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Background: Hereditary angioedema (HAE) is a genetic disorder characterized by re-occurring swelling episodes called "attacks," usually in the limbs, face, airways, and intestinal tract. New prophylactic therapies have reduced the frequency of these attacks. This study describes results from a literature review and clinician interviews assessing patient HAE symptom experiences and timing, and then evaluates whether existing patient-reported outcome (PRO) tools adequately reflect this experience., Methods: A targeted literature review as well as interviews with key opinion leaders (KOLs), were conducted to capture information about the patient experience and their symptoms. An assessment of various PROs was then conducted to determine how well they each covered HAE symptoms and impacts., Results: Nineteen HAE symptoms were identified. KOLs reported that patients on prophylactic therapy experienced some symptoms indicating an attack was imminent, but then never experienced an attack. The comparison of the different PROs found that the Hereditary Angioedema Patient-Reported Outcome was the instrument that most thoroughly examined the symptoms of patients with HAE., Conclusions: Given the introduction of new prophylactic therapies, further research is needed to determine the effect of being attack-free for longer periods of time on health-related quality of life., (© 2022. The Author(s).)

In this letter to the editor, we present results of claims data analysis. This claims data analysis supports a hypothesis that in patients with hereditary angioedema due to C1-esterase inhibitor (C1-INH) deficiency, the occurrence and/or symptomatology of coexisting autoimmune disease may be positively influenced by a replacement therapy with plasma derived C1-INH., Competing Interests: Competing interestsHF is a speaker and consultant to CSL Behring, Pharming, Biocryst, Octapharma, and Shire. DL is a researcher, speaker, and consultant to CSL Behring and speaker and consultant to Takeda. MF is a consultant to CSL Behring. DS, MB, and SP are employees of CSL Behring. MB also holds company’s stock., (© The Author(s) 2020.)

Aim: This study compared functioning and productivity in individuals meeting Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for binge eating disorder (BED) to those without BED., Methods: A sample of US adults from the National Health and Wellness Survey completed an Internet survey in October 2013. In addition to BED diagnostic criteria, the survey assessed functional impairment and productivity, respectively, using the Sheehan Disability Scale (SDS) and Work Productivity and Activity Impairment (WPAI) questionnaire. Differences between BED and non-BED respondents were assessed using multivariate models controlling for factors, including age, sex and comorbidities., Results: Of 22 397 respondents, 344 were categorised as BED respondents and 20 437 as non-BED respondents. Compared with non-BED respondents, BED respondents exhibited significantly (all P<.001) greater functional impairment on the SDS, as measured by mean±SD total (14.04±9.46 vs 3.41±6.36), work/school (3.86±3.62 vs 1.01±2.21), social life/leisure activities (5.29±3.49 vs 1.22±2.33) and family life/home responsibilities (4.89±3.44 vs 1.18±2.26) scores. Adjusted odds ratios (95% CIs) indicated that BED respondents were more impaired than non-BED respondents on the work/school (4.24 [3.33-5.40]), social life/leisure activities (6.37 [4.97-8.15]) and family life/home responsibilities (5.76 [4.51-7.34]) domains of the SDS. On the WPAI, BED respondents reported significantly (all P<.001) higher percentages (mean±SD) of absenteeism (9.59%±19.97% vs 2.90%±12.95%), presenteeism (30.00%±31.64% vs 10.86%±20.07%), work productivity loss (33.19%±33.85% vs 12.60%±23.22%) and activity impairment (43.52%±34.36% vs 19.94%±27.22%) than non-BED respondents., Conclusions: The findings suggest individuals with BED experience considerable impairment in functioning and work productivity compared with individuals without BED., (© 2017 The Authors. International Journal of Clinical Practice Published by John Wiley & Sons Ltd.)

