Disease burden of patients with pemphigus from a societal perspective.

Introduction: Cost-of-illness studies are widely used for healthcare decision-making; however, no such study is available in pemphigus from the societal perspective. The purpose of this analysis was to estimate annual cost-of-illness per patient with pemphigus from a societal perspective. Areas covered: Between 2014 and 2017, a multicenter, cross-sectional study was carried out. Consecutive pemphigus patients aged ≥18 years were recruited at all four university dermatology departments in Hungary. Direct and indirect costs were calculated, including costs for treatments, outpatient visits, hospital admissions, informal care, travel costs and productivity loss. Generalized linear model was used to analyze predictors of costs. Atotal of 109 patients with pemphigus enrolled with amean age of 57.1 (SD 14.8) years. Total cost per pemphigus patient was €3,995 (SD €7,526) peryear, with productivity loss (58%) and informal care (19%) accounting for the majority. Annual means of 189 and 41 working hours were lost due to absence from work and reduced productivity, respectively. Younger age and pemphigus vulgaris were associated with higher costs (p < 0.05). Expert opinion: This is the first cost-of-illness study applying the societal perspective in pemphigus. Our results indicate a substantial economic burden on society, mainly driven by productivity loss and informal care.

Subjective expectations regarding longevity and future health: a cross-sectional survey among patients with Crohn's disease.

AIM: The aim was to explore the subjective health expectations (sHE) of patients with Crohn's disease (CD) for both the near future and the elderly. METHOD: A cross-sectional survey was performed in four gastroenterology centres in Hungary. Consecutive outpatients with CD with age ≥ 18 were recruited. Socio-demographic and disease characteristics were recorded and the Crohn's Disease Activity Index (CDAI), Perianal Disease Activity Index, Patients' Global Assessment (PGA) and current pain visual analogue scale (VAS) were assessed. Subjective life expectancy (sLE) was explored and compared to statistical life expectancy. Current health and sHE for 1 year ahead and for ages 60/70/80/90 were assessed using the descriptive system of the EQ-5D-3L. RESULTS: In all, 206 patients (54.9% men) with a mean age of 34.7 (SD 10.5 years) and disease duration of 10.5 (SD 6.3) years were studied. The CDAI score was 110.5 (SD 77.0) and 66% were treated by biologic drugs. Mean current EQ-5D-3L score was 0.80 (SD 0.17) and patients expected a 0.05 (SD 0.15) improvement within a year (P < 0.05). For ages 60/70/80/90, a mean EQ-5D-3L score of 0.59, 0.38, 0.10 and -0.12 respectively was provisioned. Age, current health status, sLE, PGA and pain VAS showed significant correlation with both 1-year and older age sHE (P < 0.05). Long-term sHE and sLE were negatively affected by the presence of extraintestinal manifestations but not by previous CD-related surgery. CONCLUSION: Patients with CD expect severe deterioration in health in later life. Given that unrealistic sHE may affect patients' current quality of life and health behaviour, we encourage physicians to explore and consider CD patients' sHE in clinical care.

Validity of EQ-5D-5L, Skindex-16, DLQI and DLQI-R in patients with hidradenitis suppurativa.

