Improving Care in Eosinophil-Associated Diseases: A Charter.

Eosinophil-associated diseases Eosinophilic immune dysfunction (EID) Healthcare professional (HCP) education Multidisciplinary teams (MDTs) Patient education Patient rights Timely diagnosis

Journal

Advances in therapy
ISSN: 1865-8652
Titre abrégé: Adv Ther
Pays: United States
ID NLM: 8611864

Informations de publication

Date de publication:
06 2022
Historique:
received: 16 11 2021
accepted: 02 03 2022
pubmed: 1 5 2022
medline: 25 5 2022
entrez: 30 4 2022
Statut: ppublish

Résumé

Eosinophil-associated diseases (EADs) are a range of heterogeneous conditions in which eosinophils are believed to play a critical pathological role. EADs include common illnesses such as eosinophilic asthma and chronic rhinosinusitis and rare conditions such as hypereosinophilic syndromes (HES) and eosinophilic gastrointestinal disorders (EGIDs). EADs are associated with substantial burdens for the patient, including chronic, debilitating symptoms, increased financial burden, decreased health-related quality of life, and the need for repeated visits to multiple different healthcare professionals (HCPs), emergency departments, and/or hospitals. Poor EAD recognition by HCPs often contributes to delayed diagnoses, which further delays patient access to appropriate care and effective treatments, contributing to poor health outcomes. The objective of this charter is to outline key patient rights and expectations with respect to the management of their condition(s) and to set forth an ambitious action plan to improve health outcomes for patients with EADs: (1) people with EADs, their caretakers, HCPs, and the public must have greater awareness and education about EADs; (2) people with EADs must receive a timely, accurate diagnosis; (3) all people with EADs must have access to an appropriate multidisciplinary team, when necessary; and (4) people with EADs must have access to safe and effective treatment options without unnecessary regulatory delays. The principles described in this charter demonstrate the core elements of quality care that people with EADs must receive, and they represent clear steps by which to reduce patient and caregiver burden and improve patient outcomes. We urge HCPs, healthcare systems, and policymakers worldwide to swiftly adopt these principles to ensure patients with EADs have an accurate diagnosis in a timely manner and access to high-level care and treatment in an appropriate setting.

Identifiants

pubmed: 35489014
doi: 10.1007/s12325-022-02110-8
pii: 10.1007/s12325-022-02110-8
pmc: PMC9055373
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Pagination

2323-2341

Informations de copyright

© 2022. The Author(s).

