In search of respect and continuity of care: Hungarian women's experiences with midwifery-led, community birth.

INTRODUCTION: To describe and compare intervention rates and experiences of respectful care when Hungarian women opt to give birth in the community. METHODS: We conducted a cross-sectional online survey (N = 1257) in 2014. We calculated descriptive statistics comparing obstetric procedure rates, respectful care indicators, and autonomy (MADM scale) across four models of care (public insurance; chosen doctor or chosen midwife in the public system; private midwife-led community birth). We used an intention-to-treat approach. After adjusting for social and clinical covariates, we used logistic regression to estimate the odds of obstetric procedures and disrespectful care and linear regression to estimate the level of autonomy (MADM scale). FINDINGS: In the sample, 99 (7.8%) saw a community midwife for prenatal care. Those who planned community births had the lowest rates of cesarean at 9.1% (public: 30.4%; chosen doctor: 45.2%; chosen midwife 16.5%), induced labor at 7.1% (public: 23.1%; chosen doctor: 26.0%; chosen midwife: 19.4%), and episiotomy at 4.44% (public: 62.3%; chosen doctor: 66.2%; chosen midwife: 44.9%). Community birth clients reported the lowest rates of disrespectful care at 25.5% (public: 64.3%; chosen doctor: 44.3%; chosen midwife: 38.7%) and the highest average MADM score at 31.5 (public: 21.2; chosen doctor: 25.5; chosen midwife: 28.6). In regression analysis, community midwifery clients had significantly reduced odds of cesarean (0.35, 95% CI 0.16-0.79), induced labor (0.27, 95% CI 0.11-0.67), episiotomy (0.04, 95% CI 0.01-0.12), and disrespectful care (0.36, 95% CI 0.21-0.61), while also having significantly higher average MADM scores (5.71, 95% CI 4.08-7.36). CONCLUSIONS: Hungarian women who plan to give birth in the community have low obstetric procedure rates and report greater respect, in line with international data on the effects of place of birth and model of care on experiences of perinatal care.

Robot-assisted surgery and artificial intelligence-based tumour diagnostics: social preferences with a representative cross-sectional survey.

BACKGROUND: The aim of this study was to assess social preferences for two different advanced digital health technologies and investigate the contextual dependency of the preferences. METHODS: A cross-sectional online survey was performed among the general population of Hungary aged 40 years and over. Participants were asked to imagine that they needed a total hip replacement surgery and to indicate whether they would prefer a traditional or a robot-assisted (RA) hip surgery. To better understand preferences for the chosen method, the willingness to pay (WTP) method was used. The same assessment was conducted for preferences between a radiologist's and AI-based image analysis in establishing the radiological diagnosis of a suspected tumour. Respondents' electronic health literacy was assessed with the eHEALS questionnaire. Descriptive methods were used to assess sample characteristics and differences between subgroups. Associations were investigated with correlation analysis and multiple linear regressions. RESULTS: Altogether, 1400 individuals (53.7% female) with a mean age of 58.3 (SD = 11.1) years filled in the survey. RA hip surgery was chosen by 762 (54.4%) respondents, but only 470 (33.6%) chose AI-based medical image evaluation. Those who opted for the digital technology had significantly higher educational levels and electronic health literacy (eHEALS). The majority of respondents were willing to pay to secure their preferred surgical (surgeon 67.2%, robot-assisted: 68.8%) and image assessment (radiologist: 70.9%; AI: 77.4%) methods, reporting similar average amounts in the first (p = 0.677), and a significantly higher average amount for radiologist vs. AI in the second task (p = 0.001). The regression showed a significant association between WTP and income, and in the hip surgery task, it also revealed an association with the type of intervention chosen. CONCLUSIONS: Individuals with higher education levels seem to accept the advanced digital medical technologies more. However, the greater openness for RA surgery than for AI image assessment highlights that social preferences may depend considerably on the medical situation and the type of advanced digital technology. WTP results suggest rather firm preferences in the great majority of the cases. Determinants of preferences and real-world choices of affected patients should be further investigated in future studies.