BACKGROUND: Numerous generic, skin- and disease-specific health-related quality of life (HRQoL) measures are available for patients with hidradenitis suppurativa (HS). Yet, robust psychometric evidence is lacking in many aspects of these outcome measures. OBJECTIVES: We sought to determine convergent and known-groups validity of multiple generic and skin-specific HRQoL measures and to identify predictors of impaired HRQoL in patients with HS. METHODS: Between 2017 and 2019, a multicentre cross-sectional study was carried out involving 200 consecutive HS patients. HRQoL outcomes included the EQ-5D-5L, EQ visual analogue scale (EQ VAS), Skindex-16, Dermatology Life Quality Index (DLQI) and DLQI-Relevant (DLQI-R). Disease severity was graded by HS-Physician's Global Assessment (HS-PGA) scale and the Modified Sartorius scale (MSS). RESULTS: Overall, 77%, 56%, 51%, 46% and 28% reported problems in the pain/discomfort, usual activities, anxiety/depression, mobility and self-care dimensions of EQ-5D-5L. Mean ± SD EQ VAS, DLQI and DLQI-R scores were 64.29 ± 22.68, 11.75 ± 8.11 and 12.19 ± 8.33, respectively. Skindex-16 responses indicated that the emotional burden of HS (64.55 ± 29.28) far exceeded those of functioning (49.40 ± 34.70) and physical symptoms (46.74 ± 29.36). EQ-5D-5L, EQ VAS, DLQI, DLQI-R and Skindex-16 total scores had moderate or strong correlations with each other (range: |0.487| to |0.993|), weak or moderate correlations with HS-PGA (|0.350| to |0.433|) and weak correlations with MSS (|0.324| to |0.389|). DLQI-R slightly outperformed DLQI both in terms of convergent and known-groups validity. Being female, lower education level, more severe disease and genital involvement were associated with worse HRQoL (P < 0.05). CONCLUSION: This study provides high-quality evidence that among skin-specific outcomes, the DLQI, DLQI-R and Skindex-16, and among generic instruments, the EQ-5D-5L are suitable to be used in HS patients. In future research, we recommend the use of existing well-validated HRQoL tools instead of developing new measures for each study. The development of composite measures that combine physician- and patient-reported outcomes is not supported by evidence in HS. [Correction added on 25 July 2020, after first online publication: in the Abstract section, the ± signs were missing and have been added to this version.].

Managing COVID-19 within and across health systems: why we need performance intelligence to coordinate a global response.

BACKGROUND: The COVID-19 pandemic is a complex global public health crisis presenting clinical, organisational and system-wide challenges. Different research perspectives on health are needed in order to manage and monitor this crisis. Performance intelligence is an approach that emphasises the need for different research perspectives in supporting health systems' decision-makers to determine policies based on well-informed choices. In this paper, we present the viewpoint of the Innovative Training Network for Healthcare Performance Intelligence Professionals (HealthPros) on how performance intelligence can be used during and after the COVID-19 pandemic. DISCUSSION: A lack of standardised information, paired with limited discussion and alignment between countries contribute to uncertainty in decision-making in all countries. Consequently, a plethora of different non-data-driven and uncoordinated approaches to address the outbreak are noted worldwide. Comparative health system research is needed to help countries shape their response models in social care, public health, primary care, hospital care and long-term care through the different phases of the pandemic. There is a need in each phase to compare context-specific bundles of measures where the impact on health outcomes can be modelled using targeted data and advanced statistical methods. Performance intelligence can be pursued to compare data, construct indicators and identify optimal strategies. Embracing a system perspective will allow countries to take coordinated strategic decisions while mitigating the risk of system collapse.A framework for the development and implementation of performance intelligence has been outlined by the HealthPros Network and is of pertinence. Health systems need better and more timely data to govern through a pandemic-induced transition period where tensions between care needs, demand and capacity are exceptionally high worldwide. Health systems are challenged to ensure essential levels of healthcare towards all patients, including those who need routine assistance. CONCLUSION: Performance intelligence plays an essential role as part of a broader public health strategy in guiding the decisions of health system actors on the implementation of contextualised measures to tackle COVID-19 or any future epidemic as well as their effect on the health system at large. This should be based on commonly agreed-upon standardised data and fit-for-purpose indicators, making optimal use of existing health information infrastructures. The HealthPros Network can make a meaningful contribution.

DLQI-R scoring improves the discriminatory power of the Dermatology Life Quality Index in patients with psoriasis, pemphigus and morphea.