Références

Sastre B, Rodrigo-Munoz JM, Garcia-Sanchez DA, Canas JA, Del Pozo V. Eosinophils: old players in a new game. J Investig Allergol Clin Immunol. 2018;28(5):289–304.
pubmed: 30059011 doi: 10.18176/jiaci.0295
Cogan E, Roufosse F. Clinical management of the hypereosinophilic syndromes. Expert Rev Hematol. 2012;5(3):275–89 (quiz 290).
pubmed: 22780208 doi: 10.1586/ehm.12.14
Simon D, Simon H-U. Eosinophils and skin diseases. In: Lee J, Rosenberg H, editors. Eosinophils in health and disease. 1st ed. London: Academic Press; 2012. p. 442–7.
Gonsalves N. Eosinophilic gastrointestinal disorders. Clin Rev Allergy Immunol. 2019;57(2):272–85.
pubmed: 30903439 doi: 10.1007/s12016-019-08732-1
Klion AD, Ackerman SJ, Bochner BS. Contributions of eosinophils to human health and disease. Annu Rev Pathol. 2020;15:179–209.
pubmed: 31977298 pmcid: 7604902 doi: 10.1146/annurev-pathmechdis-012419-032756
Jacobsen EA, Jackson DJ, Heffler E, Mathur SK, Bredenoord AJ, Pavord ID, et al. Eosinophil knockout humans: uncovering the role of eosinophils through eosinophil-directed biological therapies. Annu Rev Immunol. 2021;39:719–57.
pubmed: 33646859 pmcid: 8317994 doi: 10.1146/annurev-immunol-093019-125918
Rodrigo-Munoz JM, Gil-Martinez M, Sastre B, Del Pozo V. Emerging evidence for pleiotropism of eosinophils. Int J Mol Sci. 2021;22(13):7075.
pubmed: 34209213 pmcid: 8269185 doi: 10.3390/ijms22137075
Jackson DJ, Busby J, Pfeffer PE, Menzies-Gow A, Brown T, Gore R, et al. Characterisation of patients with severe asthma in the UK severe asthma registry in the biologic era. Thorax. 2021;76(3):220–7.
pubmed: 33298582 doi: 10.1136/thoraxjnl-2020-215168
Heaney LG, Perez de Llano L, Al-Ahmad M, Backer V, Busby J, Canonica GW, et al. Eosinophilic and noneosinophilic asthma: an expert consensus framework to characterize phenotypes in a global real-life severe asthma cohort. Chest. 2021;160(3):814–30.
pubmed: 33887242 doi: 10.1016/j.chest.2021.04.013
Churg J, Strauss L. Allergic granulomatosis, allergic angiitis, and periarteritis nodosa. Am J Pathol. 1951;27(2):277–301.
pubmed: 14819261 pmcid: 1937314
Noth I, Strek ME, Leff AR. Churg-strauss syndrome. Lancet. 2003;361(9357):587–94.
pubmed: 12598156 doi: 10.1016/S0140-6736(03)12518-4
Hiremath G, Kodroff E, Strobel MJ, Scott M, Book W, Reidy C, et al. Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care. Clin Res Hepatol Gastroenterol. 2018;42(5):483–93.
pubmed: 29615329 pmcid: 6167209 doi: 10.1016/j.clinre.2018.03.003
Bell CF, Blauer-Peterson C, Mao J. Burden of illness and costs associated with eosinophilic granulomatosis with polyangiitis: evidence from a managed care database in the United States. J Manag Care Spec Pharm. 2021;27:1249–59.
pubmed: 34165321
Jakes RW, Kwon N, Nordstrom B, Goulding R, Fahrbach K, Tarpey J, et al. Burden of illness associated with eosinophilic granulomatosis with polyangiitis: a systematic literature review and meta-analysis. Clin Rheumatol. 2021;40:4829–36.
pubmed: 34159493 pmcid: 8599408 doi: 10.1007/s10067-021-05783-8
Chen S, Zhou A, Emmanuel B, Garcia D, Rosta E. Systematic literature review of humanistic and economic burdens of chronic rhinosinusitis with nasal polyposis. Curr Med Res Opin. 2020;36(11):1913–26.
pubmed: 32851882 doi: 10.1080/03007995.2020.1815683
Jensen ET, Aceves SS, Bonis PA, Bray K, Book W, Chehade M, et al. High patient disease burden in a cross-sectional, multicenter contact registry study of eosinophilic gastrointestinal diseases. J Pediatr Gastroenterol Nutr. 2020;71(4):524–9.
pubmed: 32541201 pmcid: 7574400 doi: 10.1097/MPG.0000000000002817
Haughney J, Winders TA, Holmes S, Chanez P, Saul H, Menzies-Gow A, et al. Global quality standard for identification and management of severe asthma. Adv Ther. 2020;37(9):3645–59.
pubmed: 32725419 pmcid: 7444397 doi: 10.1007/s12325-020-01450-7
Bousquet J, Bachert C, Canonica GW, Casale TB, Cruz AA, Lockey RJ, et al. Unmet needs in severe chronic upper airway disease (SCUAD). J Allergy Clin Immunol. 2009;124(3):428–33.
pubmed: 19660803 doi: 10.1016/j.jaci.2009.06.027
Chehade M, Kamboj AP, Atkins D, Gehman LT. Diagnostic delay in patients with eosinophilic gastritis and/or duodenitis: A population-based study. J Allergy Clin Immunol Pract. 2021;9(5):2050-2059 e2020.
pubmed: 33440255 doi: 10.1016/j.jaip.2020.12.054
Groh M, Pagnoux C, Baldini C, Bel E, Bottero P, Cottin V, et al. Eosinophilic granulomatosis with polyangiitis (Churg–Strauss) (EGPA) consensus task force recommendations for evaluation and management. Eur J Intern Med. 2015;26(7):545–53.
