Assessment of health state utilities in dermatology: an experimental time trade-off value set for the dermatology life quality index.

BACKGROUND: Dermatology Life Quality Index (DLQI) scores are used in many countries as access and reimbursement criteria for costly dermatological treatments. In this study we examined how time trade-off (TTO) utility valuations made by individuals from the general population are related to combinations of DLQI severity levels characterizing dermatologically relevant health states, with the ultimate purpose of developing a value set for the DLQI. METHODS: We used data from an online cross-sectional survey conducted in Hungary in 2020 (n = 842 after sample exclusions). Respondents were assigned to one of 18 random blocks and were asked to provide 10-year TTO valuations for the corresponding five hypothetical health states. To analyze the relationship between DLQI severity levels and utility valuations, we estimated linear, censored, ordinal, and beta regression models, complemented by two-part scalable models accommodating heterogeneity effects in respondents' valuation scale usage. Successive severity levels (0-3) of each DLQI item were represented by dummy variables. We used cross-validation methods to reduce the initial set of 30 dummy variables and improve model robustness. RESULTS: Our final, censored linear regression model with 13 dummy variables had R2 = 0.136, thus accounting for 36.9% of the incremental explanatory power of a maximal (full-information) benchmark model (R2 = 0.148) over the uni-dimensional model (R2 = 0.129). Each DLQI item was found to have a negative effect on the valuation of health states, yet this effect was largely heterogeneous across DLQI items, and the relative contribution of distinctive severity levels also varied substantially. Overall, we found that the social/interpersonal consequences of skin conditions (in the areas of social and leisure activities, work and school, close personal relationships, and sexuality) had roughly twice as large disutility impact as the physical/practical aspects. CONCLUSIONS: We have developed an experimental value set for the DLQI, which could prospectively be used for quantifying the quality-adjusted life years impact of dermatological treatments and serve as a basis for cost-effectiveness analyses. We suggest that, after validation of our main results through confirmatory studies, population-specific DLQI value sets could be developed and used for conducting cost-effectiveness analyses and developing financing guidelines in dermatological care.

Parallel Valuation of the EQ-5D-3L and EQ-5D-5L by Time Trade-Off in Hungary.

OBJECTIVES: The wording of the Hungarian EQ-5D-3L and EQ-5D-5L descriptive systems differ a great deal. This study aimed to (1) develop EQ-5D-3L and EQ-5D-5L value sets for Hungary from a common sample, and (2) compare how level wording affected valuations. METHODS: In 2018 to 2019, 1000 respondents, representative of the Hungarian general population, completed composite time trade-off tasks. Pooled heteroscedastic Tobit models were used to estimate value sets. Value set characteristics, single-level transition utilities from adjacent corner health states, and mean transition utilities for all possible health states were compared between the EQ-5D-3L and EQ-5D-5L. RESULTS: Health utilities ranged from -0.865 to 1 for the EQ-5D-3L and -0.848 to 1 for the EQ-5D-5L. The relative importance of the 5 EQ-5D-5L dimensions was as follows: mobility, pain/discomfort, self-care, anxiety/depression, and usual activities. A similar preference ranking was observed for the EQ-5D-3L with self-care being more important than pain/discomfort. The EQ-5D-5L demonstrated lower ceiling effects (range of utilities for the mildest states: 0.900-0.958 [3L] vs 0.955-0.965 [5L]) and better consistency of mean transition utilities across the range of scale. Changing "confined to bed" (3L) to "unable to walk" (5L) had a large positive impact on utilities. Smaller changes with more negative wording in the other dimensions (eg, "very much anxious/feeling down a lot" [3L] vs "extremely anxious/depressed" [5L]) had a modest negative impact on utilities. CONCLUSION: This study developed value sets of the EQ-5D-3L and EQ-5D-5L for Hungary. Our findings contribute to the understanding of how the wording of descriptive systems affects the estimates of utilities.

An idiographic approach to Idiopathic Environmental Intolerance attributed to Electromagnetic Fields (IEI-EMF) Part II. Ecological momentary assessment of three individuals with severe IEI-EMF.

IEI-EMF refers to a self-reported sensitivity characterized by attribution of non-specific physical symptoms to exposure to weak EMFs. The majority of empirical results do not support the existence of a causal relationship between EMF and IEI-EMF. However, this conclusion was drawn from environmental and experimental studies that are not without methodological limitations. In the current study, as part of a complex biopsychosocial approach, an ecological momentary assessment (EMA) protocol was applied for the investigation of the temporal relationship between actual radio frequency (RF) EMF exposure and IEI-EMF, at the individual level. Continuous measurement of autonomic variables by holter electrocardiogram (ECG) monitors and the ambient RF EMF by personal dosimeters, as well as repeated (8/day) paper-and-pencil assessments of momentary internal states (symptoms, mood, perceived EMF intensity) and situational factors was conducted for 21 days with the participation of three individuals with severe IEI-EMF. Temporal relationships were examined by time series analyses. For two participants, the results did not support the association between the suspected EMF frequency range(s) and symptom reports. Nevertheless, the results revealed a reverse association with respect to another frequency range (GSM900 downlink), which contradicts the IEI-EMF condition. Autonomic activation related findings were inconsistent. For the third participant, the claimed association was partly supported, both for symptom reports and autonomic reactions (UMTS downlink, total RF; RMS values). The findings of this study suggest that IEI-EMF does not have a unitary aetiology. For certain individuals, a biophysical background cannot be excluded, whereas no such underlying factor appears to be at work for others. EMA is a useful method for the investigation of the aetiology of IEI-EMF.