BACKGROUND: The Dermatology Life Quality Index (DLQI) rates 'not relevant' responses (NRRs) as the item on the questionnaire having no impact on the patients' lives at all. The DLQI-Relevant (DLQI-R) is a recently developed scoring that adjusts the total score of the questionnaire for the number of NRRs indicated by a patient. OBJECTIVES: To compare the discriminatory power of the original and DLQI-R scoring approaches in terms of absolute and relative informativity. METHODS: Cross-sectional data from 637 patients with morphea, pemphigus and psoriasis were used for the analyses. To assess absolute and relative informativity, Shannon's index and Shannon's evenness index were calculated for the 10 items on the questionnaire and for DLQI and DLQI-R total scores. RESULTS: Mean DLQI and DLQI-R scores of patients were 6·13 vs. 6·91. In the subset of patients with NRRs (n = 261, 41%), absolute informativity was higher with the DLQI-R scoring for all eight items with NRR options in all three conditions. The DLQI-R exhibited a better relative informativity in 8, 8 and 6 items in pemphigus, morphea and psoriasis, respectively. The DLQI-R led to an improvement in average item-level informativity in all DLQI score bands up to 20 points. Regarding total scores, the DLQI-R produced both a higher absolute and relative informativity in all three conditions. CONCLUSIONS: In patients with morphea, pemphigus and psoriasis, DLQI-R scoring improves the discriminatory power of the questionnaire by benefiting from the additional information in NRRs. DLQI-R scoring may be useful both in clinical practice and research. A scoring chart has been developed to aid physicians with scoring. What's already known about this topic? The original scoring of the Dermatology Life Quality Index (DLQI) rates 'not relevant' responses as the item of the questionnaire having no impact on the patients' lives at all. DLQI-Relevant (DLQI-R) is a new scoring developed in 2018 that adjusts the total score of the questionnaire for the number of 'not relevant' responses indicated by patients. The discriminatory power of the DLQI-R compared with the DLQI has not yet been investigated. What does this study add? In patients with psoriasis, pemphigus and morphea, DLQI-R scoring improves the discriminatory power of the questionnaire by benefiting from the additional information in 'not relevant' responses. What are the clinical implications of this work? DLQI-R scoring may help to more accurately quantify patients' health-related quality of life both in clinical practice and research. A scoring chart has been developed to aid physicians with scoring.

Patient-assigned health utility values for controlled and uncontrolled pemphigus vulgaris and foliaceus.

BACKGROUND: The assessment of health-related quality of life (HRQoL) in patients with pemphigus is now of increasing interest due to the availability of highly effective new therapies. Preference-based HRQoL values or health utilities required for medical and financial decision-making are not yet available directly from pemphigus patients. OBJECTIVE: To obtain health utility values for current health and hypothetical health states from the perspective of pemphigus patients. METHODS: A cross-sectional questionnaire survey was carried out with pemphigus patients. Disease severity was rated by Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Patients were asked to evaluate their current health as well as three common hypothetical pemphigus health states [uncontrolled pemphigus vulgaris (PV), uncontrolled pemphigus foliaceus (PF) and controlled PV/PF] by using composite time trade-off (cTTO). Multiple regression was applied to explore determinants of utility values. RESULTS: Responses of 108 patients (64.8% women, mean age 57.4 years) were analysed. Mean ABSIS score was 11.6. The mean utility values for the hypothetical uncontrolled PV, uncontrolled PF and controlled PV/PF health states were 0.41, 0.52 and 0.66 with cTTO. The mean cTTO scores for current health were higher compared with the hypothetical health states (0.76; P < 0.001). Patients with higher ABSIS, worse pain intensity scores and those having a caregiver reported lower utility values for current health (P < 0.05). CONCLUSIONS: In pemphigus, HRQoL impairment expressed in utility values seems to be considerable, especially in comparison with other chronic dermatological conditions (e.g. psoriasis, atopic eczema, chronic hand eczema). These health utilities inform physicians, policymakers and funders about the overall extent of health loss in pemphigus and provide evidence to guide medical decisions and cost-effectiveness analyses of treatment strategies. Future research is needed to evaluate the caregiver burden in pemphigus.

Validity of the EQ-5D in patients with pemphigus vulgaris and pemphigus foliaceus.

BACKGROUND: No studies to date have employed the EuroQoL EQ-5D questionnaire to assess health-related quality of life (HRQoL) in patients with pemphigus. OBJECTIVES: To evaluate the HRQoL of patients with pemphigus by the EQ-5D and to analyse the convergent and known-groups validity of the EQ-5D in this patient population. METHODS: Between 2014 and 2017, a multicentre cross-sectional study was carried out. Outcome measures included the five-level EQ-5D (EQ-5D-5L), Dermatology Life Quality Index (DLQI), Autoimmune Bullous Skin Disorder Intensity Score (ABSIS) and an average pain intensity visual analogue scale (VAS) for the past 3 months. RESULTS: In total, 109 consecutive patients with pemphigus participated in the study (mean age 57 years; 64% women). Among the EQ-5D dimensions, the most problems were reported regarding pain/discomfort (50%), mobility (43%) and anxiety/depression (43%). No significant difference was found in mean EQ-5D index scores between patients with pemphigus vulgaris and those with pemphigus foliaceus (0·81 vs. 0·86, P = 0·14). The mean EQ-5D index scores of patients with limited, moderate, significant and extreme pemphigus were 0·88, 0·82, 0·72 and 0·67, respectively (P = 0·001). The number of comorbidities was associated with greater impairment in EQ-5D index scores (P < 0·001). DLQI (rs = -0·62, P < 0·001) and the average pain intensity VAS (rs = -0·59, P < 0·001) more strongly correlated with the EQ-5D index scores than did ABSIS (rs = -0·40, P < 0·001). CONCLUSIONS: This is the first study employing the EQ-5D questionnaire in pemphigus. The EQ-5D is a valid measure of HRQoL in patients with pemphigus that can be useful both in clinical practice and in economic evaluations to assess the health gains associated with new effective treatments.

