Health Care Professionals' and Parents' Perspectives on the Use of AI for Pain Monitoring in the Neonatal Intensive Care Unit: Multisite Qualitative Study.

BACKGROUND: The use of artificial intelligence (AI) for pain assessment has the potential to address historical challenges in infant pain assessment. There is a dearth of information on the perceived benefits and barriers to the implementation of AI for neonatal pain monitoring in the neonatal intensive care unit (NICU) from the perspective of health care professionals (HCPs) and parents. This qualitative analysis provides novel data obtained from 2 large tertiary care hospitals in Canada and the United Kingdom. OBJECTIVE: The aim of the study is to explore the perspectives of HCPs and parents regarding the use of AI for pain assessment in the NICU. METHODS: In total, 20 HCPs and 20 parents of preterm infants were recruited and consented to participate from February 2020 to October 2022 in interviews asking about AI use for pain assessment in the NICU, potential benefits of the technology, and potential barriers to use. RESULTS: The 40 participants included 20 HCPs (17 women and 3 men) with an average of 19.4 (SD 10.69) years of experience in the NICU and 20 parents (mean age 34.4, SD 5.42 years) of preterm infants who were on average 43 (SD 30.34) days old. Six themes from the perspective of HCPs were identified: regular use of technology in the NICU, concerns with regard to AI integration, the potential to improve patient care, requirements for implementation, AI as a tool for pain assessment, and ethical considerations. Seven parent themes included the potential for improved care, increased parental distress, support for parents regarding AI, the impact on parent engagement, the importance of human care, requirements for integration, and the desire for choice in its use. A consistent theme was the importance of AI as a tool to inform clinical decision-making and not replace it. CONCLUSIONS: HCPs and parents expressed generally positive sentiments about the potential use of AI for pain assessment in the NICU, with HCPs highlighting important ethical considerations. This study identifies critical methodological and ethical perspectives from key stakeholders that should be noted by any team considering the creation and implementation of AI for pain monitoring in the NICU.

A conceptual framework for a neurophysiological basis of art therapy for PTSD.

Post-traumatic stress disorder (PTSD) is a heterogeneous condition that affects many civilians and military service members. Lack of engagement, high dropout rate, and variable response to psychotherapy necessitates more compelling and accessible treatment options that are based on sound neuroscientific evidence-informed decision-making. Art therapy incorporates elements proven to be effective in psychotherapy, such as exposure, making it a potentially valuable treatment option. This conceptual paper aims to inform the neurophysiological rationale for the use of art therapy as a therapeutic approach for individuals with PTSD. A narrative synthesis was conducted using literature review of empirical research on the neurophysiological effects of art therapy, with supporting literature on neuroaesthetics and psychotherapies to identify art therapy factors most pertinent for PTSD. Findings were synthesized through a proposed framework based on the triple network model considering the network-based dysfunctions due to PTSD. Art therapy's active components, such as concretization and metaphor, active art engagement, emotion processing and regulation, perspective taking and reframing, and therapeutic alliance, may improve symptoms of PTSD and prompt adaptive brain functioning. Given the scarcity of rigorous studies on art therapy's effectiveness and mechanisms of alleviating PTSD symptoms, the suggested framework offers a neurophysiological rationale and a future research agenda to investigate the impact of art therapy as a therapeutic approach for individuals with PTSD.

Mega-Barcoding Projects: Delivering National DNA Barcoding Initiatives for Plants.

Plant DNA barcoding has a multitude of applications ranging from species detection and biomonitoring to investigating ecological networks and checking food quality. The ability to accurately identify species, using DNA barcoding, depends on the quality and comprehensiveness of the reference library that is used. This chapter describes how to create plant reference libraries using the rbcL, matK, and ITS2 DNA barcode regions. It covers the creation of species lists, the collection of specimens from the field and herbarium, DNA extraction, PCR amplification, and DNA sequencing. This methodology gives special attention to using samples from herbaria, as they represent important collections of easily accessible, taxonomically verified plant material.

Prevalence and risk of sexual violence victimization among mental health service users: a systematic review and meta-analyses.