Validation of the Musculoskeletal Health Questionnaire in a general population sample: a cross-sectional online survey in Hungary.

BACKGROUND: The Versus Arthritis Musculoskeletal Health Questionnaire (MSK-HQ) measures symptom severity and health-related quality of life (HRQoL) of people with musculoskeletal (MSK) conditions. We aimed to test the psychometric properties of the MSK-HQ among the general adult population and identify the determinants of MSK-HQ states. In addition, we aimed to explore the relationship between MSK-HQ and standard well-being measurement tools. METHODS: The translation proccess of the MSK-HQ into Hungarian followed the standard methods provided by the developer. A cross-sectional online survey was performed in Hungary involving a population normative sample (N = 2004, women: 53.1%; mean age: 48.3, SD = 16.6 years). Socio-demographic characteristics and self-reported MSK disorders were recorded. Alongside the MSK-HQ, standard measures of HRQoL (EQ-5D-5L), physical functioning (HAQ-DI) and well-being (ICECAP-A/O, WHO-5, Happiness VAS) were applied. Clinical and convergent validity were assessed by subgroup comparisons (Mann-Whitney-U and Kruskal-Wallis tests) and Spearman's rank correlations. Internal consistency was assessed by Cronbach's alpha. Test-retest reliability (N = 50) was evaluated by intraclass correlation coefficient (ICC). Predictors of MSK-HQ were analysed by ordinary least square multiple regressions. RESULTS: The mean MSK-HQ index score was 44.1 (SD = 9.9). MSK-HQ scores were significantly lower in subgroups with self-reported MSK disorders. Correlations were strong between MSK-HQ and EQ-5D-5L (0.788), EQ VAS (0.644) and HAQ-DI (-0.698) and moderate with the well-being measures (p < 0.05). Cronbach's alpha was 0.924 and ICC was 0.936 (p < 0.05). Being a man, living in the capital, having higher income and education were positively associated with MSK-HQ scores. CONCLUSIONS: This is the first study to prove the validity and reliability of the MSK-HQ among the general public. The impact of socio-demographic characteristics on MSK-HQ scores deserves consideration in clinical studies.

Development of Population Tariffs for the ICECAP-A Instrument for Hungary and their Comparison With the UK Tariffs.

OBJECTIVES: The ICEpop CAPability measure for Adults (ICECAP-A) was developed to assess the capability well-being of adults for use in economic evaluations. Currently, ICECAP-A tariffs are available only for the UK population. The objectives of this study were to develop a Hungarian tariff set for the ICECAP-A instrument and to explore intercountry differences between the Hungarian and the UK value sets. METHODS: A survey was conducted by computer-assisted personal interviews on a sample representative of the Hungarian adult population (N = 1000) to elicit their preferences regarding ICECAP-A attributes with the use of a best-worst scaling choice task. A latent class multinomial logit model with continuous variance scale was used to estimate the weights for each of the 4 capability levels of all 5 ICECAP-A attributes, namely, attachment, stability, achievement, enjoyment, and autonomy. RESULTS: The model identified 2 preference classes with approximately equal share. The first class had a stronger relative preference for autonomy and achievement, whereas the second class had a strong preference for attachment. Multivariate analysis of the classes revealed that women, pensioners, people who are married or living in a partnership, and people with poorer health status are characteristics associated with the latter class membership (preference for attachment). Population tariffs were estimated from the model. Overall, attachment was found to be the most important attribute, followed by stability, enjoyment, achievement, and autonomy. CONCLUSIONS: Hungarian tariffs are largely consistent with those found for the United Kingdom; nevertheless, autonomy seems to be less important in Hungary compared with the United Kingdom.

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.

Examining obstetric interventions and respectful maternity care in Hungary: Do informal payments for continuity of care link to quality?

