International Survey Research Articles

An Intersectional Exploration of Outness, Encountered Discrimination and Violence, and Non-Suicidal Self-Injury among Asexual Youth across Gender Identities.

Current research on asexual youth is limited, especially in understanding the impact of their outness and the intersection of sexual orientation with gender minority identities. This study investigates the influence of outness on experiences of harassment, discrimination, violence, and the risk of non-suicidal self-injury (NSSI) among asexual youth, with a focus on those with transgender and non-binary identities. Data for this study were obtained from the 2021 Ace Community Survey, an international online survey designed to assess the needs and health status of the Ace community, targeting respondents aged 13 and older. The analysis involved a subsample of 5574 respondents aged 13 to 24 (mean age = 19.28), including 2361 cisgender (mean age = 19.65), 1,195 transgender (mean age = 18.80), and 2,018 non-binary individuals (mean age = 19.13). The results revealed that experienceds of sexual violence, verbal aggression, and physical harassment and bullying not only correlated with but also completely mediated the relationship between outness and NSSI. Asexual transgender youth experienced heightened levels of discrimination and NSSI but demonstrated notable resilience against the negative effects of identity disclosure, highlighting complex dynamics of vulnerability and protection within these communities.

People with Inflammatory Bowel Disease Prefer Cognitive Behavioral Therapy for Fatigue Management: A Conjoint Analysis.

Psychological interventions are a promising area for fatigue management in patients with inflammatory bowel disease (IBD). However, most interventions trialled to date have been pilots with limited direct input from patients about the type of intervention they want. Thus, this study aimed to explore patient preferences for a psychological IBD fatigue intervention. An international online cross-sectional survey was conducted with adults with self-reported IBD. A conjoint analysis was employed to elicit, through a series of forced-choice scenarios, patient preferences for a fatigue intervention. For this study, the attributes manipulated across these forced-choice scenarios were type of intervention, modality of delivery, and duration of intervention. Overall, 834 people with IBD were included in analysis. Respondents ranked the type of psychological intervention as most important for overall preference (with cognitive-behavioral therapy (CBT) preferred over the other approaches), followed by modality of delivery, but placed very little importance on how long the intervention runs for. Patients with IBD appear to most strongly preference a short online CBT intervention for managing their IBD-related fatigue. This study helps provide therapists and program developers clear direction on patient preferences when it comes to developing new psychological programs that address fatigue in IBD.

Radiation Awareness and X-Ray Use in Cardiology: An International Independent Web-Based Survey

Background. Cardiologists are today exposed to a growing dose of ionising radiation in their practice. Radiation awareness and correct management of X-ray use are the cornerstone to comply with the principles of exposure optimization and justification. Methods and Results. An investigator-initiated international voluntary-based survey including 28 questions was conducted across 19 European countries. 228 cardiologists participated in the survey. Invasive cardiology subspecialties were the most represented (83.6%). Radiation exposure is the cause of personal protective equipment-related orthopaedic injuries (personally or in coworkers) or anxiety in 68.5% and 62.9% of cases, respectively. 38.4% of participants have encountered difficulties in having their institutions recognizing periods off work for exceeding radiation exposure limit (16.3% usually and 22.1% on rare occasions). Gender was not associated with any difference in the answers. Age older than 40 years old was associated with an increased knowledge of personal dosimeter data (71.6% vs. 51.3%, p=0.008). Invasive cardiologists more frequently suffer from orthopaedic injuries (73.0% vs. 44.8%, p=0.006) and show greater participation to radioprotection courses (78.4 vs. 27.6%, p<0.001). Conclusion. European cardiologists show appropriate awareness of the risks associated with X-ray use in medical practice and of the principles guiding a proper management of radiation hazard. However, there is still room for improvement, and institutions should promote risk education policies, which are the basis for the creation and diffusion of a community consciousness on radiation hazard.

European practices on antithrombotic management during percutaneous mechanical circulatory support in adults: an international survey of the ACVC Association of the ESC joint with EuroELSO