PURPOSE: People with mental disorders are more likely to experience sexual violence than the general population, but little is known about the prevalence of sexual violence in people who use psychiatric services. This paper aims to estimate the prevalence and odds of sexual violence victimisation within mental health services by gender and mental health setting (i.e. inpatient, outpatient and mixed settings). METHODS: This study is a systematic review and meta-analysis (PROSPERO registration number: CRD4201810019). Three databases (Medline, Embase, PsychINFO) were searched and citation tracking, and reference screening of included studies was conducted. Studies were included if the prevalence and/or risk of sexual violence in psychiatric service users were reported or calculable across the past year or adult lifetime. The methodological quality of included studies was assessed. A random effects meta-analyses was conducted to estimate odds ratios and pooled prevalence estimates of sexual violence in different mental health settings. RESULTS: Twenty-six studies were included encompassing 197,194 participants. The meta-analyses revealed high pooled prevalence estimates and increased odds of sexual violence victimisation in male and female psychiatric service users compared to non-psychiatric service users. CONCLUSIONS: Mental health practitioners should be trained to respond effectively to disclosures of sexual violence, particularly from these vulnerable groups. Future sexual violence interventions should consider mental health as a treatment outcome.

Fluidity of Equipoise in a Multi-Centred Pilot RCT: Influences on Clinician Decision-Making in Offering Trial Entry.

OBJECTIVES: The embedded Qualitative Process Evaluation (QPE) within the CSTICH- Pilot RCT explored facilitators and barriers to recruitment within the Pilot. This study reports a secondary analysis of the overarching theme of Fluidity of Equipoise and the influences on individual and community clinical equipoise around the use of Emergency Cervical Cerclage (ECC). STUDY DESIGN: RCT recruitment assumes clinical equipoise and is defined as genuine uncertainty about an intervention. The ability of trial recruiters to convey this equipoise is also key to participant recruitment and fully informed consent. This exploratory qualitative process evaluation used semi-structured interviews with healthcare professionals (HCPs) involved in trial recruitment. Interviews were audio-recorded, transcribed, and analysed using codebook thematic analysis. RESULTS: 23 HCPs were interviewed. Clinical equipoise around the use of ECC was variable and influenced by a multitude of factors including: (1) obstetric history; (2) gestation; (3) standard site practice, and (4) HCPs previous experiences of ECC. We have interpreted this variability as 'fluidity of equipoise'. CONCLUSIONS: Clinical equipoise around complex pregnancy related conditions was fluid and influenced by the complexities of obstetric histories and gestation at presentation. Equipoise of HCPs involved in trial recruitment should be considered carefully as it can impact the nuances of recruitment, particularly in more challenging trials such as CSTICH-2. Study-specific documents and training can be used to increase staff and patient awareness of uncertainty in the evidence base for interventions under investigation. Further research is needed around the potential consequences of equipoise fluidity.

The hidden curriculum across medical disciplines: an examination of scope, impact, and context.

Background: While research suggests that manifestations of the hidden curriculum (HC) phenomenon have the potential to reinforce or undermine the values of an institution, very few studies have comprehensively measured its scope, impact, and the varied clinical teaching and learning contexts within which they occur. We explored the HC and examined the validity of newly developed constructs and determined the influence of context on the HC. Methods: We surveyed medical students (n =182), residents (n =148), and faculty (n = 140) from all disciplines at our institution between 2019 and 2020. Based on prior research and expertise, we measured participants' experience with the HC including perceptions of respect and disrespect for different medical disciplines, settings in which the HC is experienced, impact of the HC, personal actions, efficacy, and their institutional perceptions. We examined the factor structure, reliability, and validity of the HC constructs using exploratory factor analysis Cronbach's alpha, regression analysis and Pearson's correlations. Results: Expert judges (physician faculty and medical learners) confirmed the content validity of the items used and the analysis revealed new HC constructs reflecting negative expressions, positive impacts and expressions, negative impacts, personal actions, and positive institutional perceptions of the HC. Evidence for criterion validity was found for the negative impacts and the personal actions constructs and were significantly associated with the stage of respondents' career and gender. Support for convergent validity was obtained for HC constructs that were significantly correlated with certain contexts within which the HC occurs. Conclusion: More unique dimensions and contexts of the HC exist than have been previously documented. The findings demonstrate that specific clinical contexts can be targeted to improve negative expressions and impacts of the HC.

