Core Outcome Set for IgE-mediated food allergy clinical trials and observational studies of interventions: International Delphi consensus study 'COMFA'.

BACKGROUND: IgE-mediated food allergy (FA) is a global health concern with substantial individual and societal implications. While diverse intervention strategies have been researched, inconsistencies in reported outcomes limit evaluations of FA treatments. To streamline evaluations and promote consistent reporting, the Core Outcome Measures for Food Allergy (COMFA) initiative aimed to establish a Core Outcome Set (COS) for FA clinical trials and observational studies of interventions. METHODS: The project involved a review of published clinical trials, trial protocols and qualitative literature. Outcomes found as a result of review were categorized and classified, informing a two-round online-modified Delphi process followed by hybrid consensus meeting to finalize the COS. RESULTS: The literature review, taxonomy mapping and iterative discussions with diverse COMFA group yielded an initial list of 39 outcomes. The iterative online and in-person meetings reduced the list to 13 outcomes for voting in the formal Delphi process. One more outcome was added based on participant suggestions after the first Delphi round. A total of 778 participants from 52 countries participated, with 442 participating in both Delphi rounds. No outcome met a priori criteria for inclusion, and one was excluded as a result of the Delphi. Thirteen outcomes were brought to the hybrid consensus meeting as a result of Delphi and two outcomes, 'allergic symptoms' and 'quality of life' achieved consensus for inclusion as 'core' outcomes. CONCLUSION: In addition to the mandatory reporting of adverse events for FA clinical trials or observational studies of interventions, allergic symptoms and quality of life should be measured as core outcomes. Future work by COMFA will define how best to measure these core outcomes.

Frequency of atopic dermatitis and psoriasis in the elderly - Cross-sectional findings from the German AugUR study.

Introduction Atopic Dermatitis (AD) and psoriasis appear to affect 2-3% (lifetime prevalence) people worldwide. However, there is little epidemiological data on the prevalence of those two chronic inflammatory skin diseases in the elderly. The aim of this study was to provide frequency estimates of AD and psoriasis obtained from an elderly population in Germany. Methods We examined baseline data from the AugUR study, a cohort study focusing on an aging population within the vicinity of Regensburg, Germany (comprising 1,133 participants with a median age of 76.7 years, 45% being female). We estimated raw frequencies of physician-diagnosed AD and psoriasis from participants' self-reports in personal interviews. These frequencies were adjusted to reflect the demographic distribution of the Bavarian population, considering both gender and age groupings spanning five or ten years. Results Data from 1,133 participants aged 70-95 (45.1% women) were available for analysis. Physician-diagnosed AD was reported by 3.3 % of participants (2.4% from men, 4.3% from women) and 5.6% (95%-CI: 4.3-7.1%) reported physician-diagnosed psoriasis (6.6% in men, 4.3% in women). Age- and gender-standardized frequency estimates for AD were 3.4% (95%-CI: 2.4-4.6, 2.6% in men, 4.3% in women) and 5.3% for psoriasis (95%-CI: 4.1-6.8, 6.3% in men and 4.1% in women). Conclusion This study indicates a lower than previously reported lifetime-prevalence of AD (3.4% vs. 8-10%) and a higher one regarding psoriasis (5.3% vs. 2-4%) in highly aged individuals. More epidemiological research in elderly populations using validated physician diagnoses are desirable.

Allergic diseases as risk factors for Long-COVID symptoms: Systematic review of prospective cohort studies.

OBJECTIVE: The role of allergy as a risk factor for Long-COVID (LC) is unclear and has not been thoroughly examined yet. We aimed to systematically review and appraise the epidemiological evidence on allergic diseases as risk factors for LC. DESIGN: This is an initial systematic review. Two reviewers independently performed the study selection and data extraction using Covidence. Risk of bias (RoB) and certainty of evidence (GRADE) were assessed. Random effects meta-analyses were used to pool unadjusted ORs within homogeneous data subsets. DATA SOURCES: We retrieved articles published between January 1st, 2020 and January 19th, 2023 from MEDLINE via PubMed, Scopus, the WHO-COVID-19 database and the LOVE platform (Epistemonikos Foundation). In addition, citations and reference lists were searched. ELIGIBILITY CRITERIA: We included prospective cohort studies recruiting individuals of all ages with confirmed SARS-CoV-2 infection that were followed up for at least 12 months for LC symptoms where information on pre-existing allergic diseases was available. We excluded all study designs that were not prospective cohort studies and all publication types that were not original articles. RESULTS: We identified 13 studies (9967 participants, range 39-1950 per study), all assessed as high RoB, due to population selection and methods used to ascertain the exposures and the outcome. Four studies did not provide sufficient data to calculate Odds Ratios. The evidence supported a possible relationship between LC and allergy, but was very uncertain. For example, pre-existing asthma measured in hospital-based populations (6 studies, 4019 participants) may be associated with increased risk of LC (Odds Ratio 1.94, 95% CI 1.08, 3.50) and findings were similar for pre-existing rhinitis (3 studies, 1141 participants; Odds Ratio 1.96, 95% CI 1.61, 2.39), both very low certainty evidence. CONCLUSIONS: Pre-existing asthma or rhinitis may increase the risk of LC.

Sunburn and sun protection during recreational outdoor sport in summer: Findings from the German general population aged 16-65 years.

BACKGROUND: Sunburn can increase one's risk of developing skin cancer. We aimed to quantify the prevalence of sunburn during recreational outdoor sport (ROS) in summer, to explore the use of different sun protection measures, and to examine factors associated with sunburn during ROS using a population-based sample from Germany. METHODS: For this cross-sectional study, 2081 individuals aged 16-65 years who reported being engaged in ROS in summer were surveyed via standardized telephone interviews in 2020 (National Cancer Aid Monitoring, NCAM). RESULTS: Overall, 16.7% reported experiencing at least one sunburn during ROS in the past twelve months. Sunburn occurrence was negatively associated with the age of the participants (e.g. OR = 0.49 in 56-65 year-olds, p < .001), and positively associated with skin type I/II (OR = 1.55, p < .001) and with having a higher number of nevi (OR = 1.42, p = .005). While wearing sleeved shirts was the most frequently-used sun protection measure during ROS (74.9%), wearing headgear was least common in our sample (29.0%). In multivariate analyses, sunburn was positively associated with the use of sun protection measures (e.g. OR = 1.32 for wearing sleeved shirts, p = .02). CONCLUSIONS: Our nationwide data show that ROS is one of the settings where sun protection should play a greater role. Especially in organized sports, particular attention should be devoted to organizational (e.g. exercise outside peak hours) or contextual measures (e.g. shade by the natural or built environment) to prevent skin cancer in later life.

Piloting an ICU follow-up clinic to improve health-related quality of life in ICU survivors after a prolonged intensive care stay (PINA): feasibility of a pragmatic randomised controlled trial.

BACKGROUND: ICU survivors often suffer from prolonged physical and mental impairments resulting in the so called "Post-Intensive Care Syndrome" (PICS). The aftercare of former ICU patients affected by PICS in particular has not been addressed sufficiently in Germany so far. The aim of this study was to evaluate the feasibility of a pragmatic randomised trial (RCT) comparing an intensive care unit (ICU) follow-up clinic intervention to usual care. METHODS: This pilot study in a German university hospital evaluated the feasibility of a pragmatic RCT. Patients were assigned in a 1:1 ratio to an ICU follow-up clinic intervention or to usual care. The concept of this follow-up clinic was previously developed in a participatory process with patients, next of kin, health care professionals and researchers. We performed a process evaluation and determined acceptability, fidelity, completeness of measurement instruments and practicality as feasibility outcomes. The RCT's primary outcome (health-related quality of life) was assessed six months after ICU discharge by means of the physical component scale of the Short-Form-12 self-report questionnaire. RESULTS: The pilot study was conducted from June 2020 to May 2021 with 21 and 20 participants in the intervention and control group. Principal findings related to feasibility were 85% consent rate (N = 48), 62% fidelity rate, 34% attrition rate (N = 41) and 77% completeness of outcome measurements. The primary effectiveness outcome (health-related quality of life) could be measured in 93% of participants who completed the study (N = 27). The majority of participants (85%) needed assistance with follow-up questionnaires (practicality). Median length of ICU stay was 13 days and 85% (N = 41) received mechanical ventilation, median Sequential Organ Failure Assessment Score was nine. Six-month follow-up assessment was planned for all study participants and performed for 66% (N = 41) of the participants after 197 days (median). CONCLUSION: The participatory developed intervention of an ICU follow-up clinic and the pragmatic pilot RCT both seem to be feasible. We recommend to start a pragmatic RCT on the effectiveness of the ICU follow-up clinic. TRIAL REGISTRATION: ClinicalTrials.gov US NLM, NCT04186468, Submission: 02/12/2019, Registration: 04/12/2019, https://clinicaltrials.gov/ct2/show/NCT04186468.