Abstract Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Fonds Wetenschappelijk Onderzoek Flanders. Background/introduction Bleeding and thrombotic complications impair the outcomes of patients on percutaneous mechanical circulatory support (pMCS) with veno-arterial extracorporeal membrane oxygenation (V-A ECMO) and/or microaxial flow pumps such as the Impella™. Very recent MCS-trials still show a 23.9% moderate/major bleeding incidence during V-A ECMO. Antithrombotic practices are an important determinant of the meticulous coagulopathic risk management, but guidelines here are non-existing. Purpose Providing an overview of the current European practices in antithrombotic management in adults on pMCS is a first but crucial step to design trials, standardize practice and improve outcome. Methods This online cross-sectional survey was distributed via a digital newsletter and social media platforms through the Association of Acute Cardiovascular Care (ACVC) and the European Extracorporeal Life Support Organization (EuroELSO). The survey was accessible between 17.04 and 23.05.2023. The target population were European clinicians involved in adult critical care and pMCS-management. Results We included responses from 105 different units from 26 European countries. 72.4% Of the European responders have an institutional anticoagulation protocol installed. Unfractionated heparin is the predominantly used anticoagulant (Impella™: 97.0% and V-A ECMO: 96.1%). Argatroban is the preferred alternative in case of heparin-induced thrombocytopenia (Impella™: 52.3% and V-A ECMO: 50.7%). 10.8% And 14.5% of the anticoagulation protocols rely on anti-factor-Xa assay with activated partial thromboplastin time (APTT) in parallel for Impella™ and V-A ECMO, respectively. Up to 43.1% (Impella™) and 32.9% (V-A ECMO) of the European respondents rely on a monitoring strategy with APTT alone. Anticoagulant targets for heparin vary significantly between institutions. 54.0% And 42.7% of the European survey participants administer dual antiplatelet therapy (DAPT) during Impella™ and V-A ECMO support after acute coronary syndrome without percutaneous coronary intervention (PCI), increasing to 93.7% and 84.0% after recent PCI, respectively. Typical thresholds for transfusion or administration of blood products without acute bleeding also vary substantially and are frequently not predefined. Conclusion Large heterogeneity in antithrombotic practices is observed across Europe. Consequently, device-associated coagulopathic complications may largely vary due to non-standardized management and heterogeneity between institutions. This survey underpins the importance of urgent prospective trials investigating important basic questions concerning antithrombotic therapy during pMCS (anticoagulation targets, monitoring strategy, concomitant use of DAPT among others).

A snapshot on current approaches to lymphadenectomy in liver resection for intrahepatic cholangiocarcinoma: results from an international survey.

The use of lymphadenectomy (LND) during resection of intrahepatic cholangiocarcinoma (ICC) is still debated, leading to differing practices in different centers and countries. The aim of this study was to assess such differences. A survey on LND for ICC was distributed to the members of the International Hepato-PancreatoBiliary Association (IHPBA) and the Italian Chapter of IHPBA (AICEP). Two-hundred thirty-four surgeons completed the survey (88% males; median age 46 years). Preoperative nodal staging was deemed mandatory/very important by 65%. Adequate LND was defined as hepatoduodenal ligament LND by 33%, LND at specific nodal stations by 28% and retrieval of > 5 nodes by 28%. The decision to perform LND was influenced by comorbidities (48%), chronic liver disease (38%) and satellitosis (32%). Most participants modify perioperative management in case of clinically positive nodes, 50% stating they would give neoadjuvant therapy. The role of LND in clinically node negative disease was adequate staging for 88%, survival benefit for 50.5% and clinical trials eligibility for 18.5%. Our survey confirms heterogeneity in the evaluation of role and extent of LND for ICC, how this relates to subjective perception of importance of LND, and need of a systematic approach in this area.

The current state of intensive care unit discharge practices - Results of an international survey study

BackgroundIncreasing pressure on limited intensive care capacities often requires a subjective assessment of a patient's discharge readiness in the absence of established Admission, Discharge, and Transfer (ADT) guidelines. To avoid suboptimal care transitions, it is important to define clear guidelines for the admission and discharge of intensive care patients and to optimize transfer processes between the intensive care unit (ICU) and lower care levels. To achieve these goals, structured insights into usual ICU discharge and transfer practices are essential. This study aimed to generate these insights by focusing on involved stakeholders, established processes, discharge criteria and tools, relevant performance metrics, and current barriers to a timely and safe discharge.MethodIn 2022, a structured, web-based, anonymous cross-sectional survey was conducted, aimed at practicing ICU physicians, nurses, and bed coordinators. The survey consisted of 29 questions (open, closed, multiple choice, and scales) that were divided into thematic blocks. The study was supported by several national and international societies for intensive care medicine and nursing.ResultsA total of 219 participants from 40 countries (105 from Germany) participated in the survey. An overload of acute care resources with ~90% capacity utilization in the ICU and the general ward (GW) leads to not only premature but also delayed patient transfers due to a lack of available ward and intermediate care (IMC) beds. After multidisciplinary rounds within the intensive care team, the ICU clinician on duty usually makes the final transfer decision, while one-third of the panel coordinates discharge decisions across departmental boundaries. By the end of the COVID-19 pandemic, half of the hospitals had implemented ADT policies. Among these hospitals, nearly one-third of the hospitals had specific transfer criteria established, consisting primarily of vital signs and laboratory data, patient status and autonomy, and organization-specific criteria. Liaison nurses were less common but were ranked right after the required IMC capacities to bridge the care gap between the ICU and normal wards. In this study, 80% of the participants suggested that transfer planning would be easier if there was good transparency regarding the capacity utilization of lower care levels, a standardized transfer process, and improved interdisciplinary communication.ConclusionTo improve care transitions, transfer processes should be managed proactively across departments, and efforts should be made to identify and address care gaps.