Value Set for the EQ-5D-Y-3L in Hungary.

BACKGROUND: The Hungarian health technology assessment guidelines recommend the use of the EuroQol instrument family in quality-adjusted life-year calculations. However, no national value set exists for the EQ-5D-Y-3L or any other youth-specific instrument. OBJECTIVE: This study aims to develop a national value set of the EQ-5D-Y-3L for Hungary based on preferences of the general adult population. METHODS: This study followed the international valuation protocol for the EQ-5D-Y-3L. Two independent samples, representative of the Hungarian general adult population in terms of age and sex were recruited to complete online discrete choice experiment (DCE) tasks and composite time trade-off (cTTO) tasks by computer-assisted personal interviews. Adults valued hypothetical EQ-5D-Y-3L health states considering the health of a 10-year-old child. DCE data were modelled using a mixed logit model with random-correlated coefficients. Latent DCE utility estimates were mapped onto mean observed cTTO utilities using ordinary least squares regression. RESULTS: Overall, 996 and 200 respondents completed the DCE and cTTO surveys, respectively. For each domain, the value set resulted in larger utility decrements with more severe response levels. The relative importance of domains by level 3 coefficients was as follows: having pain or discomfort > feeling worried, sad or unhappy > mobility > doing usual activities > looking after myself. Overall, 12.3% of all health states had negative utilities in the value set, with the worst health state having the lowest predicted utility of - 0.485. CONCLUSION: This study developed a national value set of the EQ-5D-Y-3L for Hungary. The value set enables to evaluate the cost utility of health technologies for children and adolescents based on societal preferences in Hungary.

Person- and job-specific factors of intuitive decision-making in clinical practice: results of a sample survey among Hungarian physicians and nurses.

Objective: To assess the prevalence of intuitive decision-making (IDM) among health care practitioners (HCPs) and explore its person- and job-specific factors. Design and Outcome Measures: We used on-line survey data from a cross-sectional sample of Hungarian physicians and nurses (N = 460) to assess their reliance on IDM. In a second survey we asked physicians (N = 104) to rate medical specialties on dimensions of 'emergency' (necessity of making instantaneous decisions in unforeseeable situations) and 'complexity' (necessity of considering multiple perceptual and diagnostic aspects of patients' health condition along with diverse treatment options). Results: Altogether 40% of participants reported ever relying on IDM. Using logistic regression analysis, we found the estimated probability of IDM was 0.24 greater for physicians than for nurses, 0.10 greater for females than for males, and 0.11 greater for advanced level HCPs than for novices. Reaching expert level further increased (by 0.31) the probability of IDM for physicians, but not for nurses. Concerning physicians, practicing in a medical specialty of 'high likelihood of emergency' or 'high complexity' increased the probability of IDM by 0.25 and 0.23; the same effects for nurses were 0.20 and 0.07. We found some (inconclusive) evidence for education positively influencing HCPs' propensity for IDM. Additionally, we performed content analysis of participants' free-text answers to explore the psychological background of IDM instances. HCPs educated in the subject of IDM were found more disposed to perform or request further medical investigation, less prone to deviate from medical protocols, apter to reflect on their mental processes, and more inclined to rely on a large scope of information for their decisions. Conclusions: The associations between job- and person-specific factors and HCPs' propensity for IDM may have implications for their training and allocation in the health care system. Education has great potential for enhancing the quality of IDM in clinical practice.

Did You Get What You Wanted? Patient Satisfaction and Congruence Between Preferred and Perceived Roles in Medical Decision Making in a Hungarian National Survey.

OBJECTIVES: In a growing number of countries, patient involvement in medical decisions is considered a cornerstone of broader health policy agendas. This study seeks to explore public preferences for and experiences with participation in treatment decisions in Hungary. METHODS: A nationally representative online panel survey was conducted in 2019. Outcome measures included the Control Preferences Scale for the preferred and actual role in the decision, the 9-item Shared Decision Making Questionnaire, and a Satisfaction With Decision numeric rating scale. RESULTS: A total of 1000 respondents participated in the study, 424 of whom reported having had a treatment decision in the preceding 6 months. Overall, 8%, 18%, 51%, 19%, and 4% of the population preferred an active, semiactive, shared, semipassive, and passive role in decision making, respectively. Corresponding rates for perceived role were as follows: 9%, 15%, 35%, 26%, and 15%. Preferred and perceived roles matched for 52% of the population, whereas 32% preferred more and 16% less participation. Better health status, attaining role congruence, and higher 9-item Shared Decision Making Questionnaire scores were positively associated with satisfaction, accounting for 32% of the variation in Satisfaction With Decision scores (P < .05). CONCLUSIONS: This study represents the first national survey on decisional roles in healthcare in Hungary and, more broadly, in Central and Eastern Europe. Shared decision making is the most preferred decisional role in Hungary; nevertheless, there is still room to improve patient involvement in decision making. It seems that patient satisfaction may be improved through tailoring the decisional role to reflect patients' preferences and through practices that encourage shared decision making.

