Current Medical Management of Hereditary Angioedema: Follow-up Survey of US Physicians

Journal of Allergy and Clinical Immunology: In Practice

Volumn 3, Issue 2, 2015, Pages 220-227

  Riedl, Marc A ^a   Banerji, Aleena ^b   Gower, Richard ^c  

^a UNIVERSITY OF CALIFORNIA SAN DIEGO   (United States)

^b MASSACHUSETTS GENERAL HOSPITAL   (United States)

^c Marycliff Allergy Specialists   (United States)

Author keywords

Antifibrinolytics; C1 INH; Danazol; Ecallantide; Hereditary angioedema; Home treatment; Icatibant; Long term prophylaxis; On demand therapy; Self administration; Short term prophylaxis

Indexed keywords

AMINOCAPROIC ACID; ANALGESIC AGENT; ANDROGEN; COMPLEMENT COMPONENT C1S INHIBITOR; DANAZOL; ECALLANTIDE; FRESH FROZEN PLASMA; ICATIBANT; OXANDROLONE; STANOZOLOL;

ADOLESCENT; ADULT; ANGIONEUROTIC EDEMA; ARTICLE; CHEMOPROPHYLAXIS; CHILD; CLINICAL PRACTICE; CONTROLLED STUDY; DRUG PREFERENCE; DRUG USE; EMERGENCY WARD; FOLLOW UP; HEALTH CARE COST; HEALTH INSURANCE; HOME CARE; HOSPITALIZATION; HUMAN; MAJOR CLINICAL STUDY; PATIENT SATISFACTION; PHYSICIAN; QUESTIONNAIRE; REHYDRATION; SELF CARE; UNITED STATES; ANGIOEDEMAS, HEREDITARY; EMERGENCY HEALTH SERVICE; STATISTICS AND NUMERICAL DATA;

ANGIOEDEMAS, HEREDITARY; COMPLEMENT C1 INHIBITOR PROTEIN; DANAZOL; EMERGENCY SERVICE, HOSPITAL; HOSPITALIZATION; HUMANS; PATIENT SATISFACTION; PHYSICIANS; SURVEYS AND QUESTIONNAIRES; UNITED STATES;

EID: 84924232957     PISSN: 22132198     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jaip.2014.08.017     Document Type: Article

References (35)

