International Web-based Survey Research Articles

Knowledge, attitudes and practices of using Indocyanine Green (ICG) fluorescence in emergency surgery: an international web-based survey in the ARtificial Intelligence in Emergency and trauma Surgery (ARIES)-WSES project.

Fluorescence imaging is a real-time intraoperative navigation modality to enhance surgical vision and it can guide emergency surgeons while performing difficult, high-risk surgical procedures. The aim of this study is to assess current knowledge, attitudes, and practices of emergency surgeons in the use of indocyanine green (ICG) in emergency settings. Between March 08, 2023 and April 10, 2023, a questionnaire composed of 27 multiple choice and open-ended questions was sent to 200 emergency surgeons who had previously joined the ARtificial Intelligence in Emergency and trauma Surgery (ARIES) project promoted by the WSES. The questionnaire was developed by an emergency surgeon with an interest in advanced technologiesand artificial intelligence. The response rate was 96% (192/200). Responders affirmed that ICG fluorescence can support the performance of difficult surgical procedures in the emergency setting, particularly in the presence of severe inflammation and in evaluating bowel viability. Nevertheless, there were concerns regarding accessibility and availability of fluorescence imaging in emergency settings. Eighty-seven out of 192 (45.3%) respondents have a fluorescence imaging system of vision for both elective and emergency surgical procedures; 32.3% of respondents have this system solely for elective procedures; 21.4% of respondents do not have this system, 15% do not have experience with it, and 38% do not use this imaging in emergency surgery. Less than 1% (2/192) affirmed that ICG fluorescence changed always their intraoperative decision-making. Precision surgery effectively tailors surgical interventions to individual patient characteristics using advanced technology, data analysis and artificial intelligence. ICG fluorescence can serve as a valid and safe tool to guide emergency surgery in different scenarios, such as intestinal ischemia and severe acute cholecystitis. Due to the lack of high-level evidence within this field, a consensus of expert emergency surgeons is needed to encourage stakeholders to increase the availability of fluorescence imaging systems and to support emergency surgeons in implementing ICG fluorescence in their daily 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.

Benchmarking Relevance for Hospital Design and Planning: An International Web-Based Survey.

The study aims to investigate what design practitioners and healthcare facility managers deem as important benchmarking metrics worldwide, investigating country differences in benchmarking usage and which metrics are prioritized. Benchmarking is a regular practice in the healthcare sector, both for clinical and managerial aspects to compare, measure, and improve standardized processes. However, limited knowledge is available about benchmarking procedures in hospital planning, design, and construction. A web-based survey was designed, revised, and pilot-tested in five countries; it was adjusted according to local experts' suggestions and submitted globally via SoSci multilingual platform to persons involved in hospital design, research, construction, and facility management. It was composed of closed questions on 5-point Likert-type scale ranking frequency or importance and open-ended questions divided into six sections. Two hundred and eighty full responses have been collected. Statistical analysis was performed via PowerBI and R-Studio, while qualitative analysis was performed via MAXQDA. The findings reported allow for both specific insights per each country or category as well as enabling general considerations of a practice that is becoming always more international with 30%-50% of respondents working in the international context. The evaluation of the survey highlights the most important benchmarks, among others. For example, for respondents from the top five countries (Sweden, Spain, Germany, Italy, and the United States), the most important metric for benchmark comparability is whether the project was new construction, new construction attached to an existing hospital, or interior renovation. Construction date, client type (public vs. private), and country of location were also generally rated as the most important metrics by respondents. Other metrics that were consistently rated as important globally included inpatient unit layout, walking distances, number of floors, and whether all patient rooms are private. Space-related metrics are considered very important elements in the design and planning of healthcare facilities worldwide. Regarding cost-related metrics, all countries consider the ratio construction cost per building gross area as the most important. Benchmarking emerges as a relevant tool for hospital design and planning as it can support efficiency, standardization, and confidence; currently, benchmarking is still underutilized due to the challenge of international comparison, access to data outside each specific company, and variation design metrics nationally. Benchmarking strategies should be further investigated to support knowledge exchange and to ensure reliable and comparable information globally.