Contexte: Bien que la recherche suggère que les expressions du curriculum caché (CC) ont le potentiel de renforcer ou de miner les valeurs d'un établissement, très peu d'études ont mesuré de manière exhaustive sa portée, ses effets et les divers contextes d'enseignement et d'apprentissage cliniques dans lesquels elles se produisent. Nous avons exploré le CC, examiné la validité de nouvelles notions et déterminé l'influence du contexte sur le CC. Méthodes: Entre 2019 et 2020, nous avons interrogé des étudiants (n =182), des résidents (n =148) et des membres du corps professoral (n = 140) de notre établissement, toutes disciplines médicales confondues. Sur la base de recherches et d'expertises antérieures, nous avons mesuré l'expérience des participants par rapport au CC, y compris leurs perceptions du respect ou du non-respect des diverses disciplines médicales, les contextes dans lesquels ils ont été confrontés au CC, les effets et l'efficacité du CC, les perceptions de l'établissement et les actions personnelles des participants. Nous avons examiné la structure factorielle, la fiabilité et la validité des notions du CC à l'aide d'une analyse factorielle exploratoire, du coefficient alpha de Cronbach, d'une analyse de régression et des corrélations de Pearson. Résultats: Des juges experts (médecins enseignants et apprenants) ont confirmé la validité du contenu des éléments utilisés et l'analyse a révélé de nouvelles notions du CC reflétant des expressions et des effets négatifs, des expressions et des effets positifs, des actions personnelles et des perceptions positives du CC au sein des établissements. La validité de critère a été démontrée pour les notions d'impacts négatifs et d'actions personnelles et a été associée de manière significative à l'étape de la carrière des répondants et à leur sexe. La validité convergente a été confirmée pour les notions de CC qui étaient significativement corrélées à certains contextes dans lesquels le CC se manifeste. Conclusion: Il existe plus de dimensions et de contextes uniques du CC que ceux qui avaient été documentés par le passé. Nos résultats montrent que des contextes cliniques spécifiques peuvent être ciblés pour améliorer les expressions et les effets négatifs du CC.

Body mass, temperature, and pathogen intensity differentially affect critical thermal maxima and their population-level variation in a solitary bee.

Climate change presents a major threat to species distribution and persistence. Understanding what abiotic or biotic factors influence the thermal tolerances of natural populations is critical to assessing their vulnerability under rapidly changing thermal regimes. This study evaluates how body mass, local climate, and pathogen intensity influence heat tolerance and its population-level variation (SD) among individuals of the solitary bee Xenoglossa pruinosa. We assess the sex-specific relationships between these factors and heat tolerance given the differences in size between sexes and the ground-nesting behavior of the females. We collected X. pruinosa individuals from 14 sites across Pennsylvania, USA, that varied in mean temperature, precipitation, and soil texture. We measured the critical thermal maxima (CTmax) of X. pruinosa individuals as our proxy for heat tolerance and used quantitative PCR to determine relative intensities of three parasite groups-trypanosomes, Spiroplasma apis (mollicute bacteria), and Vairimorpha apis (microsporidian). While there was no difference in CTmax between the sexes, we found that CTmax increased significantly with body mass and that this relationship was stronger for males than for females. Air temperature, precipitation, and soil texture did not predict mean CTmax for either sex. However, population-level variation in CTmax was strongly and negatively correlated with air temperature, which suggests that temperature is acting as an environmental filter. Of the parasites screened, only trypanosome intensity correlated with heat tolerance. Specifically, trypanosome intensity negatively correlated with the CTmax of female X. pruinosa but not males. Our results highlight the importance of considering size, sex, and infection status when evaluating thermal tolerance traits. Importantly, this study reveals the need to evaluate trends in the variation of heat tolerance within and between populations and consider implications of reduced variation in heat tolerance for the persistence of ectotherms in future climate conditions.

Qualitative Evaluation of a Pilot Physician Training Program in Long-Term Care Facilities in Switzerland.

Increasing demand for long-term care facilities (LTCFs) and increasingly complex medical needs of LTCF residents necessitate recruiting new physician graduates and developing programs which provide them with experience and specific skills in geriatric and palliative medicine. We developed an educational program for physicians in training, which combines 1 year of immersion at 20% full-time equivalent with (1) theoretical teaching, (2) clinical exposure under the supervision of a senior LTCF physician, and (3) structured case presentations and debriefing with experienced geriatricians. This article presents a preliminary qualitative evaluation of this program from the perspectives of the trainees, supervising physicians, and public health stakeholders. The program was well accepted by all parties and showed positive effects on trainees' interest in long-term care medicine. Suggestions for improving future programs and their implementation are provided.

"What Is the Most Important to Them?" Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity.