pubmed: 25971154 doi: 10.1016/j.ejim.2015.04.022
Steinbach EC, Hernandez M, Dellon ES. Eosinophilic esophagitis and the eosinophilic gastrointestinal diseases: approach to diagnosis and management. J Allergy Clin Immunol Pract. 2018;6(5):1483–95.
pubmed: 30201096 pmcid: 6134874 doi: 10.1016/j.jaip.2018.06.012
Hannane A, Misane L, Devouassoux G, Colin C, Letrilliart L. Asthma patients’ perception on their care pathway: a qualitative study. NPJ Prim Care Respir Med. 2019;29(1):9.
pubmed: 30940806 pmcid: 6445145 doi: 10.1038/s41533-019-0121-2
Price DB, Trudo F, Voorham J, Xu X, Kerkhof M, Ling Zhi Jie J, et al. Adverse outcomes from initiation of systemic corticosteroids for asthma: long-term observational study. J Asthma Allergy. 2018;11:193–204.
pubmed: 30214247 pmcid: 6121746 doi: 10.2147/JAA.S176026
Al Efraij K, Johnson KM, Wiebe D, Sadatsafavi M, Fitz Gerald JM. A systematic review of the adverse events and economic impact associated with oral corticosteroids in asthma. J Asthma. 2019;56(12):1334–46.
pubmed: 30513226 doi: 10.1080/02770903.2018.1539100
Voorham J, Xu X, Price DB, Golam S, Davis J, Zhi Jie Ling J, et al. Healthcare resource utilization and costs associated with incremental systemic corticosteroid exposure in asthma. Allergy. 2019;74(2):273–83.
pubmed: 29987879 doi: 10.1111/all.13556
Bleecker ER, Menzies-Gow AN, Price DB, Bourdin A, Sweet S, Martin AL, et al. Systematic literature review of systemic corticosteroid use for asthma management. Am J Respir Crit Care Med. 2020;201(3):276–93.
pubmed: 31525297 pmcid: 6999108 doi: 10.1164/rccm.201904-0903SO
Cataldo D, Louis R, Michils A, Peché R, Pilette C, Schleich F, et al. Severe asthma: oral corticosteroid alternatives and the need for optimal referral pathways. J Asthma. 2021;58(4):448–58.
pubmed: 31928102 doi: 10.1080/02770903.2019.1705335
Menzies-Gow A, Canonica GW, Winders TA, Correia de Sousa J, Upham JW, Fink-Wagner AH. A charter to improve patient care in severe asthma. Adv Ther. 2018;35(10):1485–96.
pubmed: 30182174 pmcid: 6182619 doi: 10.1007/s12325-018-0777-y
Global Initiative for Asthma (GINA). Global strategy for asthma management and prevention, 2021 report; 2021. https://ginasthma.org/wp-content/uploads/2021/05/GINA-Main-Report-2021-V2-WMS.pdf .
Menzies-Gow A, Bafadhel M, Busse WW, Casale TB, Kocks JWH, Pavord ID, et al. An expert consensus framework for asthma remission as a treatment goal. J Allergy Clin Immunol. 2020;145(3):757–65.
pubmed: 31866436 doi: 10.1016/j.jaci.2019.12.006
Upham JW, Le Lievre C, Jackson DJ, Masoli M, Wechsler ME, Price DB, et al. Defining a severe asthma super-responder: findings from a Delphi process. J Allergy Clin Immunol Pract. 2021;9(11):3997–4004.
pubmed: 34271216 doi: 10.1016/j.jaip.2021.06.041
Thompson WG. The road to rome. Gastroenterology. 2006;130(5):1552–6.
pubmed: 16678568 doi: 10.1053/j.gastro.2006.03.011
Schmulson MJ, Drossman DA. What is new in Rome IV. J Neurogastroenterol Motil. 2017;23(2):151–63.
pubmed: 28274109 pmcid: 5383110 doi: 10.5056/jnm16214
Abassa KK, Lin XY, Xuan JY, Zhou HX, Guo YW. Diagnosis of eosinophilic gastroenteritis is easily missed. World J Gastroenterol. 2017;23(19):3556–64.
pubmed: 28596692 pmcid: 5442092 doi: 10.3748/wjg.v23.i19.3556
Mouthon L, Dunogue B, Guillevin L. Diagnosis and classification of eosinophilic granulomatosis with polyangiitis (formerly named Churg–Strauss syndrome). J Autoimmun. 2014;48–49:99–103.
pubmed: 24530234 doi: 10.1016/j.jaut.2014.01.018
Jensen ET, Martin CF, Kappelman MD, Dellon ES. Prevalence of eosinophilic gastritis, gastroenteritis, and colitis: estimates from a national administrative database. J Pediatr Gastroenterol Nutr. 2016;62(1):36–42.
pubmed: 25988554 pmcid: 4654708 doi: 10.1097/MPG.0000000000000865
James C, Assa’ad A. The global face of eosinophilic esophagitis: advocacy and research groups. Clin Rev Allergy Immunol. 2018;55(1):99–105.
pubmed: 29730731 doi: 10.1007/s12016-018-8683-2
Sauer BG, West A, McGowan EC. Multidisciplinary eosinophilic esophagitis care: a model for comprehensive patient-centered care through shared decision making between gastroenterology, allergy, and nutrition. Clin Gastroenterol Hepatol. 2021;19:2226–9.
pubmed: 34280551 doi: 10.1016/j.cgh.2021.07.025
