Self-Management Plans in Patients with Hereditary Angioedema: Strategies, Outcomes and Integration into Clinical Care

References

• Wagner EH, Austin BT, Davis C, et al. Improving chronic illness care: translating evidence into action. Health Aff (Millwood). 2001;20(6):64–78. doi:10.1377/hlthaff.20.6.6411816692
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence. Medicines optimisation.The Safe and Effective Use of Medicines to Enable the Best Possible Outcomes. 3 2015 NICE Guideline 5.
   Google Scholar
• Cicardi M, Aberer W, Banerji A, et al. Classification, diagnosis, and approach to treatment for angioedema: consensus report from the hereditary angioedema international working group. Allergy. 2014;69(5):602–616. doi:10.1111/all.1238024673465
   PubMed Web of Science ®Google Scholar
• Ponard D, Gaboriaud C, Charignon C, et al. SERPING1 mutation update: mutation spectrum and C1 inhibitor phenotypes. Hum Mutat. 2020;41(1):38–57. doi:10.1002/humu.2391731517426
   PubMed Web of Science ®Google Scholar
• Zanichelli A, Longhurst H, Maurer M, et al. Misdiagnosis trends in patients with hereditary angioedema from the real-world clinical setting. Ann Allergy Asthma Immunol. 2016;117(4):394398. doi:10.1016/j.anai.2016.08.014
   Web of Science ®Google Scholar
• Bruce L. Hereditary angioedema with normal C1 inhibitor: four types and counting. J Allergy Clin Immun. 2018;141(3):884–885. doi:10.1016/j.jaci.2018.01.01529410040
   PubMed Web of Science ®Google Scholar
• Bork K, Wulff K, Hardt J, et al. Hereditary angioedema caused by missense mutations in the factor XII gene: clinical features, trigger factors, and therapy. J Allergy Clin Immunol. 2009;124(1):129–134. doi:10.1016/j.jaci.2009.03.03819477491
   PubMed Web of Science ®Google Scholar
• Bork K, Wulff K, Steinmeuller-Magin L, et al. Hereditary angioedema with a mutation in the plasminogen gene. Allergy. 2018;73(2):442–450. doi:10.1111/all.1327028795768
   PubMed Web of Science ®Google Scholar
• Germenis A, Loules G, Zamanakou M, et al. On the pathogenicity of the plasminogen K330E mutation for hereditary angioedema. Allergy. 2018;73(8):1751–1753. doi:10.1111/all.1332430009523
   PubMed Web of Science ®Google Scholar
• Bork K, Wulff K, Rossmann H, et al. Hereditary angioedema cosegregating with a novel kininogen 1 gene mutation changing the N-terminal cleavage site of bradykinin. Allergy. 2019;74(12):2479. doi:10.1111/all.1386931087670
   PubMed Web of Science ®Google Scholar
• Zuraw BL. Clinical practice. Hereditary angioedema. N Engl J Med. 2008;359(10):1027–1036. doi:10.1056/NEJMcp080397718768946
   PubMed Web of Science ®Google Scholar
• Davis AE. Mechanism of angioedema in first complement component inhibitor deficiency. Immunol Allergy Clin North Am. 2006;26(4):633–651. doi:10.1016/j.iac.2006.08.00317085282
   PubMed Web of Science ®Google Scholar
• Craig T, Aygören-Pürsün E, Bork K. WAO guidelines for the management of hereditary angioedema. WAO J. 2012;5(12):182–199. doi:10.1097/WOX.0b013e318279affa
   Google Scholar
• Germenis AE, Margaglione M, Pesquero JB, et al. International consensus on the use of genetics in the management of hereditary angioedema. J Allergy Clin Immunol Pract. 2019;8:901–911. doi:10.1016/j.jaip.2019.10.00431669336
   PubMed Web of Science ®Google Scholar
• Bygum A. Hereditary angio-oedema in Denmark: a nationwide survey. Brit J Dermatol. 2009;161(5):1153–1158. doi:10.1111/j.1365-2133.2009.09366.x19709101
   PubMed Web of Science ®Google Scholar
• Bork K, Meng G, Staubach P, Hardt J. Hereditary angioedema: new findings concerning symptoms, affected organs, and course. Am J Med. 2006;119(3):267–274. doi:10.1016/j.amjmed.2005.09.06416490473
   PubMed Web of Science ®Google Scholar
• Bork K, Siedlecki K, Bosch S, et al. Asphyxiation by laryngeal edema in patients with hereditary angioedema. Mayo Clin Proc. 2000;75(4):349–354. doi:10.4065/75.4.34910761488
   PubMed Web of Science ®Google Scholar
• Starr JC, Brasher GW, Rao A, Posey D. Erythema marginatum and hereditary angioedema. South Med J. 2004;97(10):948–950. doi:10.1097/01.SMJ.0000140850.22535.FA15558919
   PubMed Web of Science ®Google Scholar
• Farkas H, Harmat G, Fáy A, et al. Erythema marginatum preceding an acute oedematous attack of hereditary angioneurotic oedema. Acta Derm Venereol. 2001;81(5):376–377. doi:10.1080/00015550131714018811800154
   PubMed Web of Science ®Google Scholar
• Maurer M, Magerl M, Ansotegui I, et al. The international WAO/EAACI guideline for the management of hereditary angioedema – the 2017 revision and update. World Allergy Organ J. 2018;11(1):1. doi:10.1186/s40413-017-0180-129308115
   PubMed Web of Science ®Google Scholar
