181
Views
0
CrossRef citations to date
0
Altmetric
ORIGINAL RESEARCH

Recommendations for the Implementation of the Self-Administration of Alpha-1 Antitrypsin

, ORCID Icon, ORCID Icon, , , , , , ORCID Icon, ORCID Icon, , , ORCID Icon, , , ORCID Icon, , ORCID Icon, , , , , , & ORCID Icon show all
Pages 1691-1700 | Received 18 May 2023, Accepted 24 Jul 2023, Published online: 04 Aug 2023

References

  • Edgar RG, Patel M, Bayliss S, Crossley D, Sapey E, Turner AM. Treatment of lung disease in alpha-1 antitrypsin deficiency: a systematic review. Int J Chron Obstruct Pulmon Dis. 2017;12:1295–1308. doi:10.2147/COPD.S130440
  • Miravitlles M, Dirksen A, Ferrarotti I, et al. European Respiratory Society statement: diagnosis and treatment of pulmonary disease in α1-antitrypsin deficiency. Eur Respir J. 2017;50(5):1700610. doi:10.1183/13993003.00610-2017
  • Torres-Durán M, López-Campos JL, Rodríguez-Hermosa JL, et al. Demographic and clinical characteristics of patients with alpha-1 antitrypsin deficiency genotypes PI*ZZ and PI*SZ in the Spanish registry of EARCO. ERJ Open Res. 2022;8(3):00213–2022. doi:10.1183/23120541.00213-2022
  • Horváth I, Canotilho M, Chlumský J, et al. Diagnosis and management of α(1)-antitrypsin deficiency in Europe: an expert survey. ERJ Open Res. 2019;5(1):00171–2018. doi:10.1183/23120541.00171-2018
  • Sandhaus RA, Strange C, Zanichelli A, Skålvoll K, Koczulla AR, Stockley RA. Improving the lives of patients with alpha-1 antitrypsin deficiency. Int J Chron Obstruct Pulmon Dis. 2020;15:3313–3322. doi:10.2147/COPD.S276773
  • Annunziata A, Lanza M, Coppola A, Andreozzi P, Spinelli S, Fiorentino G. Alpha-1 antitrypsin deficiency: home therapy. Front Pharmacol. 2021;12:575402. doi:10.3389/fphar.2021.575402
  • Barrecheguren M, O’Hara K, Wilkens M, et al. Research priorities in α(1)-antitrypsin deficiency: results of a patients’ and healthcare providers’ international survey from the EARCO Clinical Research Collaboration. ERJ Open Res. 2020;6(4):00523–2020. doi:10.1183/23120541.00523-2020
  • Schrijvers LH, Beijlevelt-van der Zande M, Peters M, Schuurmans MJ, Fischer K. Learning intravenous infusion in haemophilia: experience from the Netherlands. Haemophilia. 2012;18(4):516–520. doi:10.1111/j.1365-2516.2012.02752.x
  • Khair K, Meerabeau L, Gibson F. Self-management and skills acquisition in boys with haemophilia. Health Expect. 2015;18(5):1105–1113. doi:10.1111/hex.12083
  • Longhurst HJ, Carr S, Khair K. C1-inhibitor concentrate home therapy for hereditary angioedema: a viable, effective treatment option. Clin Exp Immunol. 2007;147(1):11–17. doi:10.1111/j.1365-2249.2006.03256.x
  • Craig TJ. Recent advances in hereditary angioedema self-administration treatment: summary of an international hereditary angioedema expert meeting. Int Arch Allergy Immunol. 2013;161(suppl 1):1–2. doi:10.1159/000351228
  • Aberer W, Maurer M, Reshef A, et al. Open-label, multicenter study of self-administered icatibant for attacks of hereditary angioedema. Allergy. 2014;69(3):305–314. doi:10.1111/all.12303
  • European Medicines Agency. Respreeza. Summary of product characteristics; 2022. Available form: https://www.ema.europa.eu/en/documents/product-information/respreeza-epar-product-information_en.pdf. Accessed July 31, 2023.
  • Boyd B. Alpha-1 antitrypsin therapy: a satisfaction survey of individuals self-administering. A46 topics in alpha-1 antitrypsin deficiency. Am J Respir Crit Care Med. 2018;197:A1758.
  • Herth FJF, Sandhaus RA, Turner AM, Sucena M, Welte T, Greulich T. Alpha-1 antitrypsin therapy in patients with alpha-1 antitrypsin deficiency: perspectives from a registry study and practical considerations for self-administration during the COVID-19 pandemic. Int J Chron Obstruct Pulmon Dis. 2021;16:2983–2996. doi:10.2147/COPD.S325211
  • Jones J, Hunter D. Consensus methods for medical and health services research. BMJ. 1995;311(7001):376–380. doi:10.1136/bmj.311.7001.376
  • Casas F, Blanco I, Martínez MT, et al. Indications for active case searches and intravenous alpha-1 antitrypsin treatment for patients with alpha-1 antitrypsin deficiency chronic pulmonary obstructive disease: an update. Arch Bronconeumol. 2015;51(4):185–192. doi:10.1016/j.arbres.2014.05.008
  • Tonna A, Anthony G, Tonna I, et al. Home self-administration of intravenous antibiotics as part of an outpatient parenteral antibiotic therapy service: a qualitative study of the perspectives of patients who do not self-administer. BMJ Open. 2019;9(1):e027475. doi:10.1136/bmjopen-2018-027475
  • Zanichelli A, Azin GM, Cristina F, Vacchini R, Caballero T. Safety, effectiveness, and impact on quality of life of self-administration with plasma-derived nanofiltered C1 inhibitor (Berinert®) in patients with hereditary angioedema: the SABHA study. Orphanet J Rare Dis. 2018;13(1):51. doi:10.1186/s13023-018-0797-3
  • 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.2008.0603
  • Colello J, Ptasinski A, Zhan X, Kaur S, Craig T. Assessment of patient perspectives and barriers to self-infusion of augmentation therapy for alpha-1 antitrypsin deficiency during the COVID-19 pandemic. Pulm Ther. 2022;8(1):95–103. doi:10.1007/s41030-022-00182-z
  • Richardson SJ, Brooks HL, Bramley G, Coleman JJ. Evaluating the effectiveness of self-administration of medication (SAM) schemes in the hospital setting: a systematic review of the literature. PLoS One. 2014;9(12):e113912. doi:10.1371/journal.pone.0113912
  • Deeks PA, Byatt K. Are patients who self-administer their medicines in hospital more satisfied with their care? J Adv Nurs. 2000;31(2):395–400. doi:10.1046/j.1365-2648.2000.01286.x
  • Eaves K, Thornton J, Chapman AL. Patient retention of training in self-administration of intravenous antibiotic therapy in an outpatient parenteral antibiotic therapy service. J Clin Nurs. 2014;23(9–10):1318–1322. doi:10.1111/jocn.12376
  • CSL Behring. Respreeza® self-administration and learning program (AmAREtTI Study) (AmAREtTI); 2022. Available form: https://clinicaltrials.gov/ct2/show/NCT04262284. Accessed July 31, 2023.