Background: To estimate health-related quality-of-life changes in patients with hereditary angioedema due to C1-inhibitor (C1-INH) deficiency who received subcutaneous C1-INH with recombinant hyaluronidase (rHuPH20) for attack prophylaxis in a randomized, double-blind, dose-ranging, cross-over study., Methods: Patients with type I/II hereditary angioedema received 1000 U of C1-INH with 24,000 U of rHuPH20 or 2000 U of C1-INH with 48,000 U of rHuPH20 every 3-4 days for 8 weeks and then crossed over for another 8-week period. The study was terminated early as a precaution related to non-neutralizing antibodies to rHuPH20. The Angioedema Quality of Life questionnaire (AE-QoL) was administered at weeks 1 and 5 of both periods, and at 1 week after the second treatment period. Changes in AE-QoL scores were calculated over both treatment periods and within each treatment period for patients with ≥4 weeks of treatment., Results: Forty-one patients had evaluable AE-QoL data, and 22 patients completed treatment. At screening, 43% of the patients were receiving intravenous C1-INH. A significant average AE-QoL total score decline (improvement) of -8.1 (95% confidence interval, -13.7 to -2.5) was observed from baseline to the end of the study, and significant AE-QoL score declines were observed in the Functioning, Fear/Shame, and Nutrition domains. Patients on 2000 U reported higher mean AE-QoL score declines in Functioning and Nutrition domains relative to the 1000 U dose. Overall, 43.9% of all the patients, 45.5% of the study completers, and 46.7% of the nonprophylaxis users at baseline on high treatment doses achieved a reduction in the AE-QoL total score of six points., Conclusion: Despite early termination and prestudy prophylactic intravenous C1-INH use by 43% of the patients, improved AE-QoL scores were observed after ≤16 weeks of subcutaneous C1-INH-rHuPH20 prophylaxis.

Purpose: To perform a systematic review of the health-related quality of life (HRQoL) and economic burdens of anorexia nervosa (AN), bulimia nervosa (BN), and binge eating disorder (BED)., Methods: A systematic literature search of English-language studies was performed in Medline, Embase, PsycINFO, PsycARTICLES, Academic Search Complete, CINAHL Plus, Business Source Premier, and Cochrane Library. Cost data were converted to 2014 Euro., Results: Sixty-nine studies were included. Data on HRQoL were reported in 41 studies (18 for AN, 17 for BN, and 18 for BED), on healthcare utilization in 20 studies (14 for AN, 12 for BN, and 8 for BED), and on healthcare costs in 17 studies (9 for AN, 11 for BN, and only 2 for BED). Patients' HRQoL was significantly worse with AN, BN, and BED compared with healthy populations. AN, BN, and BED were associated with a high rate of hospitalization, outpatient care, and emergency department visits. However, patients rarely received specific treatment for their eating disorder. The annual healthcare costs for AN, BN, and BED were €2993 to €55,270, €888 to €18,823, and €1762 to €2902, respectively., Conclusions: AN, BN, and BED have a serious impact on patient's HRQoL and are also associated with increased healthcare utilization and healthcare costs. The burden of BED should be examined separately from that of BN. The limited evidence suggests that further research is warranted to better understand the differences in long-term HRQoL and economic burdens of AN, BN, and BED., Competing Interests: Compliance with ethical standardsFundingThis research was financially supported by Shire Development LLC (Lexington, MA, USA).Conflicts of interestTamás Ágh, Gábor Kovács, and Zoltán Vokó are employees of the Syreon Research Institute. Dylan Supina was an employee of Shire at the time this research was conducted and holds stock and/or stock options in Shire. Manjiri Pawaskar was an employee of Shire at the time this research was conducted and is now an employee of Merck; she holds stock and/or stock options in Shire and Merck. Barry K. Herman is an employee of Shire and holds stock and/or stock options in Shire Development LLC. David V. Sheehan has served as a consultant to Shire and is the creator of a scale that measures functional impairment (Sheehan Disability Scale).Ethical approvalThis article does not contain any studies with human participants or animals performed by any of the author.Informed consentFor this type of study, formal consent is not required.

