National roadmap for the management of congenital heart disease in transition to adulthood in Iran: A policy brief

Kalhor, Faramarz; Tagharrobi, Zahra; Taghadosi, Mohsen

doi:10.48307/FMSJ.2025.29.S.706

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Volume 29, Issue 7 (Special Issue 2025)

Feyz Med Sci J 2025, 29(7): 706-710

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National roadmap for the management of congenital heart disease in transition to adulthood in Iran: A policy brief

Faramarz Kalhor

, Zahra Tagharrobi

, Mohsen Taghadosi ^*

Trauma Nursing Research Center, Kashan University of Medical Sciences, Kashan, Iran , taghadosi_m@kaums.ac.ir

Abstract: (200 Views)

Advances in medical science over the past four decades have increased the survival rate of infants with congenital heart disease (CHD) to over 90%. This success has presented the Iranian health system with a growing population of Adults with Congenital Heart Disease (ACHD). The lack of a structured "Transition" system to transfer patients from pediatric to adult services has led to "structural abandonment," loss to follow-up, increased emergency hospitalizations, and significant financial burdens on insurance systems.
Evidence suggests that patients experience the transition period as "living in a limbo of uncertainty." This situation stems from systemic failures (lack of protocols and shortage of specialists) and cultural barriers, such as family overprotection that hinders the development of patient independence and self-management skills. Beyond family influence, these patients face societal ‘stigma’ associated with their condition, which permeates all aspects of their daily lives, including education, employment, marriage, and social relationships, thereby influencing their decision-making.
In response to this issue, three policy options are prioritized: 1) Establishing joint transition clinics; 2) Defining the role of a Transition Navigator nurse; 3) Reforming employment and insurance regulations to reduce social stigma and ensure employment security and insurance coverage for patients.
Furthermore, formulating and notifying a "National Protocol for the Transitional Care of ACHD Patients" that focuses on patient empowerment and intersectoral coordination is recommended.

Keywords: Congenital heart diseases, Adult, Transitional care, Iran's health system, Policy brief

Full-Text [PDF 319 kb] (43 Downloads)

Type of Study: Policy Brief | Subject: General
Received: 2025/12/29 | Revised: 2026/04/26 | Accepted: 2026/01/20 | Published: 2026/03/15

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‎ 10.48307/FMSJ.2025.29.S.706

Ethics code: IR.KAUMS.MEDNT.REC.1403.047

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Kalhor F, Tagharrobi Z, Taghadosi M. National roadmap for the management of congenital heart disease in transition to adulthood in Iran: A policy brief. Feyz Med Sci J 2025; 29 (7) :706-710
URL: http://feyz.kaums.ac.ir/article-1-5481-en.html

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