Consumption Patterns of Benzodiazepines and Opioids Drawn from an Online Survey in the Early COVID-19 Pandemic

Abstract: Aims: Investigation of altered consumption patterns of benzodiazepines and opioids during the early COVID-19 pandemic. Methods: The study sample was extracted from an international web-based survey provided from April to August 2021 in 5 languages; completed by 5049 participants. A retrospective exploration of sociodemographic features, frequencies and dosages of benzodiazepine and opioid use and psychopathology was executed. Quantities of the respective substance use and consumers’ motivations for consumption pre-pandemic versus during the pandemic were compared. Associations between quantities, psychopathology, and positive effects of the substances, negative sequelae and concerns related to COVID-19 were examined. Results: A significant reduction of the consumption quantity was solely found for heroin users. Higher benzodiazepine consumption rates during the pandemic were marginally associated with a greater general psychopathology. Concerns related to the COVID-19 crisis were significantly positively correlated with the symptomatologies of the opioid and benzodiazepine users who presented a higher perception of life restriction. A significant reduction of reported motivations consumption was found for the motive partying. Conclusions: During the early COVID-19 pandemic the quantities and motives of consumption of sedatives and opioids remained mostly stable. The psychopathology of consumers was associated with specific concerns related to the pandemic.

Variability in approach to exercise stress echocardiography for diagnosis of heart failure with preserved ejection fraction: an international survey on real-world practice

Abstract Aims The diagnosis of heart failure with preserved ejection fraction (HFpEF) remains challenging based on resting assessments. Exercise echocardiography is often used to unmask abnormalities that develop during exercise, but the diagnostic criteria have not been standardized. This study aimed to elucidate how cardiologists utilize exercise echocardiography to diagnose HFpEF in real-world practice. Methods and results An international web-based survey involving 87 cardiologists was performed. We also performed a retrospective cross-sectional study to investigate the impact of different exercise echocardiographic diagnostic criteria in 652 dyspnoeic patients who underwent exercise echocardiography. The HFA-PEFF algorithm was the most commonly used exercise echocardiography criterion for HFpEF diagnoses (48%), followed by the ASE/EACVI criteria (24%) and other combinations of multiple parameters (22%). Among 652 patients, the proportion of HFpEF diagnosis varied substantially according to the criteria used ranging from 20.1% (ASE/EACVI criteria) to 44.3% (HFA-PEFF algorithm). Many cases (49.4–70.5%) remained indeterminate after exercise echocardiography, but only 41% of surveyed cardiologists would utilize exercise right heart catheterization to resolve an indeterminate result. Despite these diagnostic uncertainties, 54% of surveyed cardiologists would utilize exercise echocardiography results to initiate sodium–glucose co-transporter 2 inhibitors. Conclusion In real-world practice, exercise echocardiographic criteria utilized across cardiologists vary, which meaningfully impacts the frequency of HFpEF diagnoses, with indeterminate results being common. Despite these diagnostic uncertainties, many cardiologists initiate pharmacotherapy based on exercise echocardiography. The lack of consensus on universal diagnostic criteria for exercise echocardiography and approaches to indeterminate results may limit the delivery of evidence-based treatment for HFpEF.

Fatigue and associated factors in 172 patients with McArdle disease: An international web-based survey

McArdle disease is an autosomal recessive inherited disease caused by pathogenic variants in the PYGM gene, resulting in virtual absence of the myophosphorylase enzyme in skeletal muscle. Patients experience physical activity intolerance, muscle pain, and muscle fatigue. This study aimed to investigate other fatigue domains with the Multidimensional Fatigue Inventory (MFI-20) along with an investigation of potential contributing factors, including relevant disease and lifestyle-related factors. We conducted a survey in an international cohort of patients with McArdle disease. The survey included questions on demographics and McArdle disease-related symptoms, and the questionnaires: MFI-20, Insomnia Severity Index (ISI), and International Physical Activity Questionnaire Short-Form (IPAQ-SF). One hundred seventy-four responses were included in the data analyses. We found relatively high fatigue scores in all five domains (general fatigue (12.9 ± 2.2), mental fatigue (10.1 ± 4.1), physical fatigue (13.7 ± 4.1), reduced activity (12.1 ± 4.1), and reduced motivation (10.4 ± 3.4)). Fatigue associated with McArdle symptom severity (p < 0.005), lower levels of physical activity (assessed by IPAQ-SF) (p < 0.05), and poor sleep (assessed by ISI) (p < 0.05). These findings call for clinical focus and future research into fatigue, sleep and mental health in patients with McArdle disease.