INTRODUCTION: Multiple morbidities, including neurodegenerative diseases such as dementia, which result in diminished decision-making capacity (DMC), make care and care planning complicated for residential aged care facility (RACF) residents. While advance care planning has been highlighted as essential for ensuring that this population receives care that is coherent with their wishes, there are few models specifically designed for this population. This study aimed to explore the current practices for care planning and decision-making for Swiss RACF residents who no longer have medical DMC. METHODS: Semi-structured focus groups were conducted with 23 nurses in three RACFs and with 13 physicians working in 9 RACFs. Semi-structured interviews were conducted with 18 health care proxies of 16 residents without DMC. Thematic analysis was conducted to identify the most salient themes across the dataset. RESULTS: Analyses identified many collaborative processes between nurses, physicians, and health care proxies including family meetings, reconstructing residents' presumed will, making anticipatory decisions, and documenting these decisions. These processes were, however, highly variable and differed between institutions and between residents within each facility, with a lack of standardization. This variability was highlighted to be problematic for information transmission within facilities and in case of hospital or facility transfer. CONCLUSIONS: These results highlight the importance of standardized yet flexible processes of care planning for people who no longer have DMC and provide insights for the development of such models specifically designed to address this problem.

Delayed Diagnosis of Human Immunodeficiency Virus in the Latino Population at a Federally Qualified Community Health Center in New Jersey.

Late diagnosis of human immunodeficiency virus (HIV) is associated with early progression to acquired immunodeficiency syndrome (AIDS). We examined racial/ethnic differences in presentation with advanced HIV/AIDS at a community health center in New Jersey. Records of patients diagnosed with HIV between 1990 and 2018 were reviewed. Odds ratios (OR) of presenting with AIDS at HIV diagnosis were computed in unadjusted and adjusted models. There were 182 (48.3%) Latino, 48 (12.7%) non-Latino White (NLW), 130 (34.5%) non-Latino Black, and 17 (4.5%) non-Latino of other race/ethnicity included in the analysis. Over 75% of the Latinos were foreign-born. Latino patients had higher odds of presentation with AIDS at time of HIV diagnosis than NLW in unadjusted (OR = 4.85, 95% confidence interval (95% CI): 2.28-10.31) and adjusted models (OR = 3.71, 95%CI: 1.60-8.59). Latino patients, particularly foreign-born and bisexual, had higher odds of being diagnosed with AIDS at presentation with HIV in this cohort.

Fish consumption and omega-3 polyunsaturated fatty acids from diet are positively associated with cognitive function in older adults even in the presence of exposure to lead, cadmium, selenium, and methylmercury: a cross-sectional study using NHANES 2011-2014 data.

BACKGROUND: Long-chain omega-3 polyunsaturated fatty acids (ω-3 PUFAs) are reported to be beneficial for cognition, but limited consumption of some fish is recommended due to high concentrations of heavy metals and persistent organics. OBJECTIVE: We aimed to determine whether dietary ω-3 PUFAs from fish consumption are associated with higher cognitive scores in older adults and explored the associations of mixtures of ω-3 PUFAs and blood concentrations of lead, cadmium, selenium, and methylmercury on cognitive performance. METHODS: We conducted a cross-sectional study with data from the NHANES 2011-2014, assessing cognitive scores of immediate recall, delayed recall, and executive function in adults ≥60 y (n = 3123). We performed multivariate linear regressions and mixture models utilizing the quantile-based g-computation method to identify associations between monthly fish consumption or dietary ω-3 PUFAs with blood concentrations of lead, cadmium, methyl mercury, and selenium on cognitive scores. RESULTS: Fish consumption had significant positive associations with all 3 cognitive scores, whereas dietary ω-3 PUFAs were only significantly associated with the Digit Symbol Substitution Test (DSST) scores. Mixture analysis showed significant positive associations with DSST scores for fish consumption (ß: 0.88; 95% CI: 0.48, 1.29) and dietary ω-3 PUFAs (ß: 0.41; 95% CI: 0.03, 0.78) with positive component weights for fish consumption, dietary ω-3 PUFAs, and blood selenium and negative component weight for blood cadmium concentrations. CONCLUSIONS: Our findings support dietary recommendations for older adults to consume fish to maintain cognitive function, likely due to biomolecular actions of ω-3 PUFAs that increase neuronal membrane fluidity, have antioxidation activity, and restore cell damage. The combination of selenium and fish consumption or ω-3 PUFAs was associated with reduced decline in cognitive scores and less negative associations from exposures to lead, cadmium, and mercury compounds.

Different volatile organic compounds in local point source air pollution pose distinctive elevated risks for respiratory disease-associated emergency room visits.

