Transition Practice for Primary Immunodeficiency Diseases in Southeast Asia: a Regional Survey

Overview

Journal Front Immunol

Specialty Allergy & Immunology

Date 2023 Aug 2

PMID 37529038

Authors

Chee Mun Chan

Amir Hamzah Abdul Latiff

Lokman Mohd Noh

Intan Hakimah Ismail

Intan Juliana Abd Hamid

Woei Kang Liew

Youjia Zhong

Narissara Suratannon

Rapisa Nantanee

Fatima Johanna Santos-Ocampo

Mary Anne R Castor

Le Nguyen-Ngoc-Quynh

Anh Thi Van Nguyen

Huyen Thanh Thuc

Nguyen Minh Tuan

Dina Muktiarti

Rizqi Amalia

Sophal Chean

Lytheang Try

Adli Ali

Affiliations

Soon will be listed here.

Abstract

Introduction: With increased diagnostic capabilities and treatment modalities in the field of primary immunodeficiencies (PID), many pediatric patients survive beyond childhood and experience a change of care to the adult-oriented healthcare system. Unfortunately, the transition pathways for PID are less clearly defined, resulting in deterioration of quality of care in adulthood. Hence, this is the first regional study to address PID clinicians' opinions on practices and challenges of transition care in 7 Southeast Asia (SEA) countries.

Methods: We adopted a cross-sectional study design through an online survey platform to enquire opinions of transition practices from expert representatives in 7 SEA countries.

Results: Regionally, 3 out 7 countries reported having no practice of transition care. Among cited challenges were reluctant adaptation by patients and caregivers to unfamiliarized adult healthcare systems, inadequate ratio of adult immunologists to patients and lack of facilities for transfer.

Discussion And Conclusion: Our study provides evidence to advocate policy makers on the importance of standardized integration of transition practice towards betterment of transiting PID patients into adulthood.

Citing Articles

Recommendations for Transitioning Young People with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to Adult Care.

Israni M, Alderson E, Mahlaoui N, Obici L, Rossi-Semerano L, Lachmann H J Clin Immunol. 2024; 45(1):57.

PMID: 39690292 PMC: 11652586. DOI: 10.1007/s10875-024-01838-y.

Newborn screening for severe combined immunodeficiency in Malaysia: current status, challenges and progress.

Chang W, Mohd Noh L, Abdul Latiff A, Woo K, Ismail I, Hamid I Front Immunol. 2024; 15:1456769.

PMID: 39416794 PMC: 11479922. DOI: 10.3389/fimmu.2024.1456769.

Paving the way in implementation of SCID newborn screening in developing nations: feasibility study and strategies to move forward in Malaysia.

Kumarasamy G, Khairiz K, Chang W, Aye T, Ali A Front Immunol. 2024; 15:1400247.

PMID: 38983864 PMC: 11231083. DOI: 10.3389/fimmu.2024.1400247.

Knowledge, awareness, and perception on genetic testing for primary immunodeficiency disease among parents in Malaysia: a qualitative study.

Ahmad Azahari A, Hakim Zada F, Ismail I, Hamid I, Lim B, Ismail N Front Immunol. 2024; 14:1308305.

PMID: 38283358 PMC: 10811462. DOI: 10.3389/fimmu.2023.1308305.

Transition of care in inborn errors of immunity.

Tadros S, Burns S Curr Opin Allergy Clin Immunol. 2023; 23(6):455-460.

PMID: 37797181 PMC: 10621636. DOI: 10.1097/ACI.0000000000000948.

References

Tangye S, Al-Herz W, Bousfiha A, Chatila T, Cunningham-Rundles C, Etzioni A . Human Inborn Errors of Immunity: 2019 Update on the Classification from the International Union of Immunological Societies Expert Committee. J Clin Immunol. 2020; 40(1):24-64. PMC: 7082301. DOI: 10.1007/s10875-019-00737-x. View

Israni M, Nicholson B, Mahlaoui N, Obici L, Rossi-Semerano L, Lachmann H . Current Transition Practice for Primary Immunodeficiencies and Autoinflammatory Diseases in Europe: a RITA-ERN Survey. J Clin Immunol. 2022; 43(1):206-216. PMC: 9840587. DOI: 10.1007/s10875-022-01345-y. View

Chan C, Mahlaoui N, Sanchez Ramon S, Pergent M, Solis L, Prevot J . Primary immunodeficiencies (PID) Life Index in Southeast Asia: A comparative analysis of PID Principles of Care (PoC). Front Immunol. 2023; 14:1151335. PMC: 10097921. DOI: 10.3389/fimmu.2023.1151335. View