Proposal of a new scoring formula for the Dermatology Life Quality Index in psoriasis.

BACKGROUND: 'Not relevant' responses (NRRs) on the Dermatology Life Quality Index (DLQI) may occur in up to 40% of patients with psoriasis. As these responses are scored as the item of the questionnaire having no impact on the patients' lives at all, it is more difficult for these patients to fulfil the DLQI > 10 criterion required by clinical guidelines to become candidates for systemic treatment including biologics. OBJECTIVES: We propose a new scoring system for the DLQI that corrects for the bias in the NRR option and test its construct validity in a sample of patients with psoriasis. METHODS: Data from 242 patients (104 of whom marked at least one NRR) from two earlier cross-sectional surveys were reanalysed. For each patient, the DLQI score was calculated in two ways: (i) according to the original scoring and (ii) by applying a new scoring formula (DLQI-R) that adjusts the total score for the number of NRRs. The construct validity of the DLQI-R was tested against the Psoriasis Area and Severity Index (PASI) and EQ-5D-3L. RESULTS: The mean DLQI and DLQI-R scores were 9·99 ± 7·52 and 11·0 ± 8·02, respectively. The DLQI-R allowed eight more patients (3·3%) to achieve the 'PASI > 10 and DLQI > 10' threshold. The results were robust when limiting the maximum number of NRRs allowed to two or three. Compared with the DLQI, DLQI-R correlated slightly better with PASI (rs = 0·59 vs. 0·57) and EQ-5D-3L index scores (rs = -0·58 vs. -0·54). CONCLUSIONS: The DLQI-R seems to be a valid scoring system for avoiding the bias in the NRR option and can help to improve patients' access to biologics.

A detailed analysis of 'not relevant' responses on the DLQI in psoriasis: potential biases in treatment decisions.

BACKGROUND: Dermatology Life Quality Index (DLQI) is the most common health-related quality of life measure in dermatology that is widely used in treatment guidelines for psoriasis. Eight of the 10 questions of the DLQI offer a 'not relevant' response (NRR) option that is scored as the item had no impact on patients' life at all. OBJECTIVE: To explore the occurrence of NRRs on the DLQI in psoriasis patients and to examine the effect of several socio-demographic and clinical factors on giving NRRs. METHODS: Data were obtained from two cross-sectional surveys among psoriasis patients at two academic dermatology clinics in Hungary. Health-related quality of life was measured by employing DLQI and EQ-5D-3L, while disease severity was graded by Psoriasis Area and Severity Index (PASI). Multivariate logistic regression was applied to determine the predictors of providing NRRs. RESULTS: Mean age of the 428 patients was 49 years, and 65% were males. Mean PASI, DLQI and EQ-5D-3L index scores were 8.4 ± 9.5, 6.8 ± 7.4 and 0.74 ± 0.28, respectively. Overall, 38.8% of the patients had at least one NRR: 19.6% (one), 11.5% (two), 5.1% (three) and 2.6% (more than three). Most NRRs occurred in sport, sexual difficulties and working/studying items of the DLQI (28.4%, 16.4% and 14.0%, respectively). Female gender (OR 1.65; 95% CI 1.04-2.61), older age (OR 1.05; 95% CI 1.03-1.07) and higher PASI score (OR 1.03; 95% CI 1.01-1.06) were associated with providing more NRRs, whereas highly educated patients (OR 0.34; 95% CI 0.16-0.72) and those with a full-time job (OR 0.47; 95% CI 0.29-0.77) less frequently tended to tick NRRs. CONCLUSION: The high rate of psoriasis patients with NRRs, especially among women, less educated and elderly patients, indicates a content validity problem of the measure. A reconsideration of the use of the DLQI for medical and financial decision-making in psoriasis patients is suggested.