Frequency of hand eczema in the elderly: Cross-sectional findings from the German AugUR study.

BACKGROUND: Hand eczema (HE) is a chronic inflammatory skin disease caused by a genetic predisposition and environmental exposures. There is a lack of population-based studies on skin diseases in the elderly. OBJECTIVES: Our aim was to estimate the frequency of HE in the elderly to determine its burden of disease in this particular population. METHODS: We analyzed data from the research platform AugUR, a study on chronic diseases in the elderly (n = 1133, ages 70-95 years, mean age 77.6, 45.1% women). Raw frequencies were estimated using self-reports on physician-diagnosed HE from a standardized personal interview. Frequencies were standardized to the Bavarian population weighted by gender and 5-year age-groups. RESULTS: In our sample 2.7% (95% confidence interval [CI] 1.6-4.3) of the paticipants reported to ever have been diagnosed with HE. Among those 57% were male. After standardization, the frequency was estimated at 2.8% (95% CI 1.9-3.9). There were no differences between male and female participants. CONCLUSIONS: Compared to other studies on lifetime frequency of HE, our estimates seem to be remarkably lower. More in-depth studies with validated diagnoses are warranted to precisely estimate the burden of HE in the elderly.

Predictors of non-transplantation of adult donor organs--an observational study using routine data from Eurotransplant.

BACKGROUND: The majority of pancreases, offered in allocation, are not transplanted. This pancreas under-utilisation is a phenomenon observed in all transplant systems in North-America and Europe. It was the aim of this study to analyse factors predictive of pancreas non-transplantation in Germany. METHODS: Routine Eurotransplant data of 3,666 deceased German donors (from 2002-2011) were used for multivariate modelling. Socio-demographic and medical factors were considered as independent variables in logistic regression models with non-transplantation as dependent variable. RESULTS: Male gender, advanced age, overweight/obesity, long ICU stay, a history of smoking, non-traumatic brain death, elevated levels of sodium, serum glucose, lipase/amylase and the liver not being considered for procurement were significant independent predictors of non-transplantation. CONCLUSION: In line with previous research, advanced age, high BMI, long ICU stay and the liver not being considered for procurement were the strongest predictors of pancreas non-transplantation in Germany. About three quarters of the variance remained unexplained, suggesting that factors not assessed or unknown may play a decisive role.

[Follow-up outpatient clinics for patients with post COVID: a survey to assess and characterize aspects of care]. / Nachsorgeambulanzen für Patient*innen mit Post-COVID: eine Befragung zur Bestandsaufnahme und Charakterisierung von Versorgungsaspekten.

After acute infection with the SARS-CoV-2 virus, up to 10 % of affected individuals suffer from long-term health impairments, also referred to as "Post-COVID". In Germany, specialized outpatient clinics have been established to care for patients with Post-COVID. A structured survey of the care situation is not yet available, but essential for a demand-oriented care. The present study aimed to systematically assess and describe structural and process-related aspects of care, and to perform an inventory and needs analysis of Post-COVID outpatient clinics in Germany.An online survey was developed assessing the structure and organization of the outpatient clinics, service offerings and networking of care from the perspective of the outpatient clinic directors. A total of 95 outpatient clinics were identified, and an invitation to participate in the online survey was sent via e-mail to the directors of the outpatient clinics. Data were collected between February and May 2022. Descriptive data analysis was performed.A total of 28 outpatient clinic managers (29 %) took part in the survey. Participants were between 32 and 66 years old, and 61 % (n = 17) were male. The outpatient clinics were most frequently affiliated with the specialties of pneumology (n = 10; 36 %), internal medicine, psychiatric and psychosomatic medicine, and neurology (n = 8; 29 %, respectively). Among the outpatient clinic directors, 64 % (n = 18) stated that the time spent waiting for an appointment was more than one month. Utilization (n = 25; 89 %), appointment demand (n = 26; 93 %), and the need for more Post-COVID outpatient clinics (n = 20; 71 %) were rated as high by the outpatient clinic directors. Nearly all directors reported networking with in-clinic facilities (n = 27; 96 %), with primary care physicians and with specialists in private practice (n = 21; 75 %, respectively).The main focus of care is pneumology. Internal medicine, psychiatry/psychosomatics and neurology are also equally represented. Our data further suggest a high demand for Post-COVID outpatient clinics and the need to expand this care offer.

Cross-sectional study on exercise-related skin complaints among sports students at two German universities.

Sports activities can lead to exercise-related skin complaints. These include different symptoms (e.g. infections, mechanical injuries, contact dermatitis). Previous studies mostly focused only on skin infections and injuries in competitive athletes. The purpose of this study was to determine the frequency and characteristics of exercise-related skin complaints among sports students and to what extent these complaints influence physical fitness. We performed a self-administered online survey among 259 actively exercising sports students from two German universities. Descriptive analyses were conducted. The most common complaints were blistering (57.3%), dryness (56.7%), redness (44.7%), and chafing (34.0%). Hands and feet (78.0% each) were most frequently affected. Participants whose skin was particularly stressed (47.5%) had higher training duration (7.6 h/week, 95%-CI 6.8-8.3 h) than those without complaints (5.1 h/week, 95%-CI 5.5-6.7 h, p = 0.003). The students reported reduced intensity (34.7%) and frequency (22.7%) of training due to their skin complaints. A reduction in performance was reported by 32.0% of the students. Actively exercising sports students considered an intact skin as essential for their physical fitness. Reported impairments of the skin led to a reduced intensity and frequency of training. To enhance the awareness of exercise-related skin complaints, further research is necessary.

COVID-19 crisis management of German ICU clinicians in leadership - a metaphor analysis.

The COVID-19 pandemic coincided with an already long-standing crisis in health systems around the world characterized by economic pressure and increasing staff shortage. "Crisis" became a global metaphor to convey collective experiences of the COVID-19 threat. Little is known on how crisis metaphors influence thought and speech on crisis management and the challenging staff situation of intensive care unit (ICU) clinicians in leadership positions and how they act. Therefore, we were interested in (1) which metaphorical concepts ICU clinicians in leadership use to express experiences and strategies in dealing with coinciding crises, (2) how these change over time, and (3) how metaphors in speech reveal self-images of crisis management. We conducted a systematic metaphor analysis focusing on data from three participants of a qualitative interview study with twenty-four healthcare professionals in ICUs in Germany. The participants were interviewed at two time points between April 2020 and March 2021. We identified and reconstructed metaphorical concepts of three interviewees (ICU clinicians in leadership) with regard to the pandemic management, and developed a typology based on the dimensions of mood, modus operandi, location, and scope. The typology consists of eight self-images (protagonists) for the crisis management of ICU clinicians in leadership, such as the figure of the soldier ("to unite everyone behind this flag"), the distributor ("sometimes it is a crazy patchwork [wahnsinniges Gestückel]") or the critic ("we are the fool for everything"). They embody different qualities of a leader and refer to intra- and inter-role conflicts within multiple crisis conditions. Metaphor analysis reveals different self-images of ICU leadership clinicians in relation to crisis management. This illustrates that thinking and perceptions of crisis management may strongly differ between and within leaders and may change over the course of crises. Our findings highlight the need both to improve knowledge on challenges associated with leadership in crises and preparedness, and to support clinicians in their leadership by recognizing and addressing differences and changes in leaders' self-image.

Improvements and advances in core outcome set methodology: proceedings of the CS-COUSIN & COMFA Joint Meeting.

A COS is a systematically developed list of outcomes recommended for reporting all studies within a particular disease area. The Cochrane Skin-Core Outcome Set Initiative (CS-COUSIN) and the Core Outcome Measures in Food Allergy (COMFA) Initiative Joint Meeting was held virtually on September 23 through 28, 2021. This meeting brought together core outcome set (COS) developers within the domains of dermatology and food allergy, respectively. The meeting assessed the state of COS methodology, provided a forward look, and facilitated the networking of members of individual COS groups. The meeting hosted several expert-led key addresses and focus sessions, in which work was critically discussed, new developments were shared, and groundwork was laid for future projects. The conference emphasized the importance of ongoing COS work to improve patient outcomes and limit research waste.

German Cardiac Arrest Registry: rationale and design of G-CAR.

BACKGROUND: In Germany, 70,000-100,000 persons per year suffer from out-of-hospital cardiac arrest (OHCA). Despite medical progress, survival rates with good neurological outcome remain low. For many important clinical issues, no or only insufficient evidence from randomised trials is available. Therefore, a systemic and standardised acquisition of the treatment course and of the outcome of OHCA patients is warranted. STUDY DESIGN: The German Cardiac Arrest Registry (G-CAR) is an observational, prospective, multicentre registry. It will determine the characteristics, initial treatment strategies, invasive procedures, revascularisation therapies and the use of mechanical circulatory support devices with a focus on extracorporeal cardiopulmonary resuscitation. A special feature is the prospective 12-month follow-up evaluating mortality, neurological outcomes and several patient-reported outcomes in the psychosocial domain (health-related quality of life, cognitive impairment, depression/anxiety, post-traumatic stress disorder and social reintegration). In a pilot phase of 24 months, 15 centres will include approximately 400 consecutive OHCA patients ≥ 18 years. Parallel to and after the pilot phase, scaling up of G-CAR to a national level is envisaged. CONCLUSION: G-CAR is the first national registry including a long-term follow-up for adult OHCA patients. Primary aim is a better understanding of the determinants of acute and long-term outcomes with the perspective of an optimised treatment. TRIAL REGISTRY: NCT05142124. German Cardiac Arrest Registry (G-CAR).

[Joint interpretation work in qualitative health research in times of "physical distancing"]. / Gemeinsame Interpretationsarbeit in der qualitativen Gesundheitsforschung in Zeiten von "Physical Distancing".

In the context of the COVID-19 pandemic, researchers face particular challenges: as contact restrictions prevented face-to-face formats, both data collection and qualitative interpretation work (data analysis) had to be carried out in virtual space. In this article, we outline a digital option for strategically conducting joint interpretation work in qualitative health research in times of "physical distancing", which also provides inspiration for research practice in the post-pandemic future.

Health Literacy in Health Professionals Two Years into the COVID-19 Pandemic: Results From a Scoping Review.

BACKGROUND: Health literacy (HL) is an important public health goal but also crucial in individuals providing medical care. During the pandemic, COVID-19-related HL of health professionals (HPs) has gained momentum; it helps to minimize the risk of self-infection, on the one hand, and to protect patients and relatives from infection, on the other. However, comprehensive information about the levels of individual pandemic-related HL in HPs is scarce. OBJECTIVE: In this paper, we aimed at describing the extent of existing research on HL (concept) conducted in HPs (population) in the COVID-19 pandemic (context). The review intends to map the literature on HL in HPs, thereby highlighting research gaps. METHODS: This scoping review was conducted using the methodology of Khalil et al (2016). This involved an electronic search of PubMed (MEDLINE) and PsycInfo and a hand search. The included studies were iteratively examined to find items representing the four HL dimensions of access, understand, critically appraise, and apply COVID-19-related health information. RESULTS: The search yielded a total of 3875 references. Only 7 (1.4%) of the 489 included studies explicitly stated to have addressed HL; 2 (0.4%) studies attempted to develop an instrument measuring COVID-19-related HL in HPs; 6 (1.2%) studies included an HL measure in an observational survey design. Of the remainder, the vast majority used a cross-sectional design. The dimensions access and understand were frequently examined, but few studies looked at the dimensions critical appraisal or apply. Very few studies reported an intervention aiming to improve a COVID-19-related HL outcome. CONCLUSIONS: High levels of COVID-19-related HL among HPs are necessary to ensure not only safe practice with necessary protection of HPs, their patients, and relatives, but also successful care delivery and subsequently improved health outcomes in the long term. To advance our understanding of how high COVID-19-related HL manifests itself in HPs, how it relates to health outcomes, and how it can be improved, more research is necessary. TRIAL REGISTRATION: Open Science Framework dbfa5; https://osf.io/dbfa5/.

Intensive Care Units Healthcare Professionals' Experiences and Negotiations at the Beginning of the COVID-19 Pandemic in Germany: A Grounded Theory Study.

Faced with the pandemic of the novel coronavirus (SARS-CoV-2), healthcare professionals (HCPs) in intensive care units (ICU) adjusted their organizational, operational, and personal procedures to ensure care for COVID-19 patients. We used grounded theory approach to explore ICU HCPs' perspectives on professional action at the beginning of the COVID-19 pandemic in Germany from March to July 2020. The study aimed to examine implicit principles on negotiating social practice and interaction of ICU HCPs in an exceptional situation, which was characterized by a high level of changes. We conducted theme-guided qualitative telephone/virtual interviews with 39 ICU HCPs from ten German federal states. The data collection followed the principles of theoretical sampling. We adpoted grounded theory approach proposed by Charmaz and discussed using Lüscher's theoretical concept of ambivalence. The analysis revealed five interconnected categories about the ICU HCPs' negotiation of social practice and interaction at the beginning of the COVID-19 pandemic in Germany. In this context, a complex field of ambivalence (key category) emerged between habits and routines of a pre-pandemic normality. Pragmatic restructuring processes were initiated, which quickly resulted in a new normality of a "daily routine of preparation". Dealing with ambivalence offers the potential for change.

[White Paper - Improving the care of patients with impairments following sepsis and infections]. / White Paper ­ Verbesserung der Versorgungs- und Behandlungsangebote für Menschen mit Sepsis- und Infektionsfolgen.

Hundreds of thousands of individuals who experience lasting sequelae after sepsis and infections in Germany do not receive optimal care. In this White Paper we present measures for improvement, which were developed by a multidisciplinary expect panel as part of the SEPFROK project. Improved care rests on four pillars: 1. cross-sectoral assessment of sequelae and a structured discharge and transition management, 2. interdisciplinary rehabilitation and aftercare with structural support, 3. strengthening the specific health literacy of patients and families, and 4. increased research into causes, prevention and treatment of sequelae. To achieve this, appropriate cross-sectoral care structures and legal frameworks must be created.

Experiences, opinions and expectations of health care providers towards an intensive care unit follow-up clinic: Qualitative study and online survey.

OBJECTIVES: Independent of the underlying disease, intensive care unit survivors often suffer from cognitive, physical and mental impairments, also known as post-intensive care syndrome (PICS). Specific follow-up services are recommended for these patients. This study aims to capture the perspectives of health care providers on the development of the first intensive care unit follow-up-clinic in Germany. RESEARCH METHODOLOGY: A qualitative study with six focus groups (n = 41) and six expert interviews, followed by a quantitative survey was conducted, involving nine different professions. Qualitative and quantitative data were analysed using thematic analysis and descriptive statistics, respectively. FINDINGS: Participants described aftercare of former intensive care unit patients as complex and appreciated the idea of an intensive care unit follow-up clinic to improve continuity of care and multidisciplinary collaboration. The favoured model combined diagnostics and targeted referral of patients to specialists and therapists with the provision of information. In the survey, participants disagreed on how to implement this referral system but agreed that assessments should be multidimensional. CONCLUSION: The necessity of and important criteria for the design of an intensive care unit follow-up clinic were identified. We will integrate these data with further evidence to develop a concept for a complex intervention.

Patients' perception on the quality of care for multiple endocrine neoplasia disorders in Europe: an online survey from a patient support group.

PURPOSE: European Patient Advocacy Groups (ePAGs) within the Endo-ERN identified a lack of knowledge about quality of care (QoC) of patients with multiple endocrine neoplasia (MEN). The aim of this study was to identify inequalities in care and to encourage improvements. METHODS: The European MEN Alliance (EMENA) developed and conducted a survey, using the European Commissions' EUSurvey platform. Patient groups and healthcare professionals (HCPs) distributed the survey. RESULTS: A total of 288 participants completed the survey (MEN1 n = 203, MEN2 n = 67, MEN3 n = 18) from 18 European countries. The majority of respondents were recruited via patient groups (58%), aged between 41 and 60 years (53%) and were female (67%). All participants reported having been diagnosed on average 5.58 years (95%-CI: 4.45-6.60) after first symptoms occurred. This timeframe was lower in the group with MEN2 (2.97 years, 95%-CI: 1.37-4.57). Most of the participants (67%) received their diagnosis by a positive gene test after presenting with one or more MEN-related tumours. Overall QoC was rated as either "good" (43%) or "excellent" (36%). CONCLUSION: The results of this unique Europe-wide, patient-driven survey on QoC of patients with MEN show that ratings for overall QoC were lower than ratings for different aspects of care. This may be because of the complex nature of care for genetic syndromes. Furthermore, patients who connect with patient groups may be deemed "expert patients" whose answers are not representative of the overall MEN patient community. We hope that Endo-ERN can support further education and training for HCPs based on these results.