Diet-Nutrition Information Seeking, Source Trustworthiness, and Eating Behavior Changes: An International Web-Based Survey.

To understand the extent to which different sources of diet and nutrition information are sought, trusted, and relied upon for making dietary changes, the present international web-based survey study gauged participants' (n = 3419) diet-nutrition information-seeking behaviors from 22 interpersonal and general sources with varying quality, trust levels in these sources, and reliance on each source for making dietary changes. Qualitative insights were also captured regarding trustworthiness formation. The results revealed a disconnect between source popularity and perceived trustworthiness. While nutrition-health websites, Google-Internet searches, and diet-health books were most commonly consulted, participants placed the highest level of trust in nutrition scientists, nutrition professionals, and scientific journals, suggesting that frequent information seeking from a subpar source may not be a reliable predictor of the level of trust assigned to it. Although the frequency of source-seeking behaviors and source trustworthiness both contributed to dietary changes, the latter appeared to have a more pronounced influence. When a source was less trusted, there was a reduced likelihood of relying on it for changing diet. Additionally, source seeking may not always translate into effective dietary change, as shown by the less strong correlation between the two. These associations significantly differed depending on the source.

P348 Fatigue and associated factors in 172 patients with McArdle disease: an international web-based survey

P348 Fatigue and associated factors in 172 patients with McArdle disease: an international web-based survey

Measuring Behaviors for Assessing Design Expertise: A Comprehensive Framework for Professional Development

Increasing attention has been paid to understanding expert design behavior to help novice students enhance their knowledge and abilities for their professional development. However, an integrative framework must still be created to identify expert-based design behavior. Using an international web-based survey, this study identifies major expert design behaviors, and reports on the development of a unique behavioral multiple scale that measures central behaviors in the design process for assessing design expertise. Considering theoretically grounded behaviors of experts in the design literature, a 29-item scale is formulated for capturing key expert design behaviors based on exploratory factor analysis. Evidence for construct validity and reliability is presented, suggesting seven primary expert diversified behaviors in the design process. Nevertheless, using a structural equation modeling, it is concluded that the behavioral multiple scale represents only six significant behaviors of design expertise. Moreover, a path analysis of this comprehensive framework shows that some behaviors are central, directly related to design expertise (i.e., strategic approach to design complexity and framing of design problems), and act as mediators for other behaviors (i.e., reflection on design problems and solutions, systematically breaking the design into sub-problems, application of conceptual thinking, and reuse of previous solutions). Findings can be implemented by intervention programs in the design studio aiming to support professional development in design education by training students to enhance their expertise.

Decongestion strategies in patients presenting with acutely decompensated heart failure: A worldwide survey among physicians.

Decongestion strategies for acute decompensated heart failure (ADHF) characterized by volume overload differ widely. The aim of this independent international academic web-based survey was to capture the therapeutic strategies that physicians use to treat ADHF and to assess differences in therapeutic approaches between cardiologists versus non-cardiologists. Physicians were invited to complete a web-based questionnaire, capturing anonymized data on physicians' characteristics and treatment preferences based on a hypothetical clinical scenario of a patient hospitalized with ADHF. A total of 641 physicians from 60 countries participated. A wide variation in the management of the patient was observed. There was conservative use of diuretics, i.e. only 7% started intravenous furosemide at a dose ≥2 times the baseline oral dose, and infrequent use of ultrasound in assessing congestion (20.4%). Spot urinary sodium was infrequently or never measured by ≥85% of physicians. A third considered a patient with ongoing oedema as being stabilized. There were significant differences between cardiologists and non-cardiologists in the management of ADHF, the targets for daily body weight loss and urine output, diuretic escalation strategies (66.3% vs. 40.7% would escalate diuresis by adding a thiazide) and assessment of response to treatment (27.0% vs. 52.9% considered patients with minimal congestion as stabilized). There is substantial variability amongst physicians and between cardiologists and non-cardiologists in the management of patients with ADHF, with regard to clinical parameters used to tailor treatment, treatment goals, diuretic dosing and escalation strategies.

Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Antisynthease syndrome (ASSD) is a rare, complex and understudied autoimmune disease. Internet-based studies can overcome barriers of traditional on-site research and are therefore very appealing for rare diseases. The aim of this study was to investigate patient-reported symptoms, diagnostic delay, symptoms, medical care, health status, working status, disease knowledge and willingness to participate in research of ASSD patients by conducting an international web-based survey. The multilingual questionnaire was created by an international group of rheumatologists and patients and distributed online. 236 participants from 22 countries completed the survey. 184/236 (78.0%) were female, mean age (SD) was 49.6 years (11.3) and most common antisynthetase antibody was Jo-1 (169/236, 71.6%). 79/236 (33.5%) reported to work full-time. Median diagnostic delay was one year. The most common symptom at disease onset was fatigue 159/236 (67.4%), followed by myalgia 130/236 (55.1%). The complete triad of myositis, arthritis and lung involvement verified by a clinician was present in 42/236 (17.8%) at disease onset and in 88/236 (37.3%) during the disease course. 36/236 (15.3%) reported to have been diagnosed with fibromyalgia and 40/236 (16.3%) with depression. The most reported immunosuppressive treatments were oral corticosteroids 179/236 (75.9%), followed by rituximab 85/236 (36.0%). 73/236 (30.9%) had received physiotherapy treatment. 71/236 (30.1%) reported to know useful online information sources related to ASSD. 223/236 (94.5%) were willing to share health data for research purposes once a year. Our results reiterate that internet-based research is invaluable for cooperating with patients to foster knowledge in rare diseases.

Chest wall perforator flaps for breast reconstruction: international survey on attitudes and training needs.

Volume replacement using chest wall perforator flaps (CWPFs) is a promising technique to reduce mastectomy rates without sacrificing function or aesthetics. Owing to limited availability of the technique, only a minority of patients currently have access to CWPF procedures. An international web-based survey was disseminated through social media, dedicated webpages, and national and international societies for breast surgery. The survey explored surgeons' attitudes towards CWPFs and their perceived training needs. Of 619 respondents, 88.4 per cent agreed that CWPF surgery was desirable, with one-third offering it and performing a median of 10 (i.q.r. 5-15) procedures annually. They were more likely to be senior (OR 1.35, 95 per cent c.i. 1.18 to 1.55; P < 0.001), with formal oncoplastic training (OR 4.80, 3.09 to 7.48; P < 0.001), and working in larger units (OR 1.18, 1.03 to 1.35; P = 0.018) with a free-flap (OR 1.62, 1.06 to 2.48; P = 0.025) or CWPF (OR 3.02, 1.87 to 4.89; P < 0.001) service available. In cluster and latent class analysis, none showed high cohesion with performance of CWPF surgery. There is a discrepancy between perceived importance and availability of CWPF surgery, indicating that optimal training is needed.

Factors Predicting Quality of Life Impairment in Adult Patients with Atopic Dermatitis: Results from a Patient Survey and Machine Learning Analysis.

