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There is growing concern that Coronavirus Disease 2019 (COVID-19) vaccine fatigue will be a major obstacle in maintaining immunity in the general population. In this study, we assessed vaccine acceptance in future scenarios in two conjoint experiments, investigating determinants such as new vaccines, communication, costs/incentives and legal rules. The experiments were embedded in an online survey (n = 6,357 participants) conducted in two European countries (Austria and Italy). Our results suggest that vaccination campaigns should be tailored to subgroups based on their vaccination status. Among the unvaccinated, campaign messages conveying community spirit had a positive effect (0.343, confidence interval (CI) 0.019–0.666), whereas offering positive incentives, such as a cash reward (0.722, CI 0.429–1.014) or voucher (0.670, CI 0.373–0.967), was pivotal to the decision-making of those vaccinated once or twice. Among the triple vaccinated, vaccination readiness increased when adapted vaccines were offered (0.279, CI 0.182–0.377), but costs (−0.795, CI −0.935 to −0.654) and medical dissensus (−0.161, CI −0.293 to −0.030) reduced their likelihood to get vaccinated. We conclude that failing to mobilize the triple vaccinated is likely to result in booster vaccination rates falling short of expectations. For long-term success, measures fostering institutional trust should be considered. These results provide guidance to those responsible for future COVID-19 vaccination campaigns.

Summary Background There is a lack of knowledge on how people at increased risk of severe illness from Coronavirus disease 2019 (COVID-19) experienced the infection control measures. This study aimed to explore their perspectives and needs during the coronavirus outbreak. Methods A qualitative longitudinal interview study was conducted in Austria during lockdown due to COVID-19 containment and afterwards. People older than 65 years of age and/or affected by a chronic medical condition participated in individual telephone interviews at two time points. Thematic analysis was used to analyze the data and saturation was defined as no new emerging concepts in at least 10 subsequent interviews. Results Thematic saturation was reached when 33 individuals (75.8% female, mean age ± standard deviation [SD] 73.7±10.9 years) were included. A total of 44 lower level concepts were extracted and summarized into 6 higher level concepts. They included (i) a general positive attitude toward COVID-19 measures, (ii) challenges of being isolated from the community, (iii) deterioration of health status, (iv) difficulties with measures due to their health condition, (v) lack of physical contact and (vi) lack of information versus overload. Participants suggested environmental adaptations for strengthening resilience in people at increased risk of severe illness from COVID-19. Conclusion Strategies and interventions are needed to support people at risk under pandemic conditions. Their perceptions and needs should be addressed to reduce the potential deterioration of health conditions and ensure well-being even during prolonged periods of crisis.

Objectives The number of published clinical practice guidelines related to COVID-19 has rapidly increased. This study explored if basic methodological standards of guideline development have been met in the published clinical practice guidelines related to COVID-19. Study Design and Setting Rapid systematic review from February 1 until April 27, 2020 using MEDLINE [PubMed], CINAHL [Ebsco], Trip and manual search, including all types of healthcare workers providing any kind of healthcare to any patient population in any setting. Results There were 1342 titles screened and 188 guidelines included. The highest average AGREE II domain score was 89% for scope and purpose, the lowest for rigor of development (25%). Only eight guidelines (4%) were based on a systematic literature search and a structured consensus process by representative experts (classified as the highest methodological quality). The majority (156; 83%) was solely built on an informal expert consensus. A process for regular updates was described in 27 guidelines (14%). Patients were included in the development of only one guideline. Conclusion Despite clear scope, most publications fell short of basic methodological standards of guideline development. Clinicians should use guidelines that include up-to-date information, were informed by stakeholder involvement, and employed rigorous methodologies., Graphical Abstract Image, graphical abstract

COVID-19 vaccine fatigue is a major challenge in keeping the immunity in the general population up to date. Yet, not enough is known about how this problem can be overcome. We assessed vaccine acceptance in future scenarios in two conjoint experiments, manipulating factors such as new vaccines, communication, costs/incentives, and legal rules. The experiments were embedded in an online survey (N= 6,357 participants) conducted simultaneously in two European countries (Austria and Italy). The results show that adapted vaccines, their cost-free provision and expert consensus could help to counteract vaccine fatigue. To some extent, also positive incentives, celebrity endorsements, and knowledge about Long COVID may motivate citizens to get the vaccination. Motivational appeals mainly affected secondary outcomes such as the evaluation of vaccination campaigns. As the effect sizes of treatments were modest overall, vaccination campaigns should focus on mobilizing those with a general willingness to get vaccinated.

BackgroundOngoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings.Methods and participantsWe developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed theChecklist for Reporting Results of Internet E-Surveysguideline.ResultsThe questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were ‘professional development’, ‘prevention and lifestyle intervention’. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers.ConclusionsTo promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.

