a systematic literature review.

BACKROUND: Guidelines for economic analyses of health care technologies require local input data for reimbursement decisions in the countries of Central and Eastern Europe (CEE). The aim of this study was to systematically review and analyse the available empirical studies using the EQ-5D instrument as a measure of the health-related quality of life (HRQoL) in patients with neurological diseases. METHODS: A systematic literature search was performed up to 1st April 2018 to identify relevant studies in eight selected CEE countries. Original articles reporting on studies of neurological diseases using the EQ-5D instrument were analysed. RESULTS: Thirty-six articles, describing the results of 38 samples of patients and a total of 13,005 patients were included in the review. Most studies were from Hungary (44.4%) and none from Romania or Slovakia. EQ-5D utility scores were reported in 33 (91.7%) articles. In multiple sclerosis (MS) being the most represented disease, the average utility scores ranged from 0.49 in Austria to 0.80 in Poland with a weighted average of 0.69. EQ VAS scores for MS ranged from 39 in Czech Republic to 72.0 in Poland, with weighted average of 59.1. MS patients, together with epilepsy and essential tremor patients, estimated their HRQoL among the highest. CONCLUSIONS: EQ-5D research activity in neurology has been increasing through the years in studied CEE countries. There are clinical areas with the significant social burden, such as a migraine or meningitis, that are completely lacking data, other areas, such as stroke or epilepsy, with very scarce data.

Towards a Central-Eastern European EQ-5D-3L population norm: comparing data from Hungarian, Polish and Slovenian population studies.

BACKGROUND: EQ-5D-3L population data are available only from Hungary, Poland and Slovenia in Central and Eastern Europe (CEE). We aimed to compare the accessible studies and estimate a regional EQ-5D-3L population norm for CEE. METHODS: A combined dataset using patient-level data of 8850 respondents was created. Based on the European Census of 2011, regional population norm estimates were calibrated by gender, age and education for the joint citizenry of 11 CEE countries. RESULTS: EQ-5D-3L health states were available for 6926 and EQ VAS scores for 6569 respondents. Demographic characteristics of the samples reflected the recruitment methods (Hungary: online; Slovenia: postal survey, Poland: personal interviews). Occurrence of problems differed significantly by educational level in all the five dimensions (p < 0.001). The inter-country differences persisted after controlling for demographic variables. The estimated EQ-5D-3L index CEE norms with UK tariffs for age groups 18-24, 25-34, 35-44, 45-54, 55-64, 65-74 and 75 + were 0.911, 0.912, 0.871, 0.817, 0.762, 0.743 and 0.636 for males and 0.908, 0.888, 0.867, 0.788, 0.752, 0.68 and 0.584 for females, respectively. Estimates were provided also using Polish, European and Slovenian value sets. CONCLUSIONS: Besides gender and age, education should be considered during the design and interpretation of quality-of-life studies in CEE. The estimated regional EQ-5D-3L population norm may be used as a benchmark by CEE countries with lack of local dataset. However, the substantial inter-country differences in health status and scarcity of data over age 65 call for harmonized country-specific EQ-5D-3L population norm studies in the CEE region.