1. Zuraw B.L. Clinical practice. Hereditary angioedema. NEngl J Med 2008, 359:1027-1036.
2. Bork K., Meng G., Staubach P., Hardt J. Hereditary angioedema: new findings concerning symptoms, affected organs, and course. Am J Med 2006, 119:267-274.
3. Cugno M., Zanichelli A., Bellatorre A.G., Griffini S., Cicardi M. Plasma biomarkers of acute attacks in patients with angioedema due to C1-inhibitor deficiency. Allergy 2009, 64:254-257.
4. Bork K., Barnstedt S.E., Koch P., Traupe H. Hereditary angioedema with normal C1-inhibitor activity in women. Lancet 2000, 356:213-217.
5. Binkley K.E., Davis A. Clinical, biochemical, and genetic characterization of a novel estrogen-dependent inherited form of angioedema. Clin Immunol 2000, 106:546-550.
6. Zuraw B.L., Bork K., Binkley K.E., Banerji A., Christiansen S.C., Castaldo A., et al. Hereditary angioedema with normal C1 inhibitor function: consensus of an international expert panel. Allergy Asthma Proc 2012, 33:S145-S156.
7. Bygum A. Hereditary angio-oedema in Denmark: a nationwide survey. Br J Dermatol 2009, 161:1153-1158.
8. Bouillet L., Launay D., Fain O., Boccon-Gibod I., Laurent J., Martin L., et al. Hereditary angioedema with C1 inhibitor deficiency: clinical presentation and quality of life of 193 French patients. Ann Allergy Asthma Immunol 2013, 111:290-294.
9. Gomide M.A., Toledo E., Valle S.O., Campos R.A., França A.T., Gomez N.P., et al. Hereditary angioedema: quality of life in Brazilian patients. Clinics (Sao Paulo) 2013, 68:81-83.
10. Lumry W.R., Castaldo A.J., Vernon M.K., Blaustein M.B., Wilson D.A., Horn P.T. The humanistic burden of hereditary angioedema: impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc 2010, 31:407-414.
11. Fouche A.S., Saunders E.F., Craig T. Depression and anxiety in patients with hereditary angioedema [e-pub ahead of print]. Ann Allergy Asthma Immunol 2014, 112:371-375.
12. Huang S.W. Results of an on-line survey of patients with hereditary angioedema. Allergy Asthma Proc 2004, 25:127-131.
13. Bewtra A.K., Levy R.J., Jacobson K.W., Wasserman R.L., Machnig T., Craig T.J. C1-inhibitor therapy for hereditary angioedema attacks: prospective patient assessments of health-related quality of life. Allergy Asthma Proc 2012, 33:427-431.
14. Bygum A., Aygören-Pürsün E., Caballero T., Beusterien K., Gholizadeh S., Musingarimi P., et al. The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe): background and methodology. BMC Dermatol 2012, 12:4.
15. Caballero T., Aygören-Pürsün E., Bygum A., Beusterien K., Hautamaki E., Sisic Z., et al. The humanistic burden of hereditary angioedema: results from the Burden of Illness Study in Europe. Allergy Asthma Proc 2013, 34:1-7.
16. Kalbitor (ecallantide) [prescribing information] 2009, Dyax Corp, Cambridge, Mass.
17. Riedl M., Gower R.G., Chrvala C.A. Current medical management of hereditary angioedema: results from a large survey of US physicians. Ann Allergy Asthma Immunol 2011, 106:316-322.
18. Bowen T., Cicardi M., Farkas H., Bork K., Longhurst H.J., Zuraw B., et al. 2010 International consensus algorithm for the diagnosis, therapy and management of hereditary angioedema. Allergy Asthma Clin Immunol 2010, 6:24.
19. Cicardi M., Bork K., Caballero T., Craig T., Li H.H., Longhurst H., et al. Evidence-based recommendations for the therapeutic management of angioedema owing to hereditary C1 inhibitor deficiency: consensus report of an International Working Group. Allergy 2012, 67:147-157.
20. Cicardi M., Craig T.J., Martinez-Saguer I., Hébert J., Longhurst H.J. Review of recent guidelines and consensus statements on hereditary angioedema therapy with focus on self-administration. Int Arch Allergy Immunol 2013, 161(Suppl 1):3-9.
21. Craig T.J., Aygören-Pürsün E., Bork K. WAO Guideline for the Management of Hereditary Angioedema. World Allergy Organ J 2012, 5:182-199.
22. Longhurst H.J., Farkas H., Craig T., Aygören-Pürsün E., Bethune C., Bjorkander J., et al. HAE international home therapy consensus document. Allergy Asthma Clin Immunol 2010, 6:22.
23. Wahn V., Aberer W., Eberl W., Fahauer M., Kühne T., Kurnik K., et al. Hereditary angioedema (HAE) in children and adolescents: a consensus on therapeutic strategies. Eur J Pediatr 2012, 171:1339-1348.
24. Prematta M., Gibbs J.G., Pratt E.L., Stoughton T.R., Craig T.J. Fresh frozen plasma for the treatment of hereditary angioedema. Ann Allergy Asthma Immunol 2007, 98:383-388.
25. Kalaria S., Craig T. Assessment of hereditary angioedema treatment risks. Allergy Asthma Proc 2013, 34:519-522.
26. Levi M., Choi G., Picavet C., Hack C.E. Self-administration of C1-inhibitor concentrate in patients with hereditary or acquired angioedema caused by C1-inhibitor deficiency. JAllergy Clin Immunol 2006, 117:904-908.
27. Kreuz W., Rusicke E., Martinez-Saguer I., Aygören-Pürsün E., Heller C., Klingebiel T. Home therapy with intravenous human C1-inhibitor in children and adolescents with hereditary angioedema. Transfusion 2012, 52:100-107.
28. Aygören-Pürsün E., Martinez-Saguer I., Rusicke E., Klingebiel T., Kreuz W. On demand treatment and home therapy of hereditary angioedema in Germany: the Frankfurt experience. Allergy Asthma Clin Immunol 2010, 6:21.
29. Maurer M., Aberer W., Bouillet L., Caballero T., Fabien V., Kanny G., et al. Hereditary angioedema attacks resolve faster and are shorter after early icatibant treatment. PLoS One 2013, 8:e53773.
30. Tourangeau L.M., Castaldo A.J., Davis D.K., Koziol J., Christiansen S.C., Zuraw B.L. Safety and efficacy of physician-supervised self-managed C1 inhibitor replacement therapy. Int Arch Allergy Immunol 2012, 157:417-424.
31. Shapiro R. Intravenous self-administration of C1-INH concentrate for hereditary angioedema: a retrospective report of real-world experience in 13 patients. Journal of Angioedema 2013, 1:2-8. Available from:, Accessed April 3, 2014. http://www.journalofangioedema.com/pub/IssuePDFs/Shapiro.pdf.
32. Lang D.M., Aberer W., Bernstein J., Chng H.H., Grumach A.S., Hide M., et al. International consensus on hereditary and acquired angioedema. Ann Allergy Asthma Immunol 2012, 109:395-402.
33. Craig T., Riedl M., Dykewicz M.S., Gower R.G., Baker J., Edelman F.J., et al. When is prophylaxis for hereditary angioedema necessary?. Ann Allergy Asthma Immunol 2009, 102:366-372.
34. Bowen T., Cicardi M., Bork K., Zuraw B., Frank M., Ritchie B., et al. Hereditary angioedema: a current state-of-the-art review, VII: Canadian Hungarian 2007 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary Angioedema. Ann Allergy Asthma Immunol 2008, 100(Suppl 2):S30-40.
35. Zuraw B.L., Banerji A., Bernstein J.A., Busse P.J., Christiansen S.C., Davis-Lorton M., et al. US Hereditary Angioedema Association Medical Advisory Board 2013 recommendations for the management of hereditary angioedema due to C1 inhibitor deficiency. JAllergy Clin Immunol Pract 2013, 1:458-467.