Atopic dermatitis (AD) is a chronic, inflammatory skin disorder that impairs patients' quality of life (QoL). Physician assessment of AD disease severity is determined by clinical scales and assessment of affected body surface area (BSA), which might not mirror patients' perceived disease burden. Using data from an international cross-sectional web-based survey of patients with AD and a machine learning approach, we sought to identify disease attributes with the highest impact on QoL for patients with AD. Adults with dermatologist-confirmed AD participated in the survey between July-September 2019. Eight machine learning models were applied to the data with dichotomised Dermatology Life Quality Index (DLQI) as the response variable to identify factors most predictive of AD-related QoL burden. Variables tested were demographics, affected BSA and affected body areas, flare characteristics, activity impairment, hospitalisation and AD therapies. Three machine learning models, logistic regression model, random forest and neural network, were selected on the basis of predictive performance. Each variable's contribution was computed via importance values from 0 to 100. For relevant predictive factors, further descriptive analyses were conducted to characterise those findings. In total, 2314 patients completed the survey with mean age 39.2years (standard deviation 12.6) and average disease duration of 19years. Measured by affected BSA, 13.3% of patients had moderate-to-severe disease. However, 44% of patients reported a DLQI > 10, indicative of a very large to extremely large impact on QoL. Activity impairment was the most important factor predicting high QoL burden (DLQI > 10) across models. Hospitalisation during the past year and flare type were also highly ranked. Current BSA involvement was not a strong predictor of AD-related QoL impairment. Activity impairment was the single most important factor for AD-related QoL impairment while current extent of AD did not predict higher disease burden. These results support the importance of considering patients' perspectives when determining the severity of AD.

Would Surgeons Like to Be Submitted to Anal Fistulotomy? An International Web-Based Survey.

Traditional fistulotomy is the most performed surgical procedure in anal fistula surgery. We conducted an international online survey to explore colorectal surgeons' opinions and preferences on fistulotomy. Considering the healing and continence impairment rates reported in the literature, surgeons were invited to answer as a hypothetic patient susceptible to being submitted to fistulotomy for low and high anal fistula. A total of 767 surgeons completed the survey from 72 countries. The majority of respondents were consultants, having treated more than 20 anal fistulas in the last year. Most of them declared that anal fistula would be able to negatively affect quality of life and would be worried/anxious about it. Taking into account all aspects, 87.5% and 37.8% of respondents would agree to be treated with a fistulotomy in case of a low and high fistula, respectively, with an acceptance rate that varied worldwide. At multivariate analysis, factors correlated to the acceptance of anal fistulotomy were male gender (p = 0.003), practice of less than 20 fistula operations during last year (p = 0.020), and low fistula (p < 0.001). Surgeons recognized the extreme complexity of this approach. This study highlighted the necessity of an accurate patients' selection and the adoption of alternative strategy to reduce the risk of anal continence impairment.

Susceptibility to COVID-19 Nutrition Misinformation and Eating Behavior Change during Lockdowns: An International Web-Based Survey

To understand the susceptibility to nutrition-health misinformation related to preventing, treating, or mitigating the risk of COVID-19 during the initial lockdowns around the world, the present international web-based survey study (15 April-15 May 2020) gauged participants' (n = 3707) level of nutrition-health misinformation discernment by presenting them with 25 statements (including unfounded or unproven claims circulated at the time), alongside the influence of information sources of varying quality on the frequency of changes in their eating behavior and the extent of misinformation held, depending on the source used for such changes. Results revealed widespread misinformation about food, eating, and health practices related to COVID-19, with the 25 statements put to participants receiving up to 43% misinformed answers (e.g., 'It is safe to eat fruits and vegetables that have been washed with soap or diluted bleach'). Whereas higher quality information sources (nutrition scientists, nutrition professionals) had the biggest influence on eating behavior change, we found greater misinformation susceptibility when relying on poor quality sources for changing diet. Appropriate discernment of misinformation was weakest amongst participants who more frequently changed their eating behavior because of information from poor quality sources, suggesting disparities in the health risks/safety of the changes performed.

Risks and benefits of psilocybin use in people with bipolar disorder: An international web-based survey on experiences of 'magic mushroom' consumption.