BACKGROUND: In Hungary, 60% of women pay informally to secure continuity with a "chosen" provider for prenatal care and birth. It is unclear if paying informally influences quality of maternity care. This study examined associations between incentivized continuity care models and obstetric procedures and respectful care. METHODS: This is a cross-sectional survey of a representative sample of Hungarian women (N = 589) in 2014. We calculated descriptive statistics comparing experiences among women who paid informally for continuity with a chosen provider with those who received care in the public health system. After adjusting for social and clinical covariates, we used logistic regression to estimate the odds of obstetric procedures and disrespectful care and linear regression to estimate the level of autonomy (MADM scale). RESULTS: Of women in our sample, 317 (53%) saw a chosen doctor, 68 (11%) a chosen midwife, and 204 (33%) had care in the public system. Women who paid an obstetrician informally had the highest rates of cesarean (49.5%), induction of labor (31.2%), and epidural (15%), and reported lower rates of disrespectful care (41%) compared to public care (64%). Paying for continuity with an obstetrician significantly predicted cesarean (aOR 1.61 [95%CI 1.00-2.58]), episiotomy (2.64, [1.39-5.03]), and epidural (3.15 [1.07-9.34]), but not induction of labor (1.59 [0.99-2.57]). Informal payment continuity models predicted increased autonomy scores (doctor: 3.97, 95% CI 2.39-5.55; midwife: 7.37, 95% CI 5.36-9.34) and reduced odds of disrespectful care. There were no differences in the prevalence of scheduled cesareans or inductions performed without a medical indication. CONCLUSIONS: Continuity models secured with informal payments significantly increased both women's experience of respectful care and rates of obstetric procedures. Intervention rates exceed global standards, and women do not choose elective procedures to preserve continuity.

Acceptable health and ageing: results of a cross-sectional study from Hungary.

BACKGROUND: We aimed to investigate the acceptability of imperfect health states in relation to age in Hungary and analyse its determinants. Results are contrasted to age-matched actual population health scores and to findings from a previous study in The Netherlands. METHODS: A cross-sectional online survey was performed. The same survey questions were applied as in a previous study in The Netherlands in order to enable inter-country comparisons. The descriptive system of the EQ-5D-3L health status questionnaire was used to assess the acceptability of moderate and severe health problems at ages from 30 to 80 by 10-year age-groups. Descriptive statistics were performed and linear regression analysis was used to investigate the determinants of acceptability. RESULTS: Altogether 9281 (female 32.8%) were involved with mean age 36.0 years and EQ-5D-3L index score of 0.852 (SD 0.177). Acceptability of health problems increased with age, differed per health domain and with severity of the problems. Except for 'Self-care', moderate health problems were acceptable by the majority from age 70 and acceptability scores were lower than EQ-5D-3L population norms from that age. The lowest average acceptability age was found in the 'Anxiety/depression' and dimension the highest in the 'Self-care' dimension. Respondents' age, current health, and lifestyle were significant determinants (R2: 0.041-0.130). With a few minor exceptions in some health dimensions, acceptability levels and patterns were strikingly similar to the Dutch findings. CONCLUSION: In Hungary, acceptability of health problems increases with age and the majority found severe problems never acceptable. Views on acceptability of health problems seem to be fairly generalizable across European countries with different health and economic indicators.

Capability of well-being: validation of the Hungarian version of the ICECAP-A and ICECAP-O questionnaires and population normative data.

PURPOSE: We aimed to develop and assess the psychometric characteristics of the Hungarian language version of two well-being capability measures, the ICEpop CAPability measure for Adults/Older people (ICECAP-A/-O), and to establish population norms. METHODS: A cross-sectional survey was performed involving a representative sample of the Hungarian population. Socio-demographic characteristics, the use and provision of informal care were recorded. The Minimum European Health Module (MEHM), EQ-5D-5L, WHO-5 well-being index, happiness and life satisfaction visual analogue scale (VAS), Satisfaction with Life Scale (SWLS) measures were applied alongside the ICECAP-A (age-group 18-64) and ICECAP-O (age-group 65+). RESULTS: Altogether 1568 and 453 individuals completed the ICECAP-A/-O questionnaires, respectively. Cronbach's alpha was 0.86 for both measures (internal consistency). Subgroup analyses showed positive associations between ICECAP-A/-O scores and marital status, employment, income, health status (MEHM) and informal care use (construct validity). Pearson correlations were strong (r > 0.5; p < 0.01) between ICECAP-A/-O indexes and EQ-5D-5L, WHO-5, happiness and satisfaction VAS and SWLS scores (convergent validity). The age, education, and marital status were no longer significant in the multiple regression analysis. Test-retest average (SD) scores were 0.88 (0.11) and 0.89 (0.10) for the ICECAP-A, and equally 0.86 (0.09) for the ICECAP-O (reliability). CONCLUSION: This is the first study to provide ICECAP-A/-O population norms. Also, it is the first to explore associations with WHO-5 well-being index which, alongside the MEHM measures, enable estimates from routinely collected international health statistics. The Hungarian ICECAP-A/-O proved to be valid and reliable measurement tools. Socio-demographic characteristics had minor or no impact on ICECAP-A/-O. Other influencing factors deserve further investigation in future research.