Meyts I, Bousfiha A, Duff C, Singh S, Lau Y, Condino-Neto A . Primary Immunodeficiencies: A Decade of Progress and a Promising Future. Front Immunol. 2021; 11:625753. PMC: 7935502. DOI: 10.3389/fimmu.2020.625753. View

Cirillo E, Giardino G, Ricci S, Moschese V, Lougaris V, Conti F . Consensus of the Italian Primary Immunodeficiency Network on transition management from pediatric to adult care in patients affected with childhood-onset inborn errors of immunity. J Allergy Clin Immunol. 2020; 146(5):967-983. DOI: 10.1016/j.jaci.2020.08.010. View

Vuong Q . Be rich or don't be sick: estimating Vietnamese patients' risk of falling into destitution. Springerplus. 2015; 4:529. PMC: 4577521. DOI: 10.1186/s40064-015-1279-x. View

Fegran L, Hall E, Uhrenfeldt L, Aagaard H, Ludvigsen M . Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud. 2013; 51(1):123-35. DOI: 10.1016/j.ijnurstu.2013.02.001. View

Peshko D, Kulbachinskaya E, Korsunskiy I, Kondrikova E, Pulvirenti F, Quinti I . Health-Related Quality of Life in Children and Adults with Primary Immunodeficiencies: A Systematic Review and Meta-Analysis. J Allergy Clin Immunol Pract. 2019; 7(6):1929-1957.e5. DOI: 10.1016/j.jaip.2019.02.013. View

Sharma N, OHare K, Antonelli R, Sawicki G . Transition care: future directions in education, health policy, and outcomes research. Acad Pediatr. 2014; 14(2):120-7. PMC: 4098714. DOI: 10.1016/j.acap.2013.11.007. View

10.

Barlogis V, Mahlaoui N, Auquier P, Pellier I, Fouyssac F, Vercasson C . Physical health conditions and quality of life in adults with primary immunodeficiency diagnosed during childhood: A French Reference Center for PIDs (CEREDIH) study. J Allergy Clin Immunol. 2016; 139(4):1275-1281.e7. DOI: 10.1016/j.jaci.2016.08.027. View

11.

. Correction: . Ann Rheum Dis. 2018; 77(6):960. DOI: 10.1136/annrheumdis-2016-210112corr1. View

12.

Adli A, Wahab A, Abdul Latiff A, Ismail I, Faizah M, Boekhren K . Clinical and laboratory observation on immunoglobulin replacement therapy switching from an intravenous to a subcutaneous route in a Malaysian X-linked agammaglobulinemia patient. Med J Malaysia. 2022; 77(1):95-97. View

13.

Cooley W, Sagerman P . Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011; 128(1):182-200. DOI: 10.1542/peds.2011-0969. View

14.

Solis L, Nordin J, Prevot J, Mahlaoui N, Sanchez-Ramon S, Ali A . The PID Life Index: an interactive tool to measure the status of the PID healthcare environment in any given country. Orphanet J Rare Dis. 2022; 17(1):11. PMC: 8742924. DOI: 10.1186/s13023-021-02161-0. View

15.

Guffroy A, Martin T, Korganow A . Adolescents and young adults (AYAs) affected by chronic immunological disease: A tool-box for success during the transition to adult care. Clin Immunol. 2018; 197:198-204. DOI: 10.1016/j.clim.2018.10.010. View

16.

. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110(6 Pt 2):1304-6. View

17.

Wong L, Chan F, Wong F, Wong E, Huen K, Yeoh E . Transition care for adolescents and families with chronic illnesses. J Adolesc Health. 2010; 47(6):540-6. DOI: 10.1016/j.jadohealth.2010.04.002. View

18.

McDonagh J, Farre A . Transitional Care in Rheumatology: a Review of the Literature from the Past 5 Years. Curr Rheumatol Rep. 2019; 21(10):57. PMC: 6731189. DOI: 10.1007/s11926-019-0855-4. View

19.

Hazel E, Zhang X, Duffy C, Campillo S . High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2010; 8:2. PMC: 2820032. DOI: 10.1186/1546-0096-8-2. View

20.

Mahlaoui N, Warnatz K, Jones A, Workman S, Cant A . Advances in the Care of Primary Immunodeficiencies (PIDs): from Birth to Adulthood. J Clin Immunol. 2017; 37(5):452-460. PMC: 5489581. DOI: 10.1007/s10875-017-0401-y. View