BACKGROUND On January 30, 2020, the World Health Organization Emergency Committee declared the rapid worldwide spread of COVID-19 a global health emergency. By December 2020, the safety and efficacy of the first COVID-19 vaccines had been demonstrated. However, international vaccination coverage rates have remained below expectations (in Europe at the time of manuscript submission). Controversial mandatory vaccination is currently being discussed and has already been introduced in some countries (Austria, Greece, and Italy). We used the Twitter survey system as a viable method to quickly and comprehensively gather international public health insights on mandatory vaccination against COVID-19. OBJECTIVE The purpose of this study was to better understand the public’s perception of mandatory COVID-19 vaccination in real time using Twitter polls. METHODS Two Twitter polls were developed (in the English language) to seek the public’s opinion on the possibility of mandatory vaccination. The polls were pinned to the Digital Health and Patient Safety Platform’s (based in Vienna, Austria) Twitter timeline for 1 week in mid-November 2021, 3 days after the official public announcement of mandatory COVID-19 vaccination in Austria. Twitter users were asked to participate and retweet the polls to reach the largest possible audience. RESULTS Our Twitter polls revealed two extremes on the topic of mandatory vaccination against COVID-19. Almost half of the 2545 respondents (n=1246, 49%) favor mandatory vaccination, at least in certain areas. This attitude contrasts with the 45.7% (n=1162) who categorically reject mandatory vaccination. Over one-quarter (n=621, 26.3%) of participating Twitter users said they would never get vaccinated, as reflected by the current Western European and North American vaccination coverage rate. Concatenating interpretation of these two polls should be done cautiously as participating populations might substantially differ. CONCLUSIONS Mandatory vaccination against COVID-19 (in at least certain areas) is favored by less than 50%, whereas it is opposed by almost half of the surveyed Twitter users. Since (social) media strongly influences public perceptions and views, and social media discussions and surveys are specifically susceptible to the “echo chamber effect,” the results should be interpreted as a momentary snapshot. Therefore, the results of this study need to be complemented by long-term surveys to maintain their validity.

Objectives The 14-item Oral Health Impact Profile (OHIP-14) is the most frequently used instrument to measure oral health-related quality-of-life (OHRQoL) in adults. Despite its popularity, its psychometric properties have been predominantly investigated based on the classical test theory while the fundamental principles of measurement have not been fully assessed. Therefore, our aim was to investigate to what extent the OHIP-14 meets the fundamental requirments of measurements. Methods We used the Rasch model to explore person-item-targeting, unidimensionality, local independence of items, invariance (differential-item-functioning, DIF), and the order of thresholds between response-options in the German version OHIP-14. We used data from osteoarthritis patients because hand disabilities and joint pain might influence oral hygiene. Furthermore, osteoarthritis in the temporomandibular-joint directly affects oral functioning. Results Five-hundred sixteen patients were included (mean age 66.5 years [±10.2; ranging from 34 to 89]; 71.3% [368] females). The OHIP-14 median total score was 0 (interquartile-range from 0 to 4), indicating a right-skewed distribution because many patients reported good OHRQoL. The instrument was found unidimensional. However, there was strong evidence of local dependency, disordered thresholds between response-options, and age-related DIF for item 5. A revised scoring scheme with three instead of five answer-options in all items and eliminating two items resolving local dependency, the newly adapted OHIP-12, showed better reliability and item-fit to the Rasch model than the original OHIP-14. Conclusions This study assesses, for the first time, the OHIP-14 in terms of fundamental principles of measurement and proposes an item-reduced OHIP-12 as a psychometrically more accurate version of the instrument. Clinical significance The Rasch model is essential to ensure instruments' precision and clinical meaningfulness when measuring OHRQoL in clinical practice and research. The OHIP-12, derived from the OHIP-14 by deleting two items due to local dependency, with a revised scoring scheme for all items distinguishing three answer-options instead of five, represents a psychometrically improved version of the instrument.

Tanja A Stamm,1,2 Yuki Seidler,1 Margaret R Andrews,1 Mohammad Eghbali,3 Juliet Kiguli,4 Valentin Ritschl,1 Maisa Omara,1,2 Gertraud Schaffer,5 Erika Mosor1 1Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria; 2Ludwig Boltzmann Institute for Arthritis and Rehabilitation, Vienna, Austria; 3School of Nursing and Midwifery, Torbat Heydariyeh University of Medical Sciences, Torbat Heydariyeh, Iran; 4Department Community Health & Behavioural Sciences, Makerere University School of Public Health, College of Health Sciences, New Mulago Hospital Complex, Kampala, Uganda; 5Österreichische Rheumaliga (ÖRL), Maria Alm, AustriaCorrespondence: Tanja A Stamm, Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Spitalgasse 23, Vienna, 1090, Austria, Email tanja.stamm@meduniwien.ac.atObjective: Several comments and recommendations called to embed better the patients’ and public voice in healthcare policymaking. Still, no studies captured patients’ bottom-up perspectives regarding healthcare at the time of COVID-19 at a micro-level in a range of different countries. We, therefore, explored the perspectives of patient representatives in all six World Health Organisation (WHO) regions and extracted suggestions for care redesign after the pandemic.Methods: We conducted semi-structured interviews with patient representatives until saturation. Thematic analysis followed a modified form of meaning condensation. We established rigour by transcript checking, inter-coder agreement, quote variation and standardised reporting.Results: Disadvantaged people experienced an unprecedented inequity in healthcare from limited access to physical violence. The narratives revealed the extent of this inequity, but also opportunities for health workers to act and improve. Stigmatisation from COVID-19 differed between cultures and countries and ranged from none to feeling “ashamed” and “totally bashed”. While experienced as indispensable in the future, patients refused telehealth when they were given “bad news”, such as having an eye removed because of melanoma, and in end-of-life care. Patient representatives redefined their role and became indispensable influencers throughout the pandemic and beyond.Conclusion: We reached out to patient representatives with diverse perspectives, including those who represent minorities and marginalised patient populations. Since preferences and personal meanings drive behaviour and could be foundations for targeted interventions, they must be considered in all groups of people to increase society’s resilience as a whole. Future healthcare should tackle inequity, address stigmatisation and consider patients’ narratives to optimize telemedicine.Keywords: coronavirus, COVID-19, SARS CoV-2, patient perspectives, equity, co-creation

Relatively few studies have identified the means to improve the quality of sex education in schools. This study aimed to qualitatively investigate whether sex education in Austria facilitates the d...

BackgroundPatient-reported outcomes (PROs) are an essential part of health outcome measurement and vital to patient-centricity and valued-based care. Several international consortia have developed core outcome sets and many of them include PROs. PROs are measured by patient-reported outcome measures (PROMs). PROs and PROMs can be generic or specific to certain diseases or conditions. While the characteristics of generic PROs and PROMs are well recognised as widely relevant and applicable across different domains, diseases and conditions, there is a lack of knowledge on the types of PROs measured by generic PROMs. We also do not know in which disease areas generic PROs and PROMs are commonly used. To date, there has been no systematic review solely focusing on generic PROMs, what they measure and their areas of application.ObjectivesThis systematic review will identify core PROs measured by generic PROMs used in adult populations and the areas in which they are applied.MethodsWe will conduct a systematic review of reviews. The screening process and the reporting will comply with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) 2020 Statement. We will use four databases, Medline [PubMed], CINHAL [Ebsco], Cochrane [Cochrane Library], and PsycINFO [Ovid], and reports from international consortia. Inclusion criteria are systematic reviews, meta-analysis or patient-reported outcome sets developed by international consortia reporting on generic PROMs in adult populations. Articles primarily focusing on patient-reported experience measures (PREMs), children or adolescents, or those not written in English will be excluded. Risk of bias will be assessed by checking if the included articles comply with established guidelines for systematic reviews such as the PRISMA statement. We will extract generic PROMs and PROs measured by these PROMs, and the areas applied from the selected articles and reports. Extracted data and information will be quantitatively and qualitatively synthesised without statistical interference. The quality of the synthesised evidences will be assessed by clarifying the strengths, limitations and possible biases in our review.

Older age is a substantial risk factor for serious illness from COVID-19. Moreover, isolation and quarantine are more likely to cause physical, mental and social deprivation in older age. Information and Communication Tools are means to prevent such consequences.This study aimed therefore to investigate the impact of the COVID-19 lockdown measures on the usage of an innovative technical support system deployed in Austria (AT) and Luxembourg (LU) consisting of several tools that allow independent living in older age.Thirty-nine older adults (11 male; 28 female) with a mean age of 74.3 (SD 7.3) years were included in the study. In total, 18 older people were recruited in AT and 21 in LU. Descriptive statistics were computed, and longitudinal models were fitted for technology use and self-reported mood.The number of older adults using the system significantly decreased from the time before lockdown (39 [100%]) to during lockdown (26 [67%]) and thereafter (23 [59%]; p 0.001). Multiple comparisons revealed a significant reduction in the average number of events for calendar and medication tools, but a substantial increase in communication and messaging events. Self-reported well-being declined during the lockdown and increased afterwards back to baseline levels.Communication was the main reason for using the support system. In addition, strategies and interventions are essential to support older adults when using information technology in the prolonged phases of the pandemic to sustain independent living.The DAPAS protocol was published at www.researchgate.net. DOI: 10.13140/RG.2.2.24233.34401.

Background: Inaccurate measurement of self-reported instruments including questionnaires and symptom checklists jeopardizes the comparability of the results. We therefore used advanced psychometric modelling to determine if the fundamental principles of measurement of an online self-reported COVID-19 symptom checklist were met or whether adaptations were necessary to increase measurement precision.Methods: Fit to the Rasch model was examined in a sample of 1638 Austrian citizens who completed an online COVID-19 symptom checklist on up to 20 days during a period of restrictive country-wide COVID-19 measures.Results: The longitudinal application of the self-reported COVID-19 symptom checklist increased the fit to the Rasch model. The items ‘fatigue’, ‘headache’ and ‘sneezing’ had the highest likelihood to be affirmed. The item ‘cough’ showed a significant misfit to the fundamental measurement model and an additional dependency to ’dry cough/no sputum production’. Several personal factors, such as gender, age group, educational status, COVID-19 test status, comorbidities, immunosuppressive medication, pregnancy and pollen allergy led to systematic differences in the patterns of how symptoms were affirmed. Adjustments ranged from ±0.25 to ±0.01 on the metric scales (0 to 10) to which the raw scores were transformed.Conclusion: Except for some basic adaptations, the present analysis supports the combination of items. More accurate item wordings co-created with lay persons and adjustments for personal factors would increase measurement precision of the self-reported COVID-19 symptom checklist.

ObjectiveTo establish European League Against Rheumatism (EULAR) points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older.MethodsPoints to consider were developed in accordance with EULAR standard operating procedures for EULAR-endorsed recommendations, led by an international multidisciplinary task force, including patient research partners and different health professionals from 10 European countries. Level of evidence and strength of recommendation were determined for each point to consider, and the mean level of agreement among the task force members was calculated.ResultsTwo overarching principles and seven points to consider were formulated based on scientific evidence and the expert opinion of the task force. The two overarching principles focus on shared decisions between patients and non-physician health professionals and involvement of different non-physician health professionals in prevention and management of fragility fractures. Four points to consider relate to prevention: identification of patients at risk of fracture, fall risk evaluation, multicomponent interventions to prevent primary fracture and discouragement of smoking and overuse of alcohol. The remaining three focus on management of fragility fractures: exercise and nutritional interventions, the organisation and coordination of multidisciplinary services for post-fracture models of care and adherence to anti-osteoporosis medicines. The mean level of agreement among the task force for the overarching principles and the points to consider ranged between 8.4 and 9.6.ConclusionThese first EULAR points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older serve to guide healthcare practice and education.

To date, Austria is among the countries with the lowest coronavirus vaccination rates in Western Europe. It has announced the introduction of a general vaccine mandate but is experiencing an increasing societal polarization over this issue. We, therefore, aimed to provide evidence on the underlying motivations of vaccine hesitancy and evaluate what kinds of interventions - information, incentives, and rules - might increase vaccination readiness.We conducted a cross-sectional survey with a sample of 1,543 unvaccinated Austrian residents in October 2021, including two embedded conjoint experiments.We screened 8,190 individuals to recruit the sample matching the Austrian micro-census. In experiment 1, easing rather than tightening of societal restrictions, a fixed monetary reward compared to a lottery and physicians' recommendations were associated with significantly higher intentions to get vaccinated. In experiment 2, standard approval by European or national authorities and simple information had a significant positive effect on vaccination propensity. Among the unvaccinated, fear of side effects, beliefs that comorbidities or the desire to have children would not allow vaccination, the assumption that the own immune system would provide sufficient protection, conspirational thinking (e.g., the refusal to participate in a 'large genetic experiment'), low trust in societal institutions, and spiritual beliefs were very common.While many unvaccinated showed a low propensity to become vaccinated, we identified a cluster of 195 (23% of the participants without missing values) that could potentially be reached by information and incentives, including people with heightened comorbidity rates or a desire for children.Vienna Science and Technology Fund.

IntroductionAlthough patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.MethodsA multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.ResultsFifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.ConclusionsDespite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.

OBJECTIVE: In western countries, the number of people who have dementia rises continuously. Approximately 80% live at home, supported by their relatives, but the burden of these informal caregivers is high. We developed the Android application DEA to support them. METHODOLOGY: Fifteen relatives (n=15) participated in a mixed-methods study to evaluate the personal satisfaction, technical performance, and usability of the app. Individual and focus group interviews are analysed qualitatively, and every participant completed the System Usability Scale Questionnaire and an additional custom-made questionnaire. RESULTS: The app was assessed with high stability and usability. The majority of the participants felt motivated by the app to try out new activities in their daily life. Those people, who have been very active in their everyday life before, perceived the app as confirmation of what they had been doing so far. The participants describe the app's information module as security backup in case they ever need something. The communication module has not been used. CONCLUSION: The results show that an app to support informal caregivers for people with dementia was perceived as valuable by our test-group. A "one-for-all" solution for this target group is complicated because of different background knowledge of caregivers, which means that everyone needs a different level of information and support.

BackgroundThe number of published clinical practice guidelines and recommendations related to SARS-CoV-2 infections causing COVID-19 has rapidly increased. However, insufficient consideration of appropriate methodologies in the guideline development could lead to misleading information, uncertainty among professionals, and potentially harmful actions for patients.PurposeRapid systematic review of clinical practice guidelines and recommendations in the context of COVID-19 to explore if basic methodological standards of guideline development have been met.Data sourcesMEDLINE [PubMed], CINAHL [Ebsco], Trip and manual search; from Feb 1st 2020 until April 27th 2020.Study selectionAll types of healthcare workers providing any kind of healthcare to any patient population in any setting.Data extractionAt least two reviewers independently extracted guideline characteristics, conducted critical appraisal according to The Appraisal of Guidelines for Research and Evaluation Instrument (AGREE II) and classified the guidelines using the Association of the Scientific Medical Societies (AWMF) Guidance Manual and Rules for Guideline Development. We plan six-month updates (living review).Data synthesisThere were 1342 titles screened and 188 guidelines included. The highest average AGREE II domain score was 89% for scope and purpose, the lowest for rigor of development (25%). Only eight guidelines (4%) were based on a systematic literature search and a structured consensus process by representative experts (classified as the highest methodological quality, S3 according to AWMF). Patients were only included in the development of one guideline. A process for regular updates was described in 27 guidelines (14%).LimitationsMethodological focus only.ConclusionsDespite clear scope, most publications fell short of basic methodological standards of guideline development. Future research should monitor the evolving methodological quality of the guidelines and their updates over time.Registration/PublicationThe protocol was published at www.researchgate.net, DOI: 10.13140/RG.2.2.21293.51689. Preliminary results are publicly available on medRxiv.