Merkel PA, Manion M, Gopal-Srivastava R, Groft S, Jinnah HA, Robertson D, et al. The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis. 2016;11(1):66.
pubmed: 27194034 pmcid: 4870759 doi: 10.1186/s13023-016-0445-8
Aceves S, Collins MH, Rothenberg ME, Furuta GT, Gonsalves N, Consortium of Eosinophilic Gastrointestinal Disease Researchers. Advancing patient care through the consortium of eosinophilic gastrointestinal disease researchers (CEGIR). J Allergy Clin Immunol. 2020;145(1):28–37.
pubmed: 31758958 doi: 10.1016/j.jaci.2019.11.012
Shaheen NJ, Mukkada V, Eichinger CS, Schofield H, Todorova L, Falk GW. Natural history of eosinophilic esophagitis: a systematic review of epidemiology and disease course. Dis Esophagus. 2018;31(8): doy015.
pmcid: 6102800 doi: 10.1093/dote/doy015
Ryan D, Heatley H, Heaney LG, Jackson DJ, Pfeffer PE, Busby J, et al. Potential severe asthma hidden in UK primary care. J Allergy Clin Immunol Pract. 2021;9(4):1612-1623 e1619.
pubmed: 33309935 doi: 10.1016/j.jaip.2020.11.053
Kliewer KL, Cassin AM, Venter C. Dietary therapy for eosinophilic esophagitis: elimination and reintroduction. Clin Rev Allergy Immunol. 2018;55(1):70–87.
pubmed: 29238902 doi: 10.1007/s12016-017-8660-1
Busse WW, Kraft M, Rabe KF, Deniz Y, Rowe P, Ruddy M, et al. Understanding the key issues in the treatment of uncontrolled persistent asthma with type 2 inflammation. Eur Respir J. 2021;2003393 (Online ahead of print).
Taberna M, Gil Moncayo F, Jane-Salas E, Antonio M, Arribas L, Vilajosana E, et al. The multidisciplinary team (MDT) approach and quality of care. Front Oncol. 2020;10:85.
pubmed: 32266126 pmcid: 7100151 doi: 10.3389/fonc.2020.00085
APFED. Specialist finder 2021. https://apfed.org/find-support-treatment/specialist-finder/ .
EOS_Network. Find a doctor 2021. https://www.eosnetwork.org/find-a-doctor .
Cushen B, Menzies-Gow A. Benralizumab: an updated treatment of eosinophilic asthma. Expert Rev Respir Med. 2020;14(5):435–44.
pubmed: 32133878 doi: 10.1080/17476348.2020.1739526
Hare N, Bansal P, Bajowala SS, Abramson SL, Chervinskiy S, Corriel R, et al. Work group report: Covid-19: unmasking telemedicine. J Allergy Clin Immunol Pract. 2020;8(8):2461-2473 e2463.
pubmed: 32603900 pmcid: 7320693 doi: 10.1016/j.jaip.2020.06.038
Chiesa Fuxench ZC, Block JK, Boguniewicz M, Boyle J, Fonacier L, Gelfand JM, et al. Atopic dermatitis in America study: a cross-sectional study examining the prevalence and disease burden of atopic dermatitis in the US adult population. J Investig Dermatol. 2019;139(3):583–90.
pubmed: 30389491 doi: 10.1016/j.jid.2018.08.028
Persson MSM, Harman KE, Vinogradova Y, Langan SM, Hippisley-Cox J, Thomas KS, et al. Incidence, prevalence and mortality of bullous pemphigoid in England 1998–2017: a population-based cohort study. Br J Dermatol. 2021;184(1):68–77.
pubmed: 32147814 doi: 10.1111/bjd.19022
Vogelmeier CF, Chair A, Agusti A, Anzueto A, Barnes PJ, Bourbeau J, et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease 2021 report; 2021.
Fricke J, Avila G, Keller T, Weller K, Lau S, Maurer M, et al. Prevalence of chronic urticaria in children and adults across the globe: systematic review with meta-analysis. Allergy. 2020;75(2):423–32.
pubmed: 31494963 doi: 10.1111/all.14037
Limketkai BN, Shah SC, Hirano I, Bellaguarda E, Colombel JF. Epidemiology and implications of concurrent diagnosis of eosinophilic oesophagitis and IBD based on a prospective population-based analysis. Gut. 2019;68(12):2152–60.
pubmed: 30923072 doi: 10.1136/gutjnl-2018-318074
Dellon ES, Jensen ET, Martin CF, Shaheen NJ, Kappelman MD. Prevalence of eosinophilic esophagitis in the United States. Clin Gastroenterol Hepatol. 2014;12(4):589–96.
pubmed: 24035773 doi: 10.1016/j.cgh.2013.09.008
Suzuki Y, Suda T. Eosinophilic pneumonia: a review of the previous literature, causes, diagnosis, and management. Allergol Int. 2019;68(4):413–9.
pubmed: 31253537 doi: 10.1016/j.alit.2019.05.006
Requena G, Logie J, Gibbons DC, Steinfeld J, Van Dyke MK. The increasing incidence and prevalence of hypereosinophilic syndrome in the United Kingdom. Immun Inflamm Dis. 2021;9:1447–51.
pubmed: 34293251 pmcid: 8589407 doi: 10.1002/iid3.495
Khan A, Vandeplas G, Huynh TMT, Joish VN, Mannent L, Tomassen P, et al. The global allergy and asthma european network (galen) rhinosinusitis cohort: a large European cross-sectional study of chronic rhinosinusitis patients with and without nasal polyps. Rhinology. 2019;57(1):32–42.
pubmed: 29911211 doi: 10.4193/Rhin17.255

