The burden of illness in patients with hereditary angioedema

Annals of Allergy, Asthma and Immunology

Volumn 111, Issue 5, 2013, Pages 329-336

  Banerji, Aleena ^a  

^a MASSACHUSETTS GENERAL HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADRENALIN; ANDROGEN; ANTIDEPRESSANT AGENT; ANTIEMETIC AGENT; ANTIHISTAMINIC AGENT; COMPLEMENT COMPONENT C1S INHIBITOR; COMPLEMENT COMPONENT C4; CORTICOSTEROID; DANAZOL; ECALLANTIDE; FRESH FROZEN PLASMA; ICATIBANT; NARCOTIC ANALGESIC AGENT; PSYCHOTROPIC AGENT;

ADL DISABILITY; ANAPHYLAXIS; ANGIONEUROTIC EDEMA; ANXIETY; DELAYED DIAGNOSIS; DEPRESSION; DIAGNOSTIC ERROR; DIARRHEA; DIZZINESS; DRUG MEGADOSE; DRUG SELF ADMINISTRATION; FAMILY HISTORY; FEVER; GENETIC SCREENING; HEADACHE; HEALTH CARE COST; HOSPITALIZATION; HUMAN; HYPERTENSION; INJECTION SITE REACTION; LIVER ADENOMA; MENSTRUAL IRREGULARITY; NOSE OBSTRUCTION; PRIORITY JOURNAL; PRURITUS; QUALITY OF LIFE; RASH; REVIEW; SIDE EFFECT; UNNECESSARY PROCEDURE; VIRILIZATION; WEIGHT GAIN; WORK DISABILITY;

ANGIOEDEMAS, HEREDITARY; COMPLEMENT C1 INACTIVATOR PROTEINS; COST OF ILLNESS; FACTOR XII; HUMANS; QUALITY OF LIFE;

EID: 84885958287     PISSN: 10811206     EISSN: 15344436     Source Type: Journal    
DOI: 10.1016/j.anai.2013.08.019     Document Type: Review

References (70)

1. Orphanet. Hereditary angioedema. Available at: http://www.orpha.net/ consor/cgi-bin/OC-Exp.php?lng=EN&Expert=91378. Accessed October 17, 2012.
2. A. Bygum Hereditary angio-oedema in Denmark: a nationwide survey Br J Dermatol 161 2009 1153 1158
3. A. Agostoni, E. Aygoren-Pursun, and K.E. Binkley Hereditary and acquired angioedema: problems and progress: proceedings of the third C1 esterase inhibitor deficiency workshop and beyond J Allergy Clin Immunol 114 2004 S51 131
4. U.C. Nzeako, E. Frigas, and W.J. Tremaine Hereditary angioedema: a broad review for clinicians Arch Intern Med 161 2001 2417 2429
5. M.D. Zilberberg, B.H. Nathanson, T. Jacobsen, and G. Tillotson Descriptive epidemiology of hereditary angioedema hospitalizations in the United States, 2004-2007 Allergy Asthma Proc 32 2011 248 254
6. A.E. Prada, K. Zahedi, and A.E. Davis III Regulation of C1 inhibitor synthesis Immunobiology 199 1998 377 388
7. E. Pappalardo, M. Cicardi, and C. Duponchel Frequent de novo mutations and exon deletions in the C1inhibitor gene of patients with angioedema J Allergy Clin Immunol 106 2000 1147 1154
8. B.L. Zuraw, K. Bork, and K.E. Binkley Hereditary angioedema with normal C1 inhibitor function: Consensus of an international expert panel Allergy Asthma Proc 2012
9. A. Kaplan Type III hereditary angioedema: defined, but not understood Ann Allergy Asthma Immunol 109 2012 153 154
10. K. Bork Diagnosis and treatment of hereditary angioedema with normal C1 inhibitor Allergy Asthma Clin Immunol 6 2010 15
11. L. Bouillet Hereditary angioedema in women Allergy Asthma Clin Immunol 6 2010 17
12. K. Bork, G. Meng, P. Staubach, and J. Hardt Hereditary angioedema: new findings concerning symptoms, affected organs, and course Am J Med 119 2006 267 274
13. K. Bork, J. Hardt, K.H. Schicketanz, and N. Ressel Clinical studies of sudden upper airway obstruction in patients with hereditary angioedema due to C1 esterase inhibitor deficiency Arch Intern Med 163 2003 1229 1235
14. A.K. Bewtra, R.J. Levy, K.W. Jacobson, R.L. Wasserman, T. Machnig, and T.J. Craig C1-inhibitor therapy for hereditary angioedema attacks: Prospective patient assessments of health-related quality of life Allergy Asthma Proc 33 2012 427 431
15. M.L. Lunn, C.B. Santos, and T.J. Craig Is there a need for clinical guidelines in the United States for the diagnosis of hereditary angioedema and the screening of family members of affected patients? Ann Allergy Asthma Immunol 104 2010 211 214
16. O. Roche, A. Blanch, T. Caballero, N. Sastre, D. Callejo, and M. Lopez-Trascasa Hereditary angioedema due to C1 inhibitor deficiency: patient registry and approach to the prevalence in Spain Ann Allergy Asthma Immunol 94 2005 498 503
17. B.L. Zuraw Clinical practice. Hereditary angioedema N Engl J Med 359 2008 1027 1036
18. H. Longhurst, and M. Cicardi Hereditary angio-oedema Lancet 379 2012 474 481
19. W.R. Lumry, A.J. Castaldo, M.K. Vernon, M.B. Blaustein, D.A. Wilson, and P.T. Horn The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression Allergy Asthma Proc 31 2010 407 414
20. Shands at the University of Florida. Formulary update. Available at: http://gme.med.ufl.edu/files/2012/04/Drug-Therapy-bulletin-0412.pdf. Accessed September 9, 2013.
21. Three new drugs for hereditary angioedema Med Lett Drugs Ther 52 2010 66 67
22. K. Bork, P. Staubach, A.J. Eckardt, and J. Hardt Symptoms, course, and complications of abdominal attacks in hereditary angioedema due to C1 inhibitor deficiency Am J Gastroenterol 101 2006 619 627
23. S.W. Huang Results of an on-line survey of patients with hereditary angioedema Allergy Asthma Proc 25 2004 127 131
24. A. Bygum, E. Aygoren-Pursun, and T. Caballero The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe): background and methodology BMC Dermatol 12 2012 4
25. D.A. Wilson, K. Bork, E.P. Shea, A.M. Rentz, M.B. Blaustein, and W.E. Pullman Economic costs associated with acute attacks and long-term management of hereditary angioedema Ann Allergy Asthma Immunol 104 2010 314 320
26. N. Prior, E. Remor, and C. Gomez-Traseira Development of a disease-specific quality of life questionnaire for adult patients with hereditary angioedema due to C1 inhibitor deficiency (HAE-QOL): Spanish multi-centre research project Health Qual Life Outcomes 10 2012 82
27. M.D. Zilberberg, T. Jacobsen, and G. Tillotson The burden of hospitalizations and emergency department visits with hereditary angioedema and angioedema in the United States, 2007 Allergy Asthma Proc 31 2010 511 519
28. K. Bork, J. Hardt, and G. Witzke Fatal laryngeal attacks and mortality in hereditary angioedema due to C1-INH deficiency J Allergy Clin Immunol 130 2012 692 697
29. T. Bowen, M. Cicardi, and H. Farkas Canadian 2003 international consensus algorithm for the diagnosis, therapy, and management of hereditary angioedema J Allergy Clin Immunol 114 2004 629 637
30. T. Bowen, M. Cicardi, and H. Farkas 2010 International consensus algorithm for the diagnosis, therapy and management of hereditary angioedema Allergy Asthma Clin Immunol 6 2010 24
31. J. Jacobs Recurrent attacks of hereditary angioedema: a case of delayed diagnosis Allergy Asthma Proc 32 suppl 1 2011 S23 S26
32. J. Winnewisser, M. Rossi, P. Spath, and H. Burgi Type I hereditary angio-oedema. Variability of clinical presentation and course within two large kindreds J Intern Med 241 1997 39 46
33. J.G. Kemp, and T.J. Craig Variability of prodromal signs and symptoms associated with hereditary angioedema attacks: a literature review Allergy Asthma Proc 30 2009 493 499
34. E.W. Nielsen, J.T. Gran, B. Straume, O.J. Mellbye, H.T. Johansen, and T.E. Mollnes Hereditary angio-oedema: new clinical observations and autoimmune screening, complement and kallikrein-kinin analyses J Intern Med 239 1996 119 130
35. K. Bork, B. Fischer, and G. Dewald Recurrent episodes of skin angioedema and severe attacks of abdominal pain induced by oral contraceptives or hormone replacement therapy Am J Med 114 2003 294 298
36. M. Cicardi, and A. Agostoni Hereditary angioedema N Engl J Med 334 1996 1666 1667
37. T. Caballero, H. Farkas, and L. Bouillet International consensus and practical guidelines on the gynecologic and obstetric management of female patients with hereditary angioedema caused by C1 inhibitor deficiency J Allergy Clin Immunol 129 2012 308 320
38. H.J. Longhurst, H. Farkas, and T. Craig HAE international home therapy consensus document Allergy Asthma Clin Immunol 6 2010 22
39. M.J. Prematta, A.K. Bewtra, and R.J. Levy Per-attack reporting of prodromal symptoms concurrent with C1-inhibitor treatment of hereditary angioedema attacks Adv Ther 29 2012 913 922
40. N. Javaud, A. Karami, and J. Stirnemann Bradykinin-mediated angioedema: factors prompting ED visits Am J Emerg Med 31 2013 124 129
41. C.V. McMillan, J. Speight, A. Relan, L. Bellizzi, G. Haase, and M. Cicardi Content validity of visual analog scales to assess symptom severity of acute angioedema attacks in adults with hereditary angioedema: an interview study Patient 5 2012 113 126
42. K. Bork, K. Siedlecki, S. Bosch, R.E. Schopf, and W. Kreuz Asphyxiation by laryngeal edema in patients with hereditary angioedema Mayo Clin Proc 75 2000 349 354
43. T.J. Craig Appraisal of danazol prophylaxis for hereditary angioedema Allergy Asthma Proc 29 2008 225 231
44. M.A. Gupta, and A.K. Gupta Psychiatric and psychological co-morbidity in patients with dermatologic disorders: epidemiology and management Am J Clin Dermatol 4 2003 833 842
45. R.G. Gower, P.J. Busse, and E. Aygoren-Pursun Hereditary angioedema caused by C1-esterase inhibitor deficiency: A literature-based analysis and clinical commentary on prophylaxis treatment strategies World Allergy Organ J 4 2011 S9 S21
46. S. Luz, J.A. da Silva, F. Barbosa, A.S. Santos, M.B. Ferreira, and M.P. Barbosa Quality of life evaluation in patients with hereditary angioedema Rev Port Imunoalergol 19 2011 143 149
47. S.I. Krassilnikova, Y.S. Nikiforov, and T.J. Craig Treatment of hereditary angioedema: current perspectives Recent Pat Inflamm Allergy Drug Discov 2 2008 166 174
48. M. Prematta, J.G. Gibbs, E.L. Pratt, T.R. Stoughton, and T.J. Craig Fresh frozen plasma for the treatment of hereditary angioedema Ann Allergy Asthma Immunol 98 2007 383 388
49. M. Cicardi, R.J. Levy, and D.L. McNeil Ecallantide for the treatment of acute attacks in hereditary angioedema N Engl J Med 363 2010 523 531
50. R.J. Levy, W.R. Lumry, and D.L. McNeil EDEMA4: a phase 3, double-blind study of subcutaneous ecallantide treatment for acute attacks of hereditary angioedema Ann Allergy Asthma Immunol 104 2010 523 529
51. M. Lunn, and E. Banta Ecallantide for the treatment of hereditary angioedema in adults Clin Med Insights Cardiol 5 2011 49 54
52. M. Cicardi, A. Banerji, and F. Bracho Icatibant, a new bradykinin-receptor antagonist, in hereditary angioedema N Engl J Med 363 2010 532 541
53. W.R. Lumry, H.H. Li, and R.J. Levy Randomized placebo-controlled trial of the bradykinin B(2) receptor antagonist icatibant for the treatment of acute attacks of hereditary angioedema: the FAST-3 trial Ann Allergy Asthma Immunol 107 2011 529 537
54. B. Floccard, E. Hautin, L. Bouillet, B. Coppere, and B. Allaouchiche An evidence-based review of the potential role of icatibant in the treatment of acute attacks in hereditary angioedema type I and II Core Evid 7 2012 105 114
55. K. Bork, A. Bygum, and J. Hardt Benefits and risks of danazol in hereditary angioedema: a long-term survey of 118 patients Ann Allergy Asthma Immunol 100 2008 153 161
56. L.V. Buyantseva, N. Sardana, and T.J. Craig Update on treatment of hereditary angioedema Asian Pac J Allergy Immunol 30 2012 89 98
57. B.L. Zuraw, P.J. Busse, and M. White Nanofiltered C1 inhibitor concentrate for treatment of hereditary angioedema N Engl J Med 363 2010 513 522
58. B.L. Zuraw, and I. Kalfus Safety and efficacy of prophylactic nanofiltered C1-inhibitor in hereditary angioedema Am J Med 125 2012 938.e1-938.e7
59. T.J. Craig, R.J. Levy, and R.L. Wasserman Efficacy of human C1 esterase inhibitor concentrate compared with placebo in acute hereditary angioedema attacks J Allergy Clin Immunol 124 2009 801 808
60. K. Bork, G. Meng, P. Staubach, and J. Hardt Treatment with C1 inhibitor concentrate in abdominal pain attacks of patients with hereditary angioedema Transfusion 45 2005 1774 1784
61. T.J. Craig, A.K. Bewtra, and S.L. Bahna C1 esterase inhibitor concentrate in 1085 Hereditary Angioedema attacks - final results of the I.M.P.A.C.T.2 study Allergy 66 2011 1604 1611
62. M. Levi, G. Choi, C. Picavet, and C.E. Hack Self-administration of C1-inhibitor concentrate in patients with hereditary or acquired angioedema caused by C1-inhibitor deficiency J Allergy Clin Immunol 117 2006 904 908
63. I. Boccon-Gibod, and L. Bouillet Safety and efficacy of icatibant self-administration for acute hereditary angioedema Clin Exp Immunol 168 2012 303 307
64. I. Boccon-Gibod, C. Massot, and L. Bouillet Clinical experience with icatibant self-administration for patients with hereditary angioedema Eur J Allergy Clin Immunol 66 2011 425 426
65. W. Kreuz, E. Rusicke, I. Martinez-Saguer, E. Aygoren-Pursun, C. Heller, and T. Klingebiel Home therapy with intravenous human C1-inhibitor in children and adolescents with hereditary angioedema Transfusion 52 2012 100 107
66. W. Kreuz, I. Martinez-Saguer, E. Aygoren-Pursun, E. Rusicke, C. Heller, and T. Klingebiel C1-inhibitor concentrate for individual replacement therapy in patients with severe hereditary angioedema refractory to danazol prophylaxis Transfusion 49 2009 1987 1995
67. M. Maurer, W. Aberer, and L. Bouillet Hereditary angioedema attacks resolve faster and are shorter after early icatibant treatment PLoS One 8 2013 e53773
68. H.J. Longhurst, S. Carr, and K. Khair C1-inhibitor concentrate home therapy for hereditary angioedema: a viable, effective treatment option Clin Exp Immunol 147 2007 11 17
69. T. Jaiganesh, C. Hughan, A. Webster, and C. Bethune Hereditary angioedema: a survey of UK emergency departments and recommendations for management Eur J Emerg Med 19 2012 271 274
70. L. Mallbris, P. Nordenfelt, J. Bjorkander, A. Lindfors, S. Werner, and C.F. Wahlgren The establishment and utility of Sweha-Reg: a Swedish population-based registry to understand hereditary angioedema BMC Dermatol 7 2007 6