Valuation of pemphigus vulgaris and pemphigus foliaceus health states: a convenience sample experiment.

BACKGROUND: Health-related quality of life (HRQoL) in pemphigus has been widely investigated; nevertheless, utility values for economic evaluations are still lacking. OBJECTIVES: To estimate health utilities for hypothetical pemphigus vulgaris (PV) and pemphigus foliaceus (PF) health states in a general population sample. METHODS: Three health states (uncontrolled PV, uncontrolled PF and controlled pemphigus) were developed based on a systematic literature review of HRQoL studies in pemphigus. Utilities were obtained from a convenience sample of 108 adults using a visual analogue scale (VAS) and 10-year time trade-off (TTO). Lead-time TTO was applied for health states regarded as worse than dead with a lead time to disease time ratio of 1 : 1. RESULTS: The mean VAS utility scores for PV, PF and controlled pemphigus were 0·25 ± 0·15, 0·37 ± 0·17 and 0·63 ± 0·16, respectively. Corresponding TTO utilities were as follows: 0·34 ± 0·38, 0·51 ± 0·32 and 0·75 ± 0·31. Overall, 14% and 6% judged PV and PF as being worse than dead. For both VAS and TTO values, significant differences were observed between all health states (P < 0·001). VAS utilities were rated significantly lower compared with TTO in each health state (P < 0·001). CONCLUSIONS: This is the first study that reports health utility values for PV and PF. Successful treatment of pemphigus might result in significant utility gain (0·24-0·41). These empirical findings with respect to three health states in pemphigus may serve as anchor points for further utility studies and cost-effectiveness analyses.

Alopecia areata and health-related quality of life: a systematic review and meta-analysis.

BACKGROUND: No systematic review has yet evaluated the available evidence on health-related quality of life (HRQOL) in alopecia areata (AA). OBJECTIVES: To conduct a systematic review and meta-analysis of HRQOL studies among patients diagnosed with AA. METHODS: A systematic search was performed for papers published between 1946 and 15 December 2014 in Medline, Embase, Web of Science, CINAHL, PsycINFO and the Cochrane Library. Random-effects meta-analyses were conducted to pool data. RESULTS: Twenty-one studies were included, representing a total of 2530 adult patients with AA. Of the 14 different HRQOL measures used in the studies, Dermatology Life Quality Index (DLQI; n = 8) and SF-36 (n = 7) were the most common. Three AA-specific HRQOL instruments were identified: Alopecia Areata Quality of Life Index, Alopecia Areata Quality of Life and Alopecia Areata Symptom Impact Scale. The mean pooled DLQI score of patients with AA was 6·3 (95% confidence interval 5·6-7·1). Comparing age- and sex-matched controls, the meta-analysis of SF-36 studies revealed significantly reduced HRQOL across the role-emotional, mental health and vitality domains (P < 0·001). Wearing a wig had a positive impact, while scalp involvement, anxiety and depression had a negative impact on HRQOL. Conflicting results were found regarding the association between HRQOL and age, sex, marital status and disease duration. CONCLUSIONS: Patients with AA experience significant impairment in HRQOL, especially in the area of mental health. Several generic and dermatology-specific HRQOL instruments have been used, but no validation studies have confirmed their applicability in AA. The newly developed AA-specific measures seem very promising; however, a more extensive assessment of validity and reliability is needed.

Use of biologics for psoriasis in Central and Eastern European countries.