ObjectiveTo perform a systematic literature review (SLR) about the effect of non-pharmacological interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures.MethodsEight clinical questions based on two criteria guided the SLR: (1) adults≥50 years at high risk of osteoporotic fracture and (2) interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures. Interventions focused on diagnostic procedures to identify risk of falling, therapeutic approaches and implementation strategies. Outcomes included fractures, falls, risk of falling and change in bone mineral density. Systematic reviews and randomised controlled trials were preferentially selected. Data were synthesised using a qualitative descriptive approach.ResultsOf 15 917 records, 43 articles were included. Studies were clinically and methodologically diverse. We identified sufficient evidence that structured exercise, incorporating progressive resistance training delivered to people who had undergone hip fracture surgery, and multicomponent exercise, delivered to people at risk of primary fracture, reduced risk of falling. The effectiveness of multidisciplinary fracture liaison services in reducing refracture rate was confirmed. There was insufficient evidence found to support the effectiveness of nutrients and falls prevention programmes in this patient population.ConclusionDespite study heterogeneity, our SLR showed beneficial effects of some interventions delivered by non-physician health professionals and the positive impact of multidisciplinary team working and patient educational approaches to prevent and manage osteoporotic fractures. These results informed a EULAR taskforce that developed points to consider for non-physician health professionals to prevent and manage osteoporotic fractures.

Objectives The most important dental patient-reported outcome (dPRO) is oral health-related quality of life (OHRQoL) which was commonly based on the following four dimensions: Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact. However, until now, analyses linking dPROSs to the four dimensions have only been done in adults. We therefore examined if the existing dental patient-reported outcome measures (dPROMS) for pediatric patients could also be mapped to these four domains. Methods We performed a literature search to identify generic dPROMs administered in children and adolescents. Two researchers independently assessed titles, abstracts and full texts and extracted pediatric dPROMs and items. dPROM items were then mapped to the four OHRQoL dimensions. Results We identified 701 articles. After abstract screening, 118 articles were reviewed in full text. Fifteen articles met the inclusion criteria. Twelve instruments were identified, including six modified versions of the questionnaires. All questionnaires and their included items could be mapped to the four dimensions. In some cases, items were linked to two dimensions. Conclusions The four OHRQoL dimensions (Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact) are also applicable for existing dPROMs in pediatric dental patients. These dimensions should therefore be considered when measuring OHRQoL in children and adolescents in future studies.

Background:COVID-19 has changed daily practice in medicine and affected teaching as well as research activities of medical personnel. Meanwhile, the pandemic´s impact on private life and responsibilities for dependents also affected health care workers in rheumatology.Objectives:To examine the adaptability of clinician-researchers in rheumatology in a time of crisis focusing on academic output in the first six months of the COVID-19 pandemic and to investigate the professional and private burden experienced by health care workers in rheumatology.Methods:A systematic search in PubMed, medRxiv and bioRxiv for reports of rheumatic diseases and COVID-19/SARS-CoV-2 submitted (or published) from January 1 to June 30 2020 was carried out. As comparison, publications from April 6 to 13 2019 of the same rheumatic diseases without COVID-19 were analysed in terms of author characteristics and journal metrics. Additionally, a questionnaire was circulated via EULAR countries rheumatology societies and individual working group members. The participants were asked to answer 43 questions regarding their family situation, professional background, research output, changes in work and private responsibilities during the pandemic as well as the burden experienced. Responses were collected using an online survey tool and data analyses performed with SPSS Statistics 25; missing variable analysis was performed, excluding records with >15% missing responses. Descriptive and summary statistics were calculated for the entire dataset and split by gender.Results:Whereas the overall number of publications and authors was equal between 2020 and 2019, the portion of female first authors of review articles and original studies decreased substantially in the first phase of the pandemic (Table 1). The numerical contribution of female authors in highly ranked journals (impact factor>6) was comparable in 2019 and 2020, however, the percentage of female first authors dropped from 50% to 32% (P=0.07).Table 1.Author and journal metrics of publicationsAuthorsProportion female2019 (%)N=13862020 (%)N=1361P-valueoverall46,841.1n.s.first authorshipsall publications46,835,30.021reviews56,730n.s.original studies46,218,20.004other reports*42,639,9n.s.last authorshipsall publications34,727,9n.s.reviews33,315n.s.original studies32,130,3n.s.other reports*40,729,1n.s.*other reports: letters/editorials/case reportsIn the survey, a total dataset was available for N=180 responders. On average, female respondents (52.5%) were younger, more likely to live alone (19,1% vs 10,5%) and have no caring responsibilities (51.1% vs. 36.3%) than male respondents.Male doctors were more often tenure-track/tenured or chairmen (31.4% vs 12.8% female) and worked less often part-time (9,3% vs. 19.1%). Unpaid overtime hours of all participants were striking with 46.3/44,2% (female/male) reporting to accumulate >10 hours/ week.Regarding gender differences in scientific output, male respondents more frequently revealed >20 publications as first (57,6% vs. 26,9%) or last authors (34.1% vs. 10,1%). Similarly, 44,7% of male respondents reported a last author publication during COVID-19 vs. 26,4% of female respondents.While female and male respondents reported similar experience of burden during the pandemic, more female respondents reported increased family care as a major source of this (38,2% vs. 22,2%). Both genders would like to see increased support from superiors and official institutions.Conclusion:In a time of acute crisis, the adaptability of scientifically active female health care workers in rheumatology is lower than that of their male counterparts. This is reflected in a lower scientific output, especially as first or last authors. However, the burden experienced in the current pandemic is similar between the genders.Disclosure of Interests:None declared

ObjectiveNon-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding content, feasibility and potential suitability in an e-health setting.MethodsA literature search was performed in eight different databases in July 2020. The intervention’s content was extracted using the ‘Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide’. A Sankey diagram and descriptive statistics were used to analyse the data and illustrate the relationships between the interventions.ResultsOf 8198 identified records, 119 papers were eligible. One hundred and four of them (87.4%) were conducted between 2000 and 2020, mainly in the USA (SLE n=24 (21.2%), SSc n=16 (14.2%)), Brazil (SLE n=8 (7.1%), SSc n=5 (4.4%)) and Italy (SLE n=0 (0%), SSc n=12 (10.6%)). Fifty-two studies (SLE n=24 (21.2%), SSc n=28 (24.8%)) used multicomponent interventions. The single interventions were physical exercises (SLE n=16 (14.2%), SSc n=17 (15.0%)), coaching/counselling (SLE n=11 (18.0%), SSc n=0 (0%)) and education (SLE n=2 (1.8%), SSc n=3 (2.7%)). Primary outcomes focused on physical function (SLE n=1 (0.9%), SSc n=15 (13.3%)), mouth opening in SSc (n=4 (5.9%)) and physical capacity (SLE n=2 (1.8%), SSc n=1 (0.9%)). No interventions for mixed connective tissue disease were found.ConclusionThere was a great variety in the intervention’s content due to differences in body structure, activity limitations and participation restrictions in SLE and SSc. These results highlight the need for personalised, multicomponent, non-pharmacological interventions, which could be delivered as e-health interventions.

Rehabilitationsmasnahmen bei PatientInnen sollten in allen Phasen der Erkrankung, auch im fortgeschrittenen Stadium, zur Anwendung kommen, um die Lebensqualitat und die Funktionsfahigkeit betroffener Menschen bestmoglich zu erhalten und zu verbessern. Personalisierte und individuelle Assessments und Therapiemittel sind in der Onkologischen Rehabilitation im Bereich von Teilhabe und Arbeitsfahigkeit essenziell. Multiprofessionelle bzw. interdisziplinare Zusammenarbeit ist erforderlich, um gemeinsam die Ziele im Rahmen einer Rehabilitation erreichen zu konnen. Die ICF der Weltgesundheitsorganisation eignet sich zur umfassenden Beschreibung von Teilhabe und Arbeitsfahigkeit sowie als gemeinsame Sprache eines multiprofessionellen bzw. interdisziplinaren Teams.

Background Although patient-reported outcome measures (PROMs) are extensively used in clinical practice and research, it is unclear whether the most commonly used instruments adequately cover the perspective of young people with chronic inflammatory arthritis. Objectives To investigate whether the aspects important to young people with inflammatory arthritis are sufficiently covered by the PROMs that are widely used in clinical practice and research. Methods A qualitative, multicentre focus group interview study was conducted in Austria, Croatia, Italy and the Netherlands in order to inform a EULAR-funded taskforce. Three groups of young people (aged 18-35 years) with either (1) rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and Still’s disease, (2) psoriatic arthritis (PsA), or (3) axial spondyloarthritis (SpA) were interviewed at each centre. The interview guide was based on the WHO International Classification of Functioning, Disability and Health (ICF) to comprehensively cover all aspects of functioning in daily life. It also included questions on the perspectives and views of the participants on selected PROMs (Pain scales, Patient Global Assessment [PGA], FACIT Fatigue Scale, The Health Assessment Questionnaire [HAQ]/Bath Ankylosing Spondylitis Functional Index [BASFI], and The 36-Item Short Form Health Survey [SF-36]). All interviews were conducted by trained local investigators, audio-recorded, transcribed verbatim, and analysed using a modified form of ‘meaning condensation’. During a face-to-face meeting of the task-force members, the concepts were reformulated and organized into a scheme of higher and lower-level concepts. Results Thematic saturation was reached after 12 focus groups with 53 participants (21 with RA/JIA/Still’s, 15 with SpA, 17 with PsA; 72% female, mean age 28, SD±5), resulting in 18 hours and 22 minutes of recorded time and 269 pages of transcript. The analysis revealed aspects of functioning in daily life important to young people with inflammatory arthritis which were mentioned in all countries. Furthermore, 55 concepts emerged with regard to PROMs and were summarized into seven higher-level concepts. The table depicts these higher-level concepts including quotes from the interviews. Conclusion The evaluation of young patients’ perspectives should probably reach beyond the topics/aspects covered in the most commonly used PROMs. Accordingly, tailoring the assessments to specific needs of young people should be considered. Acknowledgement We would like to thank the participants for taking part in the study and for sharing their valuable perspectives. Disclosure of Interests Erika Mosor: None declared, Paul Studenic: None declared, Alessia Alunno: None declared, Ivan Padjen: None declared, Wendy Olsder: None declared, Sofia Ramiro Grant/research support from: MSD, Consultant for: AbbVie, Lilly, MSD, Novartis, Pfizer, Sanofi, Speakers bureau: AbbVie, Lilly, MSD, Novartis, Pfizer, Sanofi, Ilaria Bini: None declared, Nele Caeyers: None declared, Laure Gossec Grant/research support from: AbbVie, BMS, Celgene, Janssen, Lilly, MSD, Novartis-Sandoz, Pfizer, Sanofi, and UCB, Consultant for: AbbVie, Biogen, BMS, Celgene, Janssen, Lilly, MSD, Nordic Pharma, Novartis-Sandoz, Pfizer, Roche, Sanofi, and UCB, Consultant for: L Gossec has received honoraria from Celgene as investigator for this study, Marios Kouloumas: None declared, Elena Nikiphorou: None declared, Simon Stones Consultant for: SS has provided consultancy services to Envision Pharma Group, though this is not related to the contents of this abstract., Speakers bureau: SS has undertaken speaking engagements for Actelion, eyeforpharma, Four Health, Janssen and Roche, though these are not related to the contents of this abstract., Tanita-Christina Wilhelmer: None declared, Tanja Stamm Grant/research support from: TS has received grant support from AbbVie., Paid instructor for: TS has received speaker fees from AbbVie, Janssen, MSD, Novartis, and Roche.

Objective Early dental monitoring contributes substantially to good oral health in children. However, little is known on whether children from different geographical regions and gender are equally reached with current preventive and curative oral health strategies. The aim of our study therefore was to explore regional and gender differences in a population-based oral health dataset of Austrian children up to the age of 14. Materials and methods We extracted the first electronically available health insurance data of children aged up to 14 years on dental services within a 4-year observation period in Austria and performed a separate analysis in up to 6-year-old children. In addition, we used a smaller randomly selected sample dataset of 3000 children as the large numbers would result in significant, but very small effects. Results In a total of 130,895 children, of whom 77,173 children (59%) were up to the age of six, we detected an east-west gradient: The eastern regions of Austria showed an older age at first contact and a higher number of dental services. A child aged up to 6 years who needed more than four dental services had a likelihood of 40% to be from Vienna, Austria’s capital city located in the east. The smaller random sample did not show significant gender differences. Conclusions Even in regions with a high density of dentists, such as Vienna, we obviously did not reach young children in the same extent as in other regions. Clinical relevance Stratified interventions could be developed to overcome regional inequalities.

Background Limited evidence exists for intergenerational interventions to promote health and well-being in older adults and preschool children. We therefore aimed to evaluate the implementation, feasibility and outcome of an intergenerational health promotion program based on psycho-motor activity. Methods A multicenter mixed-methods study with preschool children and older adults as equivalent target-groups, and professionals and parents as additional informants was conducted in Austria. The study included a needs assessment, a pilot phase with a formative process evaluation and a subsequent rollout phase to evaluate the outcome and the adapted processes of the intervention program. To analyze the qualitative data, a modified form of the framework method was applied. Quantitative data were collected with a time-sampling method and were analyzed using descriptive and inferential statistical procedures. Results One hundred ninety-six participants (93 older adults [54 to 96 years old, 83% female], 78 children [2 to 7 years old, 58% female], 13 professionals and 12 parents) from 16 institutions (eight kindergartens and eight geriatric facilities) were included in the study. The qualitative process evaluation revealed several aspects for improvement of the intervention program. Well-being as measured by observing spontaneous intergenerational contacts (p

Summary Objective The aims of this article are to provide an overview and discuss current concepts and future trends in outcomes research in non-specific low back pain, specifically considering the perspective of patients, patient-reported outcomes and outcome measures as well as to facilitate knowledge transfer into clinical practice. Review strategy The breadth of this work and the required brevity of this article were not amenable to a formal approach, such as a systematic literature review or a formal scoping review. Literature sources were identified through medical databases but different sources of information and of various methodologies were also included. Furthermore, outcomes meaningful for patients and examples of outcome measures that are applicable in clinical practice were extracted. Areas for future research were identified and discussed. Results Patient-reported outcomes and outcome measures are essential in patient-centered care. The assessment of the patients’ perspective is important to ensure motivation, active involvement, self-management and adherence, especially in non-pharmacological interventions for low back pain. To facilitate the use of outcome measurements for low back pain in clinical practice, future studies should focus on a clinically feasible index, which includes patient-reported as well as clinician-reported or performance-based variables. Relationships between different types of outcomes and outcome measures as well as resource and outcome-based healthcare constitute important topics for future research. New digital technologies can support continuous outcome measurement and might enable new patient-driven models of care. Conclusion Active patient involvement is an essential part of non-pharmacological treatment in low back pain and needs to be considered in terms of outcomes and outcome measurement.

Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie

Objective Japan is the only country in the world that allows abortions due to economic reasons but illegalise them due to foetal anomaly. The objective of this study was to explore the choice-making experiences for prenatal screening among Japanese women and their spouses in Austria. Methods We conducted a qualitative study using semi-structured face-to-face interviews with Japanese women and their spouses in Austria. Data were analysed using thematic analysis. Results Twenty-five participants (14 women and 11 men) took part in the interviews. Four themes were identified: 1) Knowledge, information and memory; 2) Communication and interactions with health professionals; 3) Reasons for choice; and 4) Emotional support. Participants had limited knowledge and experienced directive counselling. Women expressed negative emotions in the choice-making processes, did not perceive husbands as a source of support and lacked a person to consult. Conclusion There are common characteristics among East Asian population despite different context and differences found between our Japanese participants and women in other European countries. Practice implication Proactive interventions aimed at increasing knowledge that help women to develop their preferences and reflect on their values could be further promoted among women of all socio-cultural backgrounds in Austria.

Background It is estimated that 50–70% of patients with rheumatoid arthritis (RA) are non-adherent to their recommended treatment. Non-adherent patients have a higher risk of not reaching an optimal clinical outcome. We explored factors associated with nonadherence from the patient’s perspective. Methods Four hundred and fifty-nine RA patients (346 (75.4%) females; mean age 63.0 ± 14.8 years) who failed to attend follow-up visits in two rheumatology centres were eligible to participate in a qualitative interview study. We used this strategy to identify patients who were potentially non-adherent to medicines and/or non-pharmacological interventions. By means of meaning condensation analysis, we identified new and some already well known insights to factors associated with non-adherence. We used the capability, opportunity, and motivation model of behaviour (COM-B) model as a frame of reference to classify the factors. Results Forty-three of 131 patients (32.8%) who agreed to participate in the qualitative interviews were found to be non-adherent. New insights on factors associated with non-adherence included strong opinions of patients, such as pain being considered as an indicator of hard work and something to be proud of, or inflammation being a natural process that should not be suppressed; feeling not to be in expert’s hands when being treated by a physician/health professional; the experience of excessive self-control over the treatment; and rheumatologists addressing only drugs and omitting non-pharmacological aspects. The COM-B model comprehensively covered the range of our findings. Conclusions The new insights on factors associated with non-adherence allow a better understanding of this phenomenon and can substantially enhance patient care by helping to develop targeted interventions. Electronic supplementary material The online version of this article (10.1186/s13075-018-1732-7) contains supplementary material, which is available to authorized users.

Objective: Little is known about the experiences, values and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs.\ud \ud Methods: A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals who underwent predictive biomarker testing for RA and had a positive test result, but no diagnosis of any inflammatory joint disease, were interviewed. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool (ENAT) as a frame of reference.\ud \ud Results: Thematic saturation was reached in 34 individuals (76% female; 24 [71%] with arthralgia and 10 [29%] asymptomatic individuals). Thirty‐seven codes were summarized into four themes, namely (i) decision making around whether to undergo initial predictive testing, (ii) willingness to consider further predictive tests and/or (iii) preventive interventions, including medication and (iv) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, lay‐understandable information.\ud \ud Conclusion: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education.

It is widely acknowledged that work has huge impact on health and well-being. As people affected by rheumatic and musculoskeletal diseases (RMDs) often have problems in participating in work, they should be supported by the multidisciplinary health care team. Health professionals in rheumatology play an important role in early interventions to support people with RMDs at their work places. This presentation will set out to explore important issues which need to be addressed when enabling people with RMDs to stay employed or return to work from the perspective of health professionals in rheumatology. The presentation will focus on paid work, but also include unpaid work. With reference to ongoing clinical and research work in this field, the author will discuss possibilities and challenges in identifying work related problems, setting goals in a collaborative way, as well as providing different secondary and tertiary preventive strategies, interventions and workplace adaptations. By using a participatory multi-methods approach, facilitating self-management, evaluating and adapting work tasks and the environment, and providing ergonomic devices, people with RMDs can be supported. And as the right time point for doing something for health and more quality of life at the work place is now, some innovative, easy-to-transfer ideas for patients, health professionals and rheumatologists will also be presented. Disclosure of Interest None declared