Objective: In 2013 binge-eating disorder (BED) was recognized as a formal diagnosis, but was historically included under the diagnosis code for eating disorder not otherwise specified (EDNOS). This study compared the characteristics and use of treatment modalities in BED patients to those with EDNOS without BED (EDNOS-only) and to matched-patients with no eating disorders (NED)., Methods: Patients were identified for this study from electronic health records in the Department of Veterans Affairs from 2000 to 2011. Patients with BED were identified using natural language processing and patients with EDNOS-only were identified by ICD-9 code (307.50). First diagnosis defined index date for these groups. NED patients were frequency matched to BED patients up to 4:1, as available, on age, sex, BMI, depression, and index month encounter. Baseline characteristics and use of treatment modalities during the post-index year were compared using t-tests or chi-square tests., Results: There were 593 BED, 1354 EDNOS-only, and 1895 matched-NED patients identified. Only 68 patients with BED had an EDNOS diagnosis. BED patients were younger (48.7 vs. 49.8years, p=0.04), more were male (72.2% vs. 62.8%, p<0.001) and obese (BMI 40.2 vs. 37.0, p<0.001) than EDNOS-only patients. In the follow-up period fewer BED (68.0%) than EDNOS-only patients (87.6%, p<0.001), but more BED than NED patients (51.9%, p<0.001) used at least one treatment modality., Discussion: The characteristics of BED patients were different from those with EDNOS-only and NED as was their use of treatment modalities. These differences highlight the need for a separate identifier of BED., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Objectives: Binge eating disorder (BED)--now a designated disorder in the DSM-5--is the most prevalent eating disorder (ED), affecting 2-3% of the US population. This survey of US physicians assesses how BED is diagnosed, treated and referred., Methods: Internists, family practitioners, obstetrics/gynecologist (OB/GYNs) and psychiatrists were randomly selected from a nationally-representative panel. Participants completed an online survey and reviewed case vignettes consistent with DSM-5-defined BED, then answered questions to elicit whether they would assess for psychiatric conditions including EDs. Those reporting they would screen and who correctly identified BED in vignettes received additional questions about BED diagnosis, treatment, and referral patterns., Results: Of 278 physicians surveyed, 96% were board-certified and 87% had practiced >10 years. 23% were psychiatrists, 27% family practitioners, 31% internists and 19% OB/GYNs. 92% were 'somewhat likely' to screen for ED after reviewing DSM-5-consistent vignettes. 206 (74%) correctly identified BED. Of these, 33% and 68% reported they proactively screen eating habits for all patients and obese patients, respectively. 10% reported not screening eating habits even in the presence of ED symptoms. Fewer than half reported using DSM criteria in Diagnosing BED, and 56 (27%) did not recognize BED to be a discreet ED., Conclusion: Although ED awareness is improving, understanding BED as a distinct ED is lacking, which may result in low rates of screening and diagnosis. This study illustrates how taking a complete patient history (including probing BED characteristics) may be an effective first-line strategy for clinicians to facilitate optimal care for these patients.

Objective: The objective of this study was to compare the one-year healthcare costs and utilization of patients with binge-eating disorder (BED) to patients with eating disorder not otherwise specified without BED (EDNOS-only) and to matched patients without an eating disorder (NED)., Methods: A natural language processing (NLP) algorithm identified adults with BED from clinical notes in the Department of Veterans Affairs (VA) electronic health record database from 2000 to 2011. Patients with EDNOS-only were identified using ICD-9 code (307.50) and those with NLP-identified BED were excluded. First diagnosis date defined the index date for both groups. Patients with NED were randomly matched 4:1, as available, to patients with BED on age, sex, BMI, depression diagnosis, and index month. Patients with cost data (2005-2011) were included. Total healthcare, inpatient, outpatient, and pharmacy costs were examined. Generalized linear models were used to compare total one-year healthcare costs while adjusting for baseline patient characteristics., Results: There were 257 BED, 743 EDNOS-only, and 823 matched NED patients identified. The mean (SD) total unadjusted one-year costs, in 2011 US dollars, were $33,716 ($38,928) for BED, $37,052 ($40,719) for EDNOS-only, and $19,548 ($35,780) for NED patients. When adjusting for patient characteristics, BED patients had one-year total healthcare costs $5,589 higher than EDNOS-only (p = 0.06) and $18,152 higher than matched NED patients (p < 0.001)., Discussion: This study is the first to use NLP to identify BED patients and quantify their healthcare costs and utilization. Patients with BED had similar one-year total healthcare costs to EDNOS-only patients, but significantly higher costs than patients with NED., (© 2015 Wiley Periodicals, Inc.)

Purpose: To perform a systematic review on the epidemiology, the health-related quality of life (HRQoL) and economic burden of binge eating disorder (BED)., Methods: A systematic literature search of English-language articles was conducted using Medline, Embase, PsycINFO, PsycARTICLES, Academic Search Complete, CINAHL Plus, Business Source Premier and Cochrane Library. Literature search on epidemiology was limited to studies published between 2009 and 2013. Cost data were inflated and converted to 2012 US$ purchasing power parities. All of the included studies were assessed for quality., Results: Forty-nine articles were included. Data on epidemiology were reported in 31, HRQoL burden in 16, and economic burden in 7 studies. Diagnosis of BED was made using 4th Edition of The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) criteria in 46 studies. Lifetime prevalence of BED was 1.1-1.9% in the general population (DSM-IV). BED was associated with significant impairment in aspects of HRQoL relating to both physical and mental health; the Short Form 36 Physical and Mental Component Summary mean scores varied between 31.1 to 47.3 and 32.0 to 49.8, respectively. Compared to individuals without eating disorder, BED was related to increased healthcare utilization and costs. Annual direct healthcare costs per BED patient ranged between $2,372 and $3,731., Conclusions: BED is a serious eating disorder that impairs HRQoL and is related to increased healthcare utilization and healthcare costs. The limited literature warrants further research, especially to better understand the long-term HRQoL and economic burden of BED.