• Lumry WR, Castaldo AJ, Vernon MK, Blaustein MB, Wilson DA, Horn PT. The humanistic burden of hereditary angioedema: impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc. 2010;31(5):407–414. doi:10.2500/aap.2010.31.339420929608
   PubMed Web of Science ®Google Scholar
• Craig TJ, Rojavin MA, Machnig T, Keinecke H-O, Bernstein JA. Effect of time to treatment on response to C1 esterase inhibitor concentrate for hereditary angioedema attacks. Ann Allergy Asthma Immunol. 2013;111(3):211–215. doi:10.1016/j.anai.2013.06.02123987198
   PubMed Web of Science ®Google Scholar
• Cicardi M, Banerji A, Bracho F, et al. Icatibant, a new bradykinin-receptor antagonist, in hereditary angioedema. N Engl J Med. 2010;363(6):532–541. doi:10.1056/NEJMoa090639320818888
   PubMed Web of Science ®Google Scholar
• Banerji A. The burden of illness in patients with hereditary angioedema. Ann Allergy Asthma Immunol. 2013;111(5):329–336. doi:10.1016/j.anai.2013.08.01924125136
   PubMed Web of Science ®Google Scholar
• Hernandez Fernandez de Rojas D, Ibanez E, Longhurst H, et al. Treatment of HAE attacks in the icatibant outcome survey: an analysis of icatibant self-administration versus administration by health care professionals. Int Arch Allergy Immunol. 2015;167(1):2128. doi:10.1159/000430864
   Web of Science ®Google Scholar
• Bygum A, Andersen KE, Mikkelsen CS. Self-administration of intravenous C1-inhibitor therapy for hereditary angioedema and associated quality of life benefits. Eur J Dermatol. 2009;19(2):147–151. doi:10.1684/ejd.2008.060319264579
   PubMed Web of Science ®Google Scholar
• Firszt R, Duffey H. Management of acute attacks of hereditary angioedema: role of ecallantide. J Blood Med. 2015;6:115–119. doi:10.2147/JBM.S6682525931832
   PubMedGoogle Scholar
• Craig TJ, Li HH, Riedl M, et al. Characterization of anaphylaxis after ecallantide treatment of hereditary angioedema attacks. J Allergy Clin Immunol Pract. 2015;3(2):206–212. doi:10.1016/j.jaip.2014.09.00125609335
   PubMed Web of Science ®Google Scholar
• Zuraw BL, Davis DK, Castaldo AJ, Christiansen SC. Tolerability and effectiveness of 17-α-alkylated androgen therapy for hereditary angioedema: a re-examination. J Allergy Clin Immunol Pract. 2016;4(5):948–955. doi:10.1016/j.jaip.2016.03.02427329469
   PubMed Web of Science ®Google Scholar
• Bork K, Bygum A, Hardt J. Benefits and risks of danazol in hereditary angioedema: a long-term survey of 118 patients. Annals of Allergy, Asthma & Immunology. 2008;100(2):153–161. doi:10.1016/S1081-1206(10)60424-3
   PubMed Web of Science ®Google Scholar
• Paspe Cruz M. Conestat alfa (ruconest). first recombinant C1 esterase inhibitor for the treatment of acute attacks in patients with hereditary angioedema. Pharm Ther. 2015;40(2):109–111.
   Google Scholar
• Craig T, Longhurst H, Cicardi M, Zuraw B. Safety and efficacy of long-term subcutaneous C1-inhibitor replacement therapy for prevention of hereditary angioedema attacks. Ann Allergy Asthma Immunol. 2018;121(5):S34. doi:10.1016/j.anai.2018.09.107
   Web of Science ®Google Scholar
• Banerji A, Riedl MA, Bernstein JA, et al. Effect of lanadelumab compared with placebo on prevention of hereditary angioedema attacks. JAMA. 2018;320(20):2108. doi:10.1001/jama.2018.1677330480729
   PubMed Web of Science ®Google Scholar
• Aygören-Pürsün E, Bygum A, Grivcheva-Panovska V, et al. Oral plasma kallikrein inhibitor for prophylaxis in hereditary angioedema. N Engl J Med. 2018;379(4):352–362. doi:10.1056/NEJMoa171699530044938
   PubMed Web of Science ®Google Scholar
• Grady PA, Gough L. Self-management: a comprehensive approach to management of chronic conditions. Am J Public Health. 2014;104(8):e25–e31. doi:10.2105/AJPH.2014.30204124922170
   PubMed Web of Science ®Google Scholar
• Lorig KR, Mazonson PD, Holman HR. Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis Rheum. 1993;36(4):439–446. doi:10.1002/art.17803604038457219
   PubMed Web of Science ®Google Scholar
• www.allergy.org.au › anaphylaxis › ascia-action-plan-for-anaphylaxis
   Google Scholar
• Dowrick C, Dixon-Woods M, Holman H, Weinman J. What is chronic illness? Chronic Illn. 2005;1(1):1–6. doi:10.1177/1742395305001001090117136923
   PubMedGoogle Scholar
• Gibson PG, Powell H, Coughlan J, et al. Self-management education and regular practitioner review for adults with asthma. Cochrane Database Syst Rev. 2003;1:CD001117.
   PubMedGoogle Scholar
• Betschel S, Badiou J, Binkley K, et al. The international/Canadian hereditary angioedema guideline. Allergy Asthma Clin Immunol. 2019;15(1):72. doi:10.1186/s13223-019-0376-831788005
   PubMed Web of Science ®Google Scholar