Air pollution increases risk of respiratory disease but prior research has focused on particulate matter and criteria air pollutants, and there are few studies on respiratory effects of volatile organic compounds (VOC). We examined zip code level relationships between emergency room (ER) visits for respiratory illness and VOC pollution in New York State from 2010 to 2018. Detailed information on VOC pollution was derived from the National Emissions Inventory, which provides point source information on VOC emissions at the zip code level. We considered four respiratory diseases: asthma, acute upper respiratory infections, chronic obstructive pulmonary disease (COPD), and lower respiratory disease, using mixed effects regression with a random intercept to account for county level variability in single pollutant models, and Random Forest Regression (RFR) to assess relative importance of VOC exposures when considered together in multipollutant models. Single pollutant models show associations between respiratory-related ER visits with all pollutants of interest across all study years, even after adjusting for poverty and smoking by zip code. The largest relative single pollutant effect sizes considered included benzene, ethylbenzene, and total (summed) VOCs. Results from RFR including all VOC exposures indicate that ethylbenzene has the greatest variable importance for asthma, acute upper respiratory infections, and COPD, with toluene and benzene most important for lower respiratory ailments. RFR results also demonstrate presence of pairwise interactive effects between VOC pollutants. Our findings show that local VOC pollution may offer a significant contribution to the risk of respiratory disease-related ER visits, and that effects vary by illness and by VOC compound. ER visit rates for respiratory illness were elevated in high poverty zip codes, although this may be attributable to the fact that the poor lack basic access to health care and use ERs more frequently for routine care.

LAparoscopic Versus Abdominal hysterectomy (LAVA): protocol of a randomised controlled trial.

INTRODUCTION: There is uncertainty about the advantages and disadvantages of laparoscopic hysterectomy compared with abdominal hysterectomy, particularly the relative rate of complications of the two procedures. While uptake of laparoscopic hysterectomy has been slow, the situation is changing with greater familiarity, better training, better equipment and increased proficiency in the technique. Thus, a large, robust, multicentre randomised controlled trial (RCT) is needed to compare contemporary laparoscopic hysterectomy with abdominal hysterectomy to determine the safest and most cost-effective technique. METHODS AND ANALYSIS: A parallel, open, non-inferiority, multicentre, randomised controlled, expertise-based surgery trial with integrated health economic evaluation and an internal pilot with an embedded qualitative process evaluation. A within trial-based economic evaluation will explore the cost-effectiveness of laparoscopic hysterectomy compared with open abdominal hysterectomy. We will aim to recruit 3250 women requiring a hysterectomy for a benign gynaecological condition and who were suitable for either laparoscopic or open techniques. The primary outcome is major complications up to six completed weeks postsurgery and the key secondary outcome is time from surgery to resumption of usual activities using the personalised Patient-Reported Outcomes Measurement Information System Physical Function questionnaire. The principal outcome for the economic evaluation is to be cost per QALY at 12 months' postsurgery. A secondary analysis is to be undertaken to generate costs per major surgical complication avoided and costs per return to normal activities. ETHICS AND DISSEMINATION: The study was approved by the West Midlands-Edgbaston Research Ethics Committee, 18 February 2021 (Ethics ref: 21/WM/0019). REC approval for the protocol version 2.0 dated 2 February 2021 was issued on 18 February 2021.We will present the findings in national and international conferences. We will also aim to publish the findings in high impact peer-reviewed journals. We will disseminate the completed paper to the Department of Health, the Scientific Advisory Committees of the RCOG, the Royal College of Nurses (RCN) and the BSGE. TRIAL REGISTRATION NUMBER: ISRCTN14566195.

Effects of mixtures of polychlorinated biphenyls (PCBs) and three organochlorine pesticides on cognitive function differ between older Mohawks at Akwesasne and older adults in NHANES.