A Global Questionnaire Survey to Understand Human-River Relationships

Urbanization has altered natural waterways, leading to a growing disconnection between humans and rivers and the loss of river culture – the co-evolution of biocultural diversities in riverscapes. To combat this trend, efforts to restore rivers are reintegrating them into urban environments as green-blue infrastructure. Recognizing evolving human-river relationships, this article introduces a GIS-based survey aimed at exploring societal perspectives on the roles of urban rivers, particularly to counter the “extinction of experience” with nature. Drawing on previous studies of public interactions, perceptions and evaluations of urban rivers in France and China, this international survey, available in seven languages and in collaboration with a UNESCO-IHP flagship initiative, the Global Network of Water Museums (WAMU-NET), seeks to promote the development of Urban Human-River Encounter Sites (UHRES). Through comparative analysis, the goal is to foster a harmonious coexistence between humans and biota – an eco-social approach to revive river culture in contemporary cities.

Weaning patients off long-term low dose prednisolone: an international survey of current endocrine practice

Weaning patients off long-term low dose prednisolone: an international survey of current endocrine practice

Patients' perspective on the chronic pain classification in the 11th revision of the International Classification of Diseases (ICD-11): results from an international web-based survey.

The 11th revision of the International Classification of Diseases and Related Health Problems (ICD-11) aims at improving the lives of persons with the lived experience of chronic pain by providing clearly defined and clinically useful diagnoses that can reduce stigma, facilitate communication, and improve access to pain management, among others. The aim of this study was to assess the perspective of people with chronic pain on these diagnoses. An international web-based survey was distributed among persons with the lived experience of chronic pain. After having seen an information video, participants rated the diagnoses on 8 endorsement scales (eg, diagnostic fit, stigma) that ranged from -5 to +5 with 0 representing the neutral point of no expected change. Overall ratings and differences between participants with chronic primary pain (CPP) and chronic secondary pain (CSP) were analyzed. N = 690 participants were included in the data analysis. The ratings on all endorsement scales were significantly higher than the neutral point of 0. The highest ratings were obtained for "openness" (2.95 ± 1.93) and "overall opinion" (1.87 ± 1.98). Participants with CPP and CSP did not differ in their ratings; however, those with CSP indicated an improved diagnostic fit of the new diagnoses, whereas participants with CPP rated the diagnostic fit of the new diagnoses similar to the fit of their current diagnoses. These results show that persons with the lived experience of chronic pain accept and endorse the new diagnoses. This endorsement is an important indicator of the diagnoses' clinical utility and can contribute to implementation and advocacy.

Management of inflammatory bowel disease in the emergency setting: the MIBODI international survey and evidence-based practices.

This study aimed to evaluate the impact of the WSES-AAST guidelines in clinical practice and to investigate the knowledge, attitudes, and practices of emergency surgeons in managing the complications of ulcerative colitis (UC) and Crohn's disease (CD). The MIBODI survey is a cross-sectional study among WSES members designed as an international web-based survey, according to the Checklist for Reporting Results of Internet E-Surveys, to collect data on emergency surgeons' knowledge, attitudes, and practices concerning the management of patients presenting with acute complications of CD and UC. The questionnaire was composed of 30 questions divided into five sections: (1) demographic data, (2) primary evaluation, (3) non-operative management, (4) operative management, and (5) perianal sepsis management. Two hundred and forty-two surgeons from 48 countries agreed to participate in the survey. The response rate was 24.2% (242/1000 members on WSES mail list). Emergency surgeons showed high adherence to recommendations for 6 of the 21 assessed items, with a "correct" response rate greater than or equal to 60%, according to WSES-AAST recommendations. Nine critical issues were highlighted, with correct answers at a rate of less than 50%. Inflammatory bowel disease is a complex disease that requires a multidisciplinary approach with close collaboration between gastroenterologists and surgeons. Emergency surgeons play a crucial role in managing complications related to IBD. One year after publication, the MIBODI study showed significant global implementation of the WSES-AAST guidelines in clinical practice, offering an imperative tool in the improved management of IBD in emergency and urgent settings.