Psilocybin, the primary psychoactive component of psychedelic 'magic mushrooms', may have potential for treating depressive symptoms, and consequent applications for bipolar disorder (BD). Knowledge of the risks and benefits of psilocybin in BD is limited to case studies. To support the design of clinical trials, we surveyed experiences of psilocybin use in people with BD. An international web-based survey was used to explore experiences of psilocybin use in people with a self-reported diagnosis of BD. Quantitative findings were summarised using descriptive statistics. Qualitative content analysis was used to investigate free-text responses, with a focus on positive experiences of psilocybin use. A total of 541 people completed the survey (46.4% female, mean 34.1 years old). One-third (32.2%; n = 174) of respondents described new/increasing symptoms after psilocybin trips, prominently manic symptoms, difficulties sleeping and anxiety. No differences in rates of adverse events overall were observed between individuals with BD I compared to BD II. Use of emergency medical services was rare (n = 18; 3.3%), and respondents (even those who experienced adverse effects) indicated that psilocybin use was more helpful than harmful. Quantitative findings elaborated on perceived benefits, as well as the potential for psilocybin trips to contain both positively and negatively received elements. The subjective benefits of psilocybin use for mental health symptoms reported by survey participants encourage further investigation of psilocybin-based treatments for BD. Clinical trials should incorporate careful monitoring of symptoms, as data suggest that BD symptoms may emerge or intensify following psilocybin use.

Gender and Generational Divide Between Surgeons Regarding Preoperative Palliative Care Referral for Patients with Resectable Pancreatic Cancer: Results from an International Survey

INTRODUCTION: Preoperative palliative care (PC) consultation has been proposed for patients with resectable gastrointestinal cancer. Two randomized trials are evaluating PC and surgeon comanagement in the perioperative setting. We hypothesized that pancreatic surgeons harbor significant reservations regarding providing palliative care in parallel with potentially curative surgery. METHODS: An anonymous international web-based survey was conducted in 2021. Chi-square test or Fisher’s exact test were used for categorical questions, and the Wilcoxon test was used for Likert-scaled questions. Statistical significance was set at p < 0.05. RESULTS: A total of 138 surveys were completed. Of these, 83% of surgeons were male, 85% completed a fellowship, 80% practiced in academia, 46% performed more than 30 annual curative-intent operations for PDAC, and 90% had been in practice 30 or fewer years. Of those surveyed, 88% of surgeons were from the US. Of those surveyed, 65% of surgeons supported introducing PC preoperatively; female surgeons (p = 0.018) and fellowship-trained surgeons (p = 0.002) significantly more likely supported this practice; however, surgeons in practice more than 30 years did not support preoperative PC referral (p = 0.003). Of those surveyed, 94% of surgeons identified benefits associated with preoperative PC consultation; female surgeons (p = 0.048; odds ratio 3.03; CI 097. to 9.45) and fellowship-trained surgeons (p = 0.016; odds ratio 4.17; CI 1.30 to 13.33), were more likely to report that preoperative PC consultation may improve symptoms management. US surgeons identified more benefits and challenges related to preoperative PC consultation compared with non-US surgeons. CONCLUSION: Most surgeons recognize the potential benefit of preoperative PC consultation and comanagement. However, gender, fellowship training, and years in practice impact surgeons’ preference. Further studies are needed to elucidate patient and other stakeholder perspectives on preoperative PC-surgeon comanagement.

Central diabetes insipidus from a patient's perspective: management, psychological co-morbidities, and renaming of the condition: results from an international web-based survey