Exploring eHealth Literacy and Patient-Reported Experiences With Outpatient Care in the Hungarian General Adult Population: Cross-Sectional Study.

BACKGROUND: Digital health, which encompasses the use of information and communications technology in support of health, is a key driving force behind the cultural transformation of medicine toward people-centeredness. Thus, eHealth literacy, assisted by innovative digital health solutions, may support better experiences of care. OBJECTIVE: The purpose of this study is to explore the relationship between eHealth literacy and patient-reported experience measures (PREMs) among users of outpatient care in Hungary. METHODS: In early 2019, we conducted a cross-sectional survey on a large representative online sample recruited from the Hungarian general population. eHealth literacy was measured with the eHealth Literacy Scale (eHEALS). PREMs with outpatient care were measured with a set of questions recommended by the Organisation for Economic Co-operation and Development (OECD) for respondents who attended outpatient visit within 12 months preceding the survey. Bivariate relationships were explored via polychoric correlation, the Kruskal-Wallis test, and chi-square test. To capture nonlinear associations, after controlling covariates, we analyzed the relationship between eHEALS quartiles and PREMs using multivariate probit, ordinary least squares, ordered logit, and logistic regression models. RESULTS: From 1000 survey respondents, 666 individuals (364 females, 54.7%) were included in the study with mean age of 48.9 (SD 17.6) years and mean eHEALS score of 29.3 (SD 4.9). Respondents with higher eHEALS scores were more likely to understand the health care professionals' (HCPs') explanations (χ29=24.2, P=.002) and to be involved in decision making about care and treatment (χ29=18.2, P=.03). In multivariate regression, respondents with lowest (first quartile) and moderately high (third quartile) eHEALS scores differed significantly, where the latter were more likely to have an overall positive experience (P=.02) and experience fewer problems (P=.02). In addition, those respondents had better experiences in terms of how easy it was to understand the HCPs' explanations (P<.001) and being able to ask questions during their last consultation (P=.04). Patient-reported experiences of individuals with highest (fourth quartile) and lowest (first quartile) eHEALS levels did not differ significantly in any items of the PREM instrument, and neither did composite PREM scores generated from the PREM items (P>.05 in all models). CONCLUSIONS: We demonstrated the association between eHealth literacy and PREMs. The potential patient-, physician-, and system-related factors explaining the negative experiences among people with highest levels of eHealth literacy warrant further investigation, which may contribute to the development of efficient eHealth literacy interventions. Further research is needed to establish causal relationship between eHealth literacy and patient-reported experiences.

Adaptation or recovery after health shocks? Evidence using subjective and objective health measures.

In this paper, we analyse the effect of an onset of a health shock on subjective survival probability and compare it with objective survival probability and self-reported health measures. In particular, we are interested in whether expectations of people respond to health shocks and whether these follow the evolution of objective life expectations and self-reported health measures over time. Using longitudinal data from the Health and Retirement Study, we estimate fixed effects models of adaptation for the objective and subjective survival probabilities and for some self-reported health measures. The results show that after cancer diagnosis, conditional on surviving, both the objective and subjective longevity and self-reported health measures drift back to the before diagnosis trajectories. For stroke and heart attack, in spite of their persistent negative effect on survival, subjective life expectations and self-reported health measures seem to indicate only a transient effect of the health shock. The differences between the objective and subjective measures are in line with the concept of adaptation. We discuss the policy implications of our results.

Subjective health expectations of patients with age-related macular degeneration treated with antiVEGF drugs.

BACKGROUND: Subjective expectations regarding future health may influence patients' judgement of current health and treatment effects, as well as adherence to therapies in chronic diseases. We aimed to explore subjective expectations on longevity and future health-related quality of life (HRQOL) of patients with age-related macular degeneration (AMD) treated with antiVEGF injections and analyse the influencing factors. METHODS: Consecutive AMD patients in two ophthalmology centres were included. Demographics, clinical characteristics and informal care utilisation were recorded. Current health was evaluated by the EQ-5D generic health status questionnaire and time trade-off (TTO) methods. Happiness was measured on a visual analogue scale (VAS). Subjective life-expectancy and expected EQ-5D status at ages 70, 80 and 90 were surveyed. T-test was applied to compare subgroups and Pearson correlations were performed to analyse relationships between variables. RESULTS: One hundred twenty two patients were involved (females 62%) with a mean (SD) age of 75.2 (7.9) years and disease duration of 2.9 (2.5) years. The majority were in AREDS-4 state, the better eye's ETDRS was 64.7 (15.4). EQ-5D and TTO revealed moderate deterioration of health (0.66 vs. 0.72, p = 0.131), happiness VAS was 6.3 (2.2). Correlation between EQ-5D and ETDRS was moderate (R = 0.242, p < 0.05) and having both versus one eye in AREDS-4 resulted lower TTO (0.68 vs. 0.83; p = 0.013). Subjective life-expectancy did not differ significantly from statistical life-expectancy and had no significant impact on TTO. The self-estimated mean EQ-5D score was 0.60, 0.40 and 0.24 for ages 70, 80 and 90 which is lower than the population norm of age-groups 65-74, 75-84 and 85+ (0.77, 0.63 and 0.63, respectively). Age, gender, current EQ-5D, need for informal care and happiness were deterministic factors of subjective health expectations. CONCLUSION: AMD patients with antiVEGF treatment have comparable HRQOL as the age-matched general public but expect a more severe deterioration of health with age. Older patients with worse HRQOL have worse subjective expectations. Exploring patients' health expectations provides an opportunity for ophthalmologists to correct misperceptions and improve the quality of AMD care. Further studies should provide evidences on the relationship between subjective expectations and actual health outcomes, and on its impact on patients' AMD-specific health behaviour.

EQ-5D studies in musculoskeletal and connective tissue diseases in eight Central and Eastern European countries: a systematic literature review and meta-analysis.

EQ-5D is becoming the preferred instrument to measure health-state utilities involved in health technology assessment. The objective of this study is to assess the state of EQ-5D research in musculoskeletal disorders in 8 Central and Eastern European countries and to provide a meta-analysis of EQ-5D index scores. Original research articles published in any language between Jan 2000 and Sept 2016 were included, if they reported any EQ-5D outcome from at least two musculoskeletal patients from Austria, Bulgaria, the Czech Republic, Hungary, Poland, Romania, Slovakia, or Slovenia. Risk of bias was assessed with the Cochrane Collaboration's tool. Twenty-nine articles (5992 patients) were included on rheumatoid arthritis (n = 7), osteoporosis (n = 5), chronic pain (n = 5), osteoarthritis (n = 4), ankylosing spondylitis (n = 2), psoriatic arthritis (n = 2), total hip replacement (n = 2), and scleroderma (n = 2). Low back pain was under-represented, while studies in neck pain, systemic lupus erythematosus, gout, and childhood disorders were lacking. EQ-5D index scores were reported in 24 studies, while the version of the instrument and the value-set was not specified in 41% and 46% of the articles, respectively. Meta-analysis was performed on 24 disease states involving 6876 observation points. Intervention effect was reported in 22 subgroups, out of which risk of bias was low in 41%. This review provides recommendations to improve reporting standards of EQ-5D results and highlights potential areas for future research. Coordinated research in conditions with greatest public health impact as well as a development of a regional value-set could provide locally relevant health-state utilities that are transferable among countries within the region.

Assessing quality of maternity care in Hungary: expert validation and testing of the mother-centered prenatal care (MCPC) survey instrument.

BACKGROUND: Instruments to assess quality of maternity care in Central and Eastern European (CEE) region are scarce, despite reports of poor doctor-patient communication, non-evidence-based care, and informal cash payments. We validated and tested an online questionnaire to study maternity care experiences among Hungarian women. METHODS: Following literature review, we collated validated items and scales from two previous English-language surveys and adapted them to the Hungarian context. An expert panel assessed items for clarity and relevance on a 4-point ordinal scale. We calculated item-level Content Validation Index (CVI) scores. We designed 9 new items concerning informal cash payments, as well as 7 new "model of care" categories based on mode of payment. The final questionnaire (N = 111 items) was tested in two samples of Hungarian women, representative (N = 600) and convenience (N = 657). We conducted bivariate analysis and thematic analysis of open-ended responses. RESULTS: Experts rated pre-existing English-language items as clear and relevant to Hungarian women's maternity care experiences with an average CVI for included questions of 0.97. Significant differences emerged across the model of care categories in terms of informal payments, informed consent practices, and women's perceptions of autonomy. Thematic analysis (N = 1015) of women's responses identified 13 priority areas of the maternity care experience, 9 of which were addressed by the questionnaire. CONCLUSIONS: We developed and validated a comprehensive questionnaire that can be used to evaluate respectful maternity care, evidence-based practice, and informal cash payments in CEE region and beyond.

Treatment preferences of originator versus biosimilar drugs in Crohn's disease; discrete choice experiment among gastroenterologists.

OBJECTIVE: To explore preferences of gastroenterologists for biosimilar drugs in Crohn's disease. MATERIAL AND METHODS: Discrete choice experiment was carried out involving 51 Hungarian gastroenterologists in May 2014. The following attributes were used to describe hypothetical choice sets: 1) type of the treatment (biosimilar/originator), 2) severity of disease, 3) availability of continuous medicine supply, 4) frequency of the efficacy check-ups. Multinomial logit model was used to differentiate between three attitude types: 1) always opting for the originator, 2) willing to consider biosimilar for biological-naïve patients only, 3) willing to consider biosimilar treatment for both types of patients. Conditional logit model was used to estimate the probabilities of choosing a given profile. RESULTS: Men, senior consultants, working in inflammatory bowel disease center and treating more patients were more likely willing to consider biosimilar for biological-naïve patients only. Treatment type (originator/biosimilar) was the most important determinant of choice for patients already treated with biologicals, and the availability of continuous medicine supply in case of biological-naïve patients. The probabilities of choosing the biosimilar with all the benefits offered over the originator under current reimbursement conditions are 89% versus 11% for new patients, and 44% versus 56% for patients already treated with biological. CONCLUSIONS: For gastroenterologist, the continuous medical supply would be one of the major benefits of biosimilars. However, benefits offered in the scenarios do not compensate for the change from the originator to the biosimilar treatment of patients already treated with biologicals.

Discrepancies between the Dermatology Life Quality Index and utility scores.

OBJECTIVE: In many jurisdictions, deterioration in quality of life assessed with Dermatology Life Quality Index (DLQI) is used for medical and reimbursement decisions in various dermatological conditions such as psoriasis. However, utility values for health states defined by the DLQI have not yet been evaluated. Therefore, we aim to estimate utilities for different health states described by the ten items of the DLQI. METHODS: A cross-sectional survey was performed in a convenience sample of the general population. Seven DLQI health states with total scores of 6, 11 and 16 (3-3 and 1 states, respectively) were developed. All of them were different from each other in the number of affected items and severity levels of impairment. The 10-year time trade-off method was used to value health states. RESULTS: Mean utilities elicited by the respondents (n = 308) for the three 6-, three 11- and one 16-point DLQI health states were 0.62-0.75, 0.59-0.66, and 0.56, respectively. In half of the six pairwise comparisons, where health states with the same total DLQI score were compared, significant difference between utilities was found. In eight out of the 15 comparisons between health states with different DLQI scores, utilities were not significantly different. CONCLUSIONS: Utility values for health states with identical DLQI total score may significantly vary. This result might be generalisable to various patient populations, in which the DLQI is used; nevertheless, further research is needed. The discrepancies between DLQI scores and utilities might have an impact on medical and reimbursement decisions as they make the utility gain from treatment uncertain.