Patient and general population values for luminal and perianal fistulising Crohn's disease health states.

BACKGROUND: In patients with Crohn's disease (CD), luminal disease activity paralleled by perianal fistulas may seriously impair health-related quality of life (HRQoL). Health utility values are not available from patients with CD that reflect the health loss associated with both luminal and perianal CD. OBJECTIVE: To generate utilities for luminal and concomitant perianal fistulising CD health states directly from patients and from members of the general public. METHODS: A cross-sectional survey was undertaken enrolling CD patients and a convenience sample of members of the general population. Respondents were asked to evaluate four common CD heath states [severe luminal disease (sCD), mild luminal disease (mCD), severe luminal disease with active perianal fistulas (sPFCD), and mild luminal disease with active perianal fistulas (mPFCD)] by 10-year time trade-off (TTO). In addition, patients assessed their current HRQoL by the TTO method. RESULTS: Responses of 206 patients (40.8% with perianal fistulas) and 221 members of the general population were analysed. Mean ± SD utilities among patients for sPFCD, sCD, mPFCD and mCD states were 0.69 ± 0.33, 0.73 ± 0.31, 0.80 ± 0.29 and 0.87 ± 0.26. Corresponding values in the general public were: 0.59 ± 0.31, 0.65 ± 0.29, 0.80 ± 0.26 and 0.88 ± 0.25. Patients with active perianal fistulas, previous non-resection surgeries, and higher pain intensity scores valued their current health as worse (p < 0.05). CONCLUSIONS: TTO is a feasible method to assess HRQoL in patients with perianal fistulising disease, often not captured by health status questionnaires. Utilities from this study are intended to support the optimization of treatment-related decision making in patients with luminal disease paralleled by active perianal fistulas.

Is the DLQI appropriate for medical decision-making in psoriasis patients?

Dermatology Life Quality Index (DLQI) is the most commonly applied measure of health-related quality of life (HRQoL) in psoriasis patients. It is among defining criteria of moderate-to-severe psoriasis and present in treatment guidelines. Our objective was to estimate preference-based HRQoL values (i.e., utilities) for hypothetical health states described by the 10 items of the DLQI in psoriasis patients. Moreover, we compare results to findings of a similar study previously conducted among the general public. A cross-sectional survey was carried out among 238 psoriasis patients. Seven hypothetical DLQI-defined health states with total scores of 6, 11, and 16 (3-3 and 1 states, respectively) were evaluated by time trade-off method. The difference in DLQI scores between hypothetical health states was set at 5 points, as it exceeds the minimal clinically important difference (MCID). Utility scores were found to be homogenous across the seven hypothetical health states (range of means for the 6-point states 0.85-0.91, range of means for the 11-point states 0.83-0.85, and mean of 0.84 for the 16-point state). Overall, mean utilities assessed by psoriasis patients were higher for all seven states compared with the general public (mean difference 0.16-0.28; p < 0.001). In 11 out of the 15 comparisons between health states with DLQI scores differing larger than the MCID, there was no statistically significant difference in utility. Thus, in clinical settings, patients with DLQI scores differing more than the MCID may have identical HRQoL. Improving the definition of moderate-to-severe disease and reconsideration of the DLQI in clinical assessment of psoriasis patients are suggested.

Bleeding out the quality-adjusted life years: evaluating the burden of primary dysmenorrhea using time trade-off and willingness-to-pay methods.

Primary dysmenorrhea (PD), or painful menstruation in the absence of identified uterine pathology, affects 5 to 9 in every 10 reproductive-aged women. Despite its high prevalence, just a few studies with very small patient numbers have focused on health-related quality of life impairment in PD. We aimed to assess health-related quality of life values for a severe and a mild hypothetical PD health state using 10-year time trade-off and willingness-to-pay methods. In 2015, a nationwide convenience sample of women, aged between 18 and 40 years, was recruited using an Internet-based cross-sectional survey in Hungary. Respondents with a known history of secondary dysmenorrhea were excluded. Data on 1836 and 160 women, with and without a history of PD, respectively, were analysed. Mean utility values for the severe and mild health states were 0.85 (median 0.95) and 0.94 (median 1), respectively. Participants were willing to pay a mean of &OV0556;1127 (median &OV0556;161) and &OV0556;142 (median &OV0556;16) for a complete cure from the severe and mild PD health states. Compared with the non-PD group, women with PD valued both health states worse according to willingness to pay (P < 0.05) but similar in the time trade-off. It seems that PD substantially contributes to the quality-adjusted life year loss in this age group, which is comparable with losses from chronic diseases such as type 1 diabetes, asthma, atopic eczema, or chronic migraine. Our findings provide a useful input to cost-effectiveness and cost-benefit analyses of PD treatments.