Utilization and perspectives of weight loss medications in pediatric metabolic dysfunction-associated steatotic liver disease.

Metabolic dysfunction-associated steatotic liver disease (MASLD) is increasing globally in pediatric populations. Currently, MASLD management primarily relies on lifestyle interventions, which pose challenges in sustaining long-term weight loss. This study investigated the use of weight loss medications in MASLD care through an international survey of 166 pediatric gastroenterologists and hepatologists. The results indicated a notable interest in weight loss medications, with 38% of practitioners considering or using them, particularly glucagon-like peptide-1 receptor agonists. However, the survey also revealed a tendency among clinicians to refer patients to specialists, emphasizing the potential gap between acknowledgment and prescription practices. Challenges include the lack of guidelines and uncertainty regarding side effects. The study highlights a pressing need for education, with over 90% of the respondents expressing an interest. Our study highlights the current management of MASLD, the potential role of pharmacotherapy, and highlights avenues for improved care and education in this dynamic field.

Risk attitudes of tax practitioners and firm influence

PurposeThe purpose of this paper is to garner a deeper understanding of the site of influence of aspects of risk management for tax practitioners.Design/methodology/approachThe research design is twofold. Phase one consisted of a wide-scale international survey with 1,061 tax experts across 59 jurisdictions. In phase two, the authors followed up with 68 semi-structured interviews with tax practitioners working in 11 different countries.FindingsThe findings recognise the importance of the firm as a significant “site of influence” for tax practitioners in shaping their risk appetite in their tax work. The firm eclipses other influences of risk such as professional body oversight, public interest and demographic markers such as gender and career stage. The authors show that firm is significant, irrespective of size of firm.Practical implicationsThis work has practical implications as the findings highlight the importance of oversight of professional service firms by both the professional accountancy bodies and revenue authorities. The findings may have impact on the ethical training and guidance for trainee accountants in terms of an increased awareness on the employing firm as a site of influence for tax practitioners.Originality/valueThis research is important as it adds to the significant body of work on firm socialisation and highlights the important role that the firm holds in moderating (or exacerbating) the risk appetite of tax practitioners, which has significant implications in terms of pushing the boundaries of tax aggressive behaviours. The work aims to recognise the important role that tax practitioners can have in moderating aggressive tax practice, and, thus, reducing tax inequalities and shaping a better world of “Reduced Inequalities” (SDG10).

Timing of intubation of pediatric hematopoietic cell transplant patients: an international survey

IntroductionRetrospective data suggest that pediatric hematopoietic cell transplant (HCT) patients placed on non-invasive ventilation (NIV) prior to intubation have increased risk of mortality compared to patients who are intubated earlier in their course. The HCT-CI subgroup of the PALISI Network set out to gain a better understanding of factors that influence clinician’s decisions surrounding timing of intubation of pediatric HCT patients.MethodsWe validated and distributed a brief survey exploring potential factors that may influence clinician’s decisions around timing of intubation of pediatric HCT patients with acute lung injury (ALI).ResultsOne hundred and four of the 869 PALISI Network’s members responded to the survey; 97 of these respondents acknowledged caring for HCT patients and were offered the remainder of the survey. The majority of respondents were PICU physicians (96%), with a small number of Advanced Practice Providers and HCT physicians. As expected, poor prognosis categories were perceived as a factors that delay timing to intubation whereas need for invasive procedures was perceived as a factor shortening timing to intubation. Concerns for oxygen toxicity or NIV-associated lung injury were not believed to influence timing of intubation.DiscussionOur survey indicates increased risk of ALI from prolonged NIV and oxygen toxicity in HCT patients are not a concern for most clinicians. Further education of pediatric ICU clinicians around these risk factors could lead to improvement in outcomes and demands further study. Additionally, clinicians identified concerns for the patient’s poor prognosis as a common reason for delayed intubation.

An international survey of contemporary practices towards fertility assessment and preservation in patients undergoing radical inguinal orchidectomy for testicular cancer