Central diabetes insipidus is a rare neuroendocrine condition. Data on treatment-associated side-effects, psychological comorbidities, and incorrect management are scarce. The aim of this study was to investigate patients' perspectives on their disease. This study used a cross-sectional, web-based, anonymous survey, developed by endocrinologists and patient representatives, to collect the opinions of patients with central diabetes insipidus on management and complications of their disease, psychological comorbidities, degree of knowledge and awareness of the condition among health-care professionals, and renaming the disease to avoid confusion with diabetes mellitus (diabetes). Between Aug 23, 2021, and Feb 7, 2022, 1034 patients with central diabetes insipidus participated in the survey. 91 (9%) participants were children and adolescents (37 [41%] girls and 54 [59%] boys; median age 10 years [IQR 6-15]) and 943 (91%) were adults (757 [80%] women and 186 [20%] men]; median age 44 years [34-54]). 488 (47%) participants had isolated posterior pituitary dysfunction and 546 (53%) had combined anterior and posterior pituitary dysfunction. Main aetiologies were idiopathic (315 [30%] of 1034 participants) and tumours and cysts (pre-surgical 217 [21%]; post-surgical 254 [25%]). 260 (26%; 95% CI [0·23-0·29]) of 994 patients on desmopressin therapy had hyponatraemia leading to hospitalisation. Patients who routinely omitted or delayed desmopressin to allow intermittent aquaresis had a significantly lower prevalence of hyponatraemia compared with those not aware of this approach (odds ratio 0·55 [95% CI 0·39-0·77]; p=0·0006). Of patients who had to be hospitalised for any medical reason, 71 (13%; 95% CI 0·10-0·16) of 535 patients did not receive desmopressin while in a fasting state (nil by mouth) without intravenous fluid replacement and reported symptoms of dehydration. 660 (64%; 0·61-0·67) participants reported lower quality of life, and 369 (36%; 0·33-0·39) had psychological changes subjectively associated with their central diabetes insipidus. 823 (80%; 0·77-0·82) participants encountered a situation where central diabetes insipidus was confused with diabetes mellitus (diabetes) by health-care professionals. 884 (85%; 0·83-0·88) participants supported renaming the disease; the most favoured alternative names were vasopressin deficiency and arginine vasopressin deficiency. This is the largest survey of patients with central diabetes insipidus, reporting a high prevalence of treatment-associated side-effects, mismanagement during hospitalisation, psychological comorbidities, and a clear support for renaming the disease. Our data are the first to indicate the value of routinely omitting or delaying desmopressin. Swiss National Science Foundation, Swiss Academy of Medical Sciences, and G&J Bangerter-Rhyner-Foundation.

What is the adult experience of Perthes' disease? : initial findings from an international web-based survey.

AimsPerthes’ disease is an uncommon hip disorder with limited data on the long-term outcomes in adulthood. We partnered with community-based foundations and utilized web-based survey methodology to develop the Adult Perthes Survey, which includes demographics, childhood and adult Perthes’ disease history, the University of California Los Angeles (UCLA) Activity Scale item, Short Form-36, the Hip disability and Osteoarthritis Outcome Score, and a body pain diagram. Here we investigate the following questions: 1) what is the feasibility of obtaining > 1,000 survey responses from adults who had Perthes’ disease using a web-based platform?; and 2) what are the baseline characteristics and demographic composition of our sample?MethodsThe survey link was available publicly for 15 months and advertised among support groups. Of 1,505 participants who attempted the Adult Perthes survey, 1,182 completed it with a median timeframe of 11 minutes (IQR 8.633 to 14.72). Participants who dropped out were similar to those who completed the survey on several fixed variables. Participants represented 45 countries including the USA (n = 570; 48%), UK (n = 295; 25%), Australia (n = 133; 11%), and Canada (n = 46; 4%). Of the 1,182 respondents, 58% were female and the mean age was 39 years (SD 12.6).ResultsAges at onset of Perthes’ disease were < six years (n = 512; 43%), six to seven years (n = 321; 27%), eight to 11 years (n = 261; 22%), and > 11 years (n = 76; 6%), similar to the known age distribution of Perthes’ disease. During childhood, 40% (n = 476) of respondents had at least one surgery. Bracing, weightbearing restriction, and absence of any treatment varied significantly between USA and non-USA respondents (p < 0.001, p = 0.002, and p < 0.001, respectively). As adults, 22% (n = 261) had at least one total hip arthroplasty, and 30% (n = 347) had any type of surgery; both more commonly reported among women (p = 0.002).ConclusionWhile there are limitations due to self-sampling, our study shows the feasibility of obtaining a large set of patient-reported data from adults who had childhood Perthes’ from multiple countries.Cite this article: Bone Jt Open 2022;3(5):404–414.