EQ-5D in Central and Eastern Europe: 2000-2015.

OBJECTIVE: Cost per quality-adjusted life year data are required for reimbursement decisions in many Central and Eastern European (CEE) countries. EQ-5D is by far the most commonly used instrument to generate utility values in CEE. This study aims to systematically review the literature on EQ-5D from eight CEE countries. METHODS: An electronic database search was performed up to 1 July 2015 to identify original EQ-5D studies from the countries of interest. We analysed the use of EQ-5D with respect to clinical areas, methodological rigor, population norms and value sets. RESULTS: We identified 143 studies providing 152 country-specific results with a total sample size of 81,619: Austria (n = 11), Bulgaria (n = 6), Czech Republic (n = 18), Hungary (n = 47), Poland (n = 51), Romania (n = 2), Slovakia (n = 3) and Slovenia (n = 14). Cardiovascular (21 %), neurologic (17 %), musculoskeletal (15 %) and endocrine, nutritional and metabolic diseases (13 %) were the most frequently studied clinical areas. Overall, 112 (78 %) of the studies reported EQ VAS results and 86 (60 %) EQ-5D index scores, of which 27 (31 %) did not specify the applied tariff. Hungary, Poland and Slovenia have population norms. Poland and Slovenia also have a national value set. CONCLUSIONS: Increasing use of EQ-5D is observed throughout CEE. The spread of health technology assessment activities in countries seems to be reflected in the number of EQ-5D studies. However, improvement in informed use and methodological quality of reporting is needed. In jurisdictions where no national value set is available, in order to ensure comparability we recommend to apply the most frequently used UK tariff. Regional collaboration between CEE countries should be strengthened.

[Ten-year fracture risk by FRAX(®) of women with osteoporosis attending osteoporosis care in Hungary]. / A szakellátásban megjeleno osteoporosisos nok 10 éves csonttöréskockázata a FRAX(®) alapján.

INTRODUCTION: Identification of patients with high fracture risk is a key-point in osteoporosis care. AIM: To assess the fracture risk among osteoporotic women attending osteoporosis care in Hungary. METHOD: A cross-sectional survey was conducted in 2009 in 11 centres among women with osteoporosis aged ≥50 years. Main risk factors were recorded and 10-year fracture risk was calculated using the FRAX(®) for Hungary. Health status was assessed by EQ VAS. RESULTS: 1301 patients with mean age of 68.5 (SD = 8.3) years and EQ VAS of 62.0 (SD = 17.2) participated, of whom 690 (53.0%) have already had previous fracture. Major osteoporotic and hip fracture FRAX(®) scores were 20.1 (SD = 13.9) and 10.6 (SD = 12.5), respectively (by 10-year age groups, mean: 18.5/9.3; 16.2/6.7; 23/13.5; 28.9/18.3). Patients with previous fracture had significantly higher scores (p<0.05). CONCLUSIONS: Similar rate of patients attend osteoporosis care for primary and secondary prevention. FRAX(®) score was higher than 7% in the majority of patients. The findings provide inputs for cost-effectiveness analyses and development of intervention thresholds in Hungary.

[DISEASE BURDEN OP DUCHENNE MUSCULAR DYSTROPHY PATIENTS AND THEIR CAREGIVERS]. / DUCHENNE-FÉLE IZOMDISZTRÓFIÁVAL ÉLO BETEGEK ÉS GONDOZÓIK BETEGSÉGTERHEI.