AbstractObjectiveThe study aims to assess current international clinician attitudes, practices and barriers towards fertility assessment and preservation in patients undergoing radical inguinal orchidectomy (RIO) for testicular cancer.Materials and methodsAn international online survey of urologists and urologists in training who perform RIO for testicular cancer was developed by the British Association of Urological Surgeons (BAUS) Sections of Andrology and Oncology and the British Urology Researchers in Surgical Training (BURST). The recruitment process used social media and the emailing lists of national urological societies. Responses were collected between 10/02/2021 and 31/05/2021 and stored using password‐protected Research Electronic Data Capture (REDCap) database software. The primary outcome was the proportion of urologists who routinely offer semen cryopreservation prior to RIO. The study was reported according to the Checklist for Reporting Results of Internet E‐Surveys platform.ResultsA total of 393 respondents took part in the online survey; of these, the majority were from the United Kingdom (65.9%), with the remaining international respondents (34.1%) from six different continents, which included 45 different countries. Of the respondents, 57.1% reported that they would routinely offer semen cryopreservation to all patients undergoing RIO for testicular cancer. In addition, 36.0% of urologists routinely performed pre‐operative semen analysis, and 22.1% routinely performed pre‐operative testicular serum hormone profile. Of the respondents, 14.4% performed expedited RIO within 48 h; 31.2% of respondents reported that they considered no delay to RIO to allow for semen cryopreservation to be acceptable.ConclusionsA significant proportion of international urologists do not offer pre‐operative fertility assessment and preservation in men undergoing RIO for testicular cancer. Surgery is performed in an expedited fashion within 1 week in the majority of patients. Urologists perceive there to be a lack of access and availability to fertility services, and that delay to RIO to allow for fertility preservation is often not acceptable.

E057 International survey to evaluate current options and user needs for subcutaneous injection of methotrexate to inform development of a new injection device

Abstract Background/Aims Prefilled syringes (PFS) and various types of pens are available for subcutaneous injection of methotrexate (MTX) in patients with rheumatoid arthritis or moderate to severe psoriasis. To assess the needs of users and the relevance of features of a new MTX autoinjector succeeding the metoject®/metex® PEN, an international online survey was performed. Methods A structured questionnaire was distributed to physicians, nurses and patients in Germany, France, and the United Kingdom. Participants received illustrations of the three MTX devices currently available on the market and were informed about the new MTX autoinjector. Results In total, 189 rheumatologists, 111 dermatologists, 90 nurses, and 180 patients answered the questions. Specific reasons for a preference for the use of MTX pens over PFS could predominantly be assigned to the categories “dosing/administration” and “ease of use”. 82% of physicians, 87% of nurses, and 76% of patients stated a positive first impression of the new button-free MTX autoinjector, respectively. The features rated most relevant by the user groups were a) 2-step autoinjector mechanism (receiving a mean 14.1 to 18.1 points of a total of 100 points), b) small injection volume (9.7 to 11.7 points), c) short injection time below 5 seconds (8.5 to 11.1 points), and d) 10 different doses for dose flexibility (8.0 to 13.2 points). Conclusion Autoinjectors for MTX appear to be preferred over PFS in this international survey. In addition, important features of MTX autoinjectors for patients and healthcare professionals were identified including the autoinjector mechanism, volume of injection and injection time. Disclosure U. Müller-Ladner: Consultancies; U.M.-L. was advisor to medac GmbH. Member of speakers’ bureau; U.M.-L. was speaker to medac GmbH. C. Edwards: Member of speakers’ bureau; C.J.E. has been a speaker for medac. A. Erkens: Other; A.E. has performed strategic market research for medac GmbH.

OA23 Time to address the challenge of difficult-to-treat psoriatic arthritis: results from an international survey

Abstract Background/Aims The term difficult-to-treat psoriatic arthritis (D2TPsA) is increasingly used to describe a small but growing number of patients who fail to respond to multiple biological disease-modifying treatments (bDMARDs). There is, however, no consensus on the scope and treatment of so-called D2TPsA. This study aimed to explore international rheumatologists’ emerging perceptions of the terminology, scope and treatment of D2TPsA Methods A web-based survey consisting of 19 questions, including multiple choice and free text responses was designed, peer-reviewed and piloted by a team of expert rheumatology consultants with a special interest in PsA. The purpose of the survey was to characterise rheumatologist opinions of D2TPsA. The survey was distributed internationally via professional organisations, mailing lists and social media between 1st June - 31stJuly 2023. Results were analysed using R Studio. Results Two-hundred and forty-four (244) rheumatologists responded to the survey across 5 continents (Europe=79.4%, South America=11.5%, Asia=3.7%, North America=3.3%, Australia=0.8%). The majority (96.2%) were aged 30-69, therefore reflecting opinions spanning the entirety of the workforce, including junior trainees and senior consultants. Most (72.5%) worked in academic/teaching institutions and 37.5% cared for >300 PsA patients in their service. Despite this, only 20.5% of clinicians worked in a combined rheumatology/dermatology service.[HMO1] There was a range of opinion on what constituted D2TPsA, the most popular definition being failure of ≥ 2 b/tsDMARD classes (34.8%) with 68.3% wanting failure of ≥ 1 csDMARD to be included. Considering the subgroup with true resistant or refractory disease, 74.3% supported a more pragmatic definition, that being “failure of all available bDMARD classes”. Nearly all respondents felt that “low disease activity” was a more realistic target to achieve than “remission” (86.5%). There was disagreement on use of single (38.1%) vs. composite measures (40.6%) for the assessment of disease activity, and thus treatment response. Of note, 41% preferred the term “difficult-to-manage” as opposed to “difficult-to-treat” as this would encompass factors other than drug non-response such as presence of comorbidities, mental health and lack of efficacy. Others suggested that a holistic approach to the diagnosis and management of D2TPsA was important. Yet, most physicians felt that the diagnosis and treatment of D2TPsA should include reference to relevant physical and psychosocial comorbidities such as cardiometabolic disease, mental health, infection and malignancy. Conclusion This survey showcases the breadth of rheumatologist opinions of what may constitute D2T PsA, highlighting commonalities and disagreements in the terminology. These now require further discussion and debate in a consensus working group including allied specialties and patient representatives in order to agree a standardized definition for D2TPsA to be used in the clinical and research settings and enable guidelines and management pathways to be developed. Disclosure H. Marzo-Ortega: Honoraria; HMO recieved honoraria/speaker fees from AbbVie, Biogen, Eli-Lily, Janssen, Moonlake, Novartis, Pfizer, Takeda and UCB. Grants/research support; HMO received grant support from Janssen, Novartis and UCB. S.R. Harrison: Honoraria; SRH recieved fees from Novartis and Janssen to give a non-promotional educational lecture. Other; SRH received support from UCB and Janssen to attend EULAR conference. G. Nagy: Honoraria; •GN has received consulting/speaker’s fees from Abbvie, Amgen, Astra Zeneca, Lilly, Janssen, Miltényi, Novartis, Pfizer, Richter, Roche, Sobi and Swixx. P.M. Machado: Honoraria; PMM has received consulting/speaker’s fees from Abbvie, BMS, Celgene, Eli Lilly, Galapagos, Janssen, MSD, Novartis, Orphazyme, Pfizer, Roche and UCB. D.G. McGonagle: None. S.Z. Aydin: Consultancies; SZA received consultancy feeds from: AbbVie, Janssen, Lilly, Novartis, Pfizer, Fresenius-Kabi, UCB. Grants/research support; SZA received research grants from AbbVie, Lilly, Novartis, UCB, Pfizer, Fresenius-Kabi. R. Almodovar: Honoraria; RA has received consulting/speaker’s fees from Abbvie, Almirall, Amgen, Galápagos, Gebro, Janssen, Lilly, MSD, Nordic, Novartis, Pfizer, UCB. W. Bautista-Molano: None. L. Gossec: Consultancies; LG recieved consultancy fees from: AbbVie, Amgen, BMS, Celltrion, Galapagos, Janssen, Lilly, MSD, Novartis, Pfizer, Sandoz, UCB. Grants/research support; LG received research grants from: AbbVie, Biogen, Lilly, Novartis, UCB. E. Lobrano: None. P. Nash: None. F. Pimentel dos Santos: None. E. Soriano: Consultancies; ERS has received consulting/speaker’s fees and/or grant support from Abbvie, Amgen, BMS, Lilly, Janssen, Novartis, Pfizer, Roche and UCB. S. Siebert: Consultancies; SS has recieved consultancy/ speakers fees from: consultancy/speaker fees from AbbVie, Amgen, AstraZeneca, Eli Lilly, GSK, Janssen, UCB. Grants/research support; SS has received institutional research grants from Amgen, Boehringer Ingelheim, Bristol Myers Squibb, Eli Lilly, GSK, Janssen and UCB.

OA19 Self-reported prevalence and impact of clinical signs, symptoms and events in adults with osteogenesis imperfecta

Abstract Background/Aims The IMPACT survey explored self-reported experiences of the clinical, humanistic, and economic impact of osteogenesis imperfecta (OI), a rare hereditary connective tissue disorder associated with low bone mass, bone fragility and variable secondary features. Here we present findings on OI-related signs, symptoms and events and their impact on adults with OI both globally and in the United Kingdom (UK). Methods Together with the Osteogenesis Imperfecta Federation Europe and the Osteogenesis Imperfecta Foundation (USA) we developed an international survey in eight languages (fielded online July-September 2021). The survey was open to adults (aged ≥18 years) or adolescents (aged ≥12-17 years) with OI, caregivers (with or without OI) of individuals with OI and other close relatives; overall 2,278 individuals participated. Survey domains included demographics, socioeconomic factors, clinical characteristics, treatment patterns, quality of life (QoL) and health economics. Non-English language responses were translated into English. Data were cleaned, coded, and analysed using Microsoft Excel. Results 1,440 adult respondents (70.0% females, mean age 43 years) described their OI as mild (35.2%), moderate (46.6%) and severe (14.2%). Additionally, type 1 (37.7%), 3 (15.6%) and 4 (11.0%) OI were most frequently reported. Over a 12-month period, the most frequently reported clinical signs, symptoms and events were pain (81.8%), ranked as moderately or severely impactful by 68.0% of individuals who had experienced it, fatigue (66.9%), which moderately-severely impacted 69.1% and soft tissue problems or injuries (including muscle, tendon, ligament; 54.8%), which moderately-severely impacted 71.2%. While nearly one-third (27.4%) of adults experienced fractures, almost two-thirds (64.7%) of them ranked the symptom as moderately or severely impactful. In comparison, in the UK (n = 144 adults; 73.6% women, mean age 47 years), over a third (36.8%) of adults reported experiencing a fracture, with nearly three-quarters (73.6%) ranking it as moderately or severely impactful. Leg fractures were more commonly reported (mean 0.3 fractures, standard deviation [SD] 2.2) among adults in the overall survey population compared with rib (mean 0.3, SD 1.1), vertebral (mean 0.2, SD 0.9) or arm (mean 0.1, SD 1.0) fractures. In contrast, the most prevalent fracture type among the UK cohort were rib fractures (mean 0.4, SD 1.1). Across all QoL domains, the impact of OI was greater among individuals who had experienced fractures, compared with those who had not. Additionally, demographic and clinical factors such as sex, OI severity, OI type and the experience of fractures were identified as drivers of QoL impact. Conclusion Adults with OI experience a wide range of OI-related clinical signs, symptoms and events. Irrespective of an individual's characteristics, fractures are associated with worsened QoL. Further analysis will elucidate the impact of this complex condition and provide insights into areas of improvement of treatment, care and policy making. Disclosure O. Semler: Other; O.S. has participated in a national advisory board for Mereo BioPharma Group London, United Kingdom. L.L. Wekre: None. I. Westerheim: Other; I.W holds leadership positions in the Osteogenesis Imperfecta Federation Europe, which has received grants from Mereo BioPharma Group, London, United Kingdom (unrestricted), Ultragenyx Pharmaceuticals Inc, Novato, USA (restricted grant for a conference), Quince Therapeutics Inc, San Francisco, CA, USA (donation for a conference), UCB (restricted grant to conference), Angitia Biopharmaceuticals Inc., Woodland Hills, CA, USA (donation to conference), Azafaros BV, Naarden, the Netherlands (donation to conference), Alexion Inc. Boston, MA, USA, (sponsorship of conference); Pega Medical Inc, Laval, Quebec, Canada (donation), Sanofi S.A. Paris, France (payment to IW for engagement in steering committee; donated to OIFE), I.W. has also received payment as a panellist from Takeda, Tokyo, Japan. T.V. Welzenis: None. C. Raggio: Grants/research support; C.R. has received an institutional grant from and has been a speaker for BioMarin Pharmaceuticals Inc, Novato, California, C.R has received an institutional grant from and is a consultant for Nextcure, Beltville, MD, USA. Other; C.R. has participated in advisory boards for Ultragenyx Pharmaceuticals Inc, Novato, USA, CR sits on the board of directors of the Osteogenesis Imperfecta Foundation and on the medical board of the Osteogenesis Imperfecta Federation Europe, CR has also participated in an advisory board for Mereo BioPharma Group, London, United Kingdom. T. Hart: Grants/research support; TH has received unrestricted educational grants from Mereo BioPharma Group London, United Kingdom and Ultragenyx Pharmaceuticals Inc, Novato, USA. Other; T.H. serves as the Chief Executive Officer of the Osteogenesis Imperfecta Foundation. R. Dadzie: Other; R.D. is an employee of Wickenstones Ltd. L. Dewavrin: Other; L.D. is an employee of Wickenstones Ltd. S. Prince: Other; S.P. is an employee of Wickenstones Ltd. F. Rauch: Other; F.R. has received study contracts for experimental preclinical studies with Precithera Inc, Quebec, Canada, Mesentech Inc, Vancouver, Canada and Catabasis Pharmaceuticals Inc, Cambridge, USA, F.R. has participated in advisory boards for Ultragenyx Pharmaceuticals Inc, Novato, USA, Sanofi S.A. Paris, France, Novartis International AG, Basel, Switzerland and Mereo BioPharma Group, London, United Kingdom, F.R. has received a speaker fee from Ultragenyx Pharmaceuticals Inc, Novato, USA for a lecture and received a donation of experimental drugs for a preclinical study from Acceleron Pharma Inc, Cambridge, USA.

Survey of Ventilator Waveform Interpretation Among ICU Professionals.

The interpretation of ventilator waveforms is essential for effective and safe mechanical ventilation but requires specialized training and expertise. This study aimed to investigate the ability of ICU professionals to interpret ventilator waveforms, identify areas requiring further education and training, and explore the factors influencing their interpretation skills. We conducted an international online anonymous survey of ICU professionals (physicians, nurses, and respiratory therapists [RTs]), with ≥ 1 y of experience working in the ICU. The survey consisted of demographic information and 15 multiple-choice questions related to ventilator waveforms. Results were compared between professions using descriptive statistics, and logistic regression (expressed as odds ratios [ORs; 95% CI]) was performed to identify factors associated with high performance, which was defined by a threshold of 60% correct answers. A total of 1,832 professionals from 31 countries or regions completed the survey; 53% of respondents answered ≥ 60% of the questions correctly. The 3 questions with the most correct responses were related to waveforms that demonstrated condensation (90%), pressure overshoot (79%), and bronchospasm (75%). Conversely, the 3 questions with the fewest correct responses were waveforms that demonstrated early cycle leading to double trigger (43%), severe under assistance (flow starvation) (37%), and early/reverse trigger (31%). Factors significantly associated with ≥ 60% correct answers included years of ICU working experience (≥ 10 y, OR 1.6 [1.2-2.0], P < .001), profession (RT, OR 2.8 [2.1-3.7], P < .001), highest degree earned (graduate, OR 1.7 [1.3-2.2], P < .001), workplace (teaching hospital, OR 1.4 [1.1-1.7], P = .008), and prior ventilator waveforms training (OR 1.7 [1.3-2.2], P < .001). Slightly over half respondents correctly identified ≥ 60% of waveforms demonstrating patient-ventilator discordance. High performance was associated with ≥ 10 years of ICU working experience, RT profession, graduate degree, working in a teaching hospital, and prior ventilator waveforms training. Some discordances were poorly recognized across all groups of surveyed professionals.

Management of malignant Gastric Outlet Obstruction (mGOO) due to pancreatic cancer in the era of EUS-Gastrojejunostomy: an international practice survey and case vignette study by Pancreas 2000 from the European Pancreatic Club.

Malignant Gastric Outlet Obstruction (mGOO) has been standardly treated by surgical Gastrojejunostomy (S-GJ) or Endoscopic Stenting (ES). Recently, EUS-Gastrojejunostomy (EUS-GJ) has emerged as an alternative, despite its worldwide diffusion is heterogeneous. The aim of this survey was to assess clinical decision-making around mGOO and to explore current opinions regarding EUS-GJ. An online survey, spread through social networks and EPC newsletter, was created exploring opinions regarding indications, contraindications, benefits/risks, availability of mGOO treatments; 2 case vignettes explored clinical decision-making in different scenarios. Overall, 290 pancreatologists from 44 countries responded, of whom 35% surgeons and 65% gastroenterologists. The most common treatment for mGOO was ES (86%), followed by laparoscopic GJ (76%). EUS-GJ was accessible to 59% of respondents, with 10% proficient in this technique. Gold-standard treatment for mGOO varied by specialty; 45% of gastroenterologists preferred ES, 20% EUS-GJ, and 10% surgical GJ, while among surgeons, these were 24%, 8%, and 25%, respectively. A higher annual volume of mGOO treated correlated with increased EUS-GJ adoption and reduced surgical advice. For 51%, EUS-GJ will become the primary treatment for mGOO, notably higher among gastroenterologists and high-volume centers. For 14%, EUS-GJ spread will be limited in the future, or used only when ES fails (19%). Life expectancy, disease stage and patient's frailty are the main decision driver in therapeutic choice, whereas future surgical resectability does not contraindicate any treatment for 75%. EUS-GJ's main advantages were its minimally invasive nature and clinical efficacy, offset by its steep learning curve. This survey revealed significant differences in the management of mGOO, depending on specialties, local expertise and treatment volume, suggesting the lack of standardized algorithms. Life expectancy and patients' frailty are the main decision drivers. Regarding EUS-GJ, its availability remains suboptimal, with learning curve as the main perceived barrier.

Protocol for the development of a core outcome set and reporting guidelines for locoregional treatment in neoadjuvant systemic breast cancer treatment trials: the PRECEDENT project

IntroductionNeoadjuvant systemic anticancer therapy (neoSACT) is increasingly used in the treatment of early breast cancer. Response to therapy is prognostic and allows locoregional and adjuvant systemic treatments to be tailored...