BACKGROUND: Akwesasne Mohawks has been exposed to high concentrations of polychlorinated biphenyls (PCBs) and background levels of organochlorine pesticides, hexachlorobenzene (HCB), dichlorodiphenyl dichloroethylene (DDE), and mirex. We have previously reported relative contributions to the mixture of low- and high-chlorinated PCBs, HCB, and DDE on cognitive decrements in Mohawks of various ages. OBJECTIVE: This study examines differences in the mixture effects of PCB congener groups, HCB, DDE, and mirex on cognitive function in older Mohawks and less PCB-exposed older adults from the National Health and Nutrition Examination Survey (NHANES) 1999-2002 cycles. METHODS: We used Bayesian kernel machine regression (BKMR) to evaluate the mixture effects of different PCB congener groups, HCB, DDE, and mirex on cognitive function in both populations. Models were adjusted for age, sex, education levels, and race/ethnicity focusing on individuals 60 years and older. RESULTS: Older Mohawks had 3-fold higher mean total PCB concentrations and 1.8-fold higher mirex, but slightly lower mean DDE and HCB levels than NHANES older adults. Higher mixture concentrations were significantly associated with greater cognitive decline. In older Mohawks, low- and high-chlorinated PCBs, HCB, and DDE contributed to the cognitive score decline. In contrast, score decline in older NHANES adults were primarily from high-chlorinated PCBs and DDE with a threshold dose of approximately 2.08-2.27 ng/g and 2.02-2.40 ng/g, respectively. CONCLUSION: Mixtures of PCBs and organochlorine pesticides increase the risk of cognitive decline in both older Mohawks and NHANES older adults. However, contributions to these mixture effects show significant differences. In older Mohawks, high- and low-chlorinated PCBs, DDE, and HCB are the primary contributors, while high-chlorinated PCBs and DDE are important contributors in NHANES older adults. Due to chronic heavy exposures to PCBs, older Mohawks had a significantly increased risk of cognitive decline compared to general older adults from NHANES.

Lights, fluorescence, action-Influencing wound treatment plans including debridement of bacteria and biofilms.

High bacterial loads within chronic wounds increase the risk of infection and complication. Detection and localization of bacterial loads through point-of-care fluorescence (FL) imaging can objectively inform and support bacterial treatment decisions. This single time-point, retrospective analysis describes the treatment decisions made on 1000 chronic wounds (DFUs, VLUs, PIs, surgical wounds, burns, and others) at 211 wound-care facilities across 36 US states. Clinical assessment findings and treatment plans derived from them, as well as subsequent FL-imaging (MolecuLight®) findings and any associated treatment plan changes, were recorded for analysis. FL signals indicating elevated bacterial loads were observed in 701 wounds (70.8%), while only 293 (29.6%) showed signs/symptoms of infection. After FL-imaging, treatment plans changed in 528 wounds as follows: more extensive debridement (18.7%), more extensive hygiene (17.2%), FL-targeted debridement (17.2%), new topical therapies (10.1%), new systemic antibiotic prescriptions (9.0%), FL-guided sampling for microbiological analysis (6.2%), and changes in dressing selection (3.2%). These real-world findings of asymptomatic bacterial load/biofilm incidence, and of the frequent treatment plan changes post-imaging, are in accordance with clinical trial findings using this technology. These data, from a range of wound types, facilities, and clinician skill sets, suggest that point-of-care FL-imaging information improves bacterial infection management.

A National Survey of Hereditary Angioedema and Acquired C1 Inhibitor Deficiency in the United Kingdom.

BACKGROUND: Detailed demographic data on people with hereditary angioedema (HAE) and acquired C1 inhibitor deficiency in the United Kingdom are relatively limited. Better demographic data would be beneficial in planning service provision, identifying areas of improvement, and improving care. OBJECTIVE: To obtain more accurate data on the demographics of HAE and acquired C1 inhibitor deficiency in the United Kingdom, including treatment modalities and services available to patients. METHODS: A survey was distributed to all centers in the United Kingdom that look after patients with HAE and acquired C1 inhibitor deficiency to collect these data. RESULTS: The survey identified 1152 patients with HAE-1/2 (58% female and 92% type 1), 22 patients with HAE with normal C1 inhibitor, and 91 patients with acquired C1 inhibitor deficiency. Data were provided by 37 centers across the United Kingdom. This gives a minimum prevalence of 1:59,000 for HAE-1/2 and 1:734,000 for acquired C1 inhibitor deficiency in the United Kingdom. A total of 45% of patients with HAE were on long-term prophylaxis (LTP) with the most used medication being danazol (55% of all patients on LTP). Eighty-two percent of patients with HAE had a home supply of acute treatment with C1 inhibitor or icatibant. A total of 45% of patients had a supply of icatibant and 56% had a supply of C1 inhibitor at home. CONCLUSIONS: Data obtained from the survey provide useful information about the demographics and treatment modalities used in HAE and acquired C1 inhibitor deficiency in the United Kingdom. These data are useful for planning service provision and improving services for these patients.