BACKGROUND AND PURPOSE: Data on the disease burden of Duchenne Muscular Dystrophy are scarce in Hungary. The aim of this study was to assess patients' and their caregivers' health related quality of life and healthcare utilisations. METHODS: A cross sectional survey was performed as part of the European BURQOL-RD project. The EQ-5D-5L and Barthel Index questionnaires were applied, health care utilisations and patients' informal carers were surveyed. RESULTS: One symptomatic female carer, 50 children (boys 94%) and six adult patients (five males) participated in the study, the latter two subgroups were included in the analysis. The average age was 9.7 (SD = 4.6) and 24.3 (SD = 9.8) years, respectively. Median age at time of diagnosis was three years. The average EQ-5D score among children and adults was 0.198 (SD = 0.417) and 0.244 (SD = 0.322), respectively, the Barthel Index was 57.6 (SD = 29.9) and 53.0 (SD = 36.5). Score of satisfaction with healthcare (10-point Likert-scale) was mean 5.3 (SD = 2.1) and 5.3 (SD = 2.9). 15 children were hospitalised in the past 12 months for mean 12.9 (SD = 24.5) days. Two patients received help from professional carer. 25 children (mean age 11.1, SD = 4.4 years) were helped/supervisied by principal informal carer (parent) for mean 90.1 (SD = 44.4) hours/week and further family members helped in 21 cases. Correlation between EQ-5D and Barthel Index was strong and significant (0.731; p < 0.01) as well as with informal care time (-0.770; p < 0.01), but correlation with satisfaction with health care was not significant (EQ-5D: 0.241; Barthel Index: 0.219; informal care: -0.142). CONCLUSION: Duchenne muscular dystrophy leads to a significant deterioration in the quality of life of patients. Parents play outstanding role in the care of affected children. This study is the first in the Central and Eastern European region that provides quality of life data in this rare disease for further health economic studies.

[Health status of the Hungarian population between 2000-2010]. / A magyar lakosság egészségi állapota 2000 és 2010 között.

INTRODUCTION: So far, the latest survey which used the EQ-5D questionnaire to measure the health status of the Hungarian population was carried out in 2000. AIM: To explore the health state of the Hungarian population by socio-demographic characteristics, and to compare it with the results from 2000. METHOD: As part of an international research project, a cross-sectional, online survey was carried out among the general population in 2010 using the EQ-5D-3L questionnaire. RESULTS: In total, 2281 respondents (female: 62.3%) completed the questionnaire with an average age of 40.8 years. The EQ-5D score ranged from 0.902 (in age-group 18-24) to 0.795 (65+). The authors found significant association between the EQ-5D score and all the socio-demographic variables (gender, age, education, income) included in the regression model (F(4,1967)=35.12, p=0.000). The results did not differ significantly from the health survey in 2000, except for the youngest population group (age 18-24), where significantly lower scores were found in the sample. CONCLUSIONS: While life expectance increased by 3 years between 2000 and 2010, the health status of the Hungarian population did not change significantly, and might even decreased among young adults in fact. Inequalities in health status by income and education remain significant. In international comparison, the health status of the Hungarian population remains among the worst ones.

[Cystic fibrosis -- disease burden and health-related quality of life of patients and their caregivers: results of the European BURQOL-RD survey in Hungary]. / Cystás fibrosissal élo betegek és gondozóik életminosége és betegségterhei: a BURQOL-RD európai felmérés magyarországi eredményei.

INTRODUCTION: Data on disease burden of cystic fibrosis in Hungary are scarce. AIM: To assess quality of life and resource utilisations of patients with cystic fibrosis. METHOD: In a cross-sectional survey (BURQOL-RD project), the EQ-5D-5L questionnaire was applied and healthcare utilisations were retrospectively surveyed. RESULTS: 110 patients participated in the study (age-groups, year: 0-13, N = 48; 14-17, N = 12; ≥18, N = 50), median age at the diagnosis was 1 year. EQ-5D-5L score in age-groups 18-24 and 25-34 was significantly lower than in the general population (p<0.05). 75 patients (68%) attended pulmonology care, 55 patients (50%) were hospitalised in the past 6 and 12 months, respectively, and 57 patients (52%) were taking dornase alpha. Five adult patients (10%) received help from non-professional caregiver. CONCLUSIONS: Cystic fibrosis leads to significant deterioration of quality of life. This study is the first from the Central Eastern European region that provides basic inputs for further health economic evaluations of cystic fibrosis care.