OBJECTIVES: To evaluate the use of biological agents for the treatment of psoriasis and to explore country-specific differences within six Central and Eastern European (CEE) countries, namely Bulgaria, Croatia, the Czech Republic, Hungary, Poland and Romania. METHODS: A literature overview on the epidemiology and disease burden of psoriasis in CEE was conducted. The number of patients treated with biologics was obtained from patient registries, ministries of health, national professional societies and health insurance funds. Biological treatment rates were estimated by two different methods: (i) as a proportion of all psoriasis patients of a country (assuming a common prevalence of psoriasis 2%) and (ii) per 100,000 population. Moreover, we provide a detailed comparison of drug coverage policies and guidelines regulating the treatment with biologics in psoriasis. RESULTS: On average 0.25% of all psoriasis patients, or five psoriasis patients out of 100,000 inhabitants are treated with biologics embedding a 14.6-fold difference between the six countries. Bulgaria, Croatia and Poland lag behind the other three countries in the use of biologics. The significant differences among CEE countries cannot be explained by variations in prices of biologics, cost-effectiveness or budget impact of biologics. It seems that the time since coverage decision, the fewer number of covered biologics, the more restrictive criteria to be eligible for covered treatment in terms of baseline Psoriasis Area and Severity Index and Dermatology Life Quality Index scores, and the maximum duration of treatment allowed are responsible for the majority of the differences. CONCLUSIONS: There exists a disconnect between the European psoriasis treatment guidelines and the various CEE country-specific biologic coverage eligibilities. The cost of biologic therapy for psoriasis is not solely and directly responsible for the different use rates amongst the CEE countries. Psoriasis may not be perceived by all payers as a serious disease that can be successfully treated in a cost-effective manner.

Moderate to severe psoriasis patients' subjective future expectations regarding health-related quality of life and longevity.

BACKGROUND: Unrealistic expectations regarding treatments and clinical outcomes may lead to disappointment about therapy and sub-optimal compliance; nonetheless, these expectations have not been studied in psoriasis patients yet. OBJECTIVE: To evaluate psoriasis patients' subjective future expectations regarding health-related quality of life (HRQOL) and life expectancy, and to explore clinical features associated with under- or overestimating behaviour. METHODS: A cross-sectional questionnaire survey of consecutive adult patients with moderate to severe psoriasis was conducted. HRQOL expectations were recorded by applying the EQ-5D descriptive system for 6 months ahead and for future ages of 60, 70, 80 and 90 respectively. RESULTS: In total, 167 patients (71% males) were included in the analysis with mean age of 50.4 ± 12.4 years and mean EQ-5D score of 0.71 ± 0.30. Overall 65% had chronic plaque psoriasis, 35% nail psoriasis, 35% scalp involvement, 29% psoriatic arthritis, 9% inverse psoriasis and 5% palmoplantar psoriasis respectively (combinations occurred). Participants expected 0.1 ± 0.23 mean improvement in EQ-5D within 6 months (P < 0.001) that achieves the minimum clinically important difference. Overall 37% expected improvement and 13% decline; however, 49% expected no changes in any of the five dimensions of EQ-5D within 6 months. Female gender, inverse or palmoplantar involvement and more severe psoriasis were likely associated with higher expectations. Patients at the initiation of their first biological at the time of the survey expected 0.18 ± 0.24 increase that seems to be realistic compared to the EQ-5D utility gain achieved in randomized controlled trials. Males expected by 2.7 ± 11.1 more, while females expected by 5.2 ± 9.3 less life years compared to the average statistical gender- and age-matched life expectancy (P < 0.05). Patients who expected to be alive at ages of 60, 70, 80 and 90 scored their future EQ-5D at ages of 60 to 90: 0.59 ± 0.46, 0.48 ± 0.41, 0.42 ± 0.41 and 0.22 ± 0.47 respectively. CONCLUSION: Our findings highlight the importance of exploring expectations that might help to increase patients' compliance.

The state of the art in European research on reducing social exclusion and stigma related to mental health: a systematic mapping of the literature.

Stigma and social exclusion related to mental health are of substantial public health importance for Europe. As part of ROAMER (ROAdmap for MEntal health Research in Europe), we used systematic mapping techniques to describe the current state of research on stigma and social exclusion across Europe. Findings demonstrate growing interest in this field between 2007 and 2012. Most studies were descriptive (60%), focused on adults of working age (60%) and were performed in Northwest Europe-primarily in the UK (32%), Finland (8%), Sweden (8%) and Germany (7%). In terms of mental health characteristics, the largest proportion of studies investigated general mental health (20%), common mental disorders (16%), schizophrenia (16%) or depression (14%). There is a paucity of research looking at mechanisms to reduce stigma and promote social inclusion, or at factors that might promote resilience or protect against stigma/social exclusion across the life course. Evidence is also limited in relation to evaluations of interventions. Increasing incentives for cross-country research collaborations, especially with new EU Member States and collaboration across European professional organizations and disciplines, could improve understanding of the range of underpinning social and cultural factors which promote inclusion or contribute toward lower levels of stigma, especially during times of hardship.