Auteurs

David J Jackson (DJ)

Guy's Severe Asthma Centre, Guy's Hospital, Guy's and St Thomas' NHS Trust, School of Immunology and Microbial Sciences, King's College London, London, SE1 9RT, UK. David.Jackson@gstt.nhs.uk.
School of Immunology and Microbial Sciences, King's College, London, UK. David.Jackson@gstt.nhs.uk.

Praveen Akuthota (P)

Division of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, University of California San Diego, La Jolla, CA, USA.

Rebeca Andradas (R)

Spanish Association of Eosinophilic Esophagitis-AEDESEO, Madrid, Spain.

Albert J Bredenoord (AJ)

Department of Gastroenterology and Hepatology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Amanda Cordell (A)

EOS Network Eosinophilic Diseases Charity, Colchester, England, UK.

Sarah Gray (S)

AusEE Inc., Queensland, Australia.

Joyce Kullman (J)

Vasculitis Foundation, Kansas City, MO, USA.

Sameer K Mathur (SK)

Division of Allergy, Pulmonary and Critical Care Medicine, Department of Medicine, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA.

Ian Pavord (I)

Oxford Respiratory NIHR BRC, Nuffield Department of Medicine, University of Oxford, Oxford, UK.

Florence Roufosse (F)

Department of Internal Medicine, Hôpital Erasme, Université Libre de Bruxelles, Brussels, Belgium.

Christian Rubio (C)

Global Genes, Boston, MA, USA.

Irena Clisson Rusek (IC)

Association Pour l'Information sur les Maladies à Eosinophiles-APIMEO, Bourg-la-Reine, France.

Dagmar Simon (D)

Department of Dermatology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.

Mary Jo Strobel (MJ)

American Partnership for Eosinophilic Disorders, Atlanta, GA, USA.

Tonya Winders (T)

Allergy and Asthma Network, Vienna, VA, USA.
Global Allergy and Airways Patient Platform, Vienna, Austria.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH