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Evaluation of the congenital hypothyroidism screening programme in Iran: a 3-year retrospective cohort study
Ladan Mehran1, Davood Khalili2,3, Shahin Yarahmadi4
1Endocrine Research Center, Research Institute for Endocrine Sciences, Shahid Beheshti University of Medical Sciences, Tehran, The Islamic Republic of Iran.
Insights
Iran
Area of Science:
- Endocrinology
- Pediatrics
- Public Health
Background:
- Congenital hypothyroidism (CH) screening is crucial for early intervention.
- Iran's national newborn screening program for CH requires evaluation.
Purpose of the Study:
- To assess the effectiveness of Iran's congenital hypothyroidism screening program.
- Evaluate diagnosis, management, and follow-up over three years (2011-2014).
Main Methods:
- Retrospective cohort study design.
- Data collected from 17 randomly selected university districts across Iran.
- Analysis of program coverage, screening/treatment age, recall rates, and follow-up compliance.
Main Results:
- Screening covered 90.3% of births; 0.22% confirmed CH cases.
- Initial positive predictive value (PPV) was 6.9%, improved to 31.3% after a second screen.
- Treatment initiated before 40 days for 90.6% of patients; 13.4% lost to follow-up.
Conclusions:
- Iran's CH screening protocols are established but require enhanced monitoring.
- Improving patient management and reducing follow-up loss are critical.
- Addressing high false positive rates in screening is a priority.
Objective:
To evaluate the newborn screening programme for congenital hypothyroidism (CH) in Iran from diagnosis to management and follow-up for 3 years from 2011 to 2014.
Design:
Retrospective cohort.
Setting And Patients:
Seventeen university districts were randomly selected from 30 provinces. Central data in each district were gathered and collectively analysed. Congenital hypothyroid subjects were followed for 3 years.
Main Outcome Measures:
Programme coverage, screening and treatment age, recall rate, compliance to follow-ups.
Results:
The total number of births in 2011 was 501 726, of which 452 918 neonates (90.3%) were screened and 15 671 (3.46%) were recalled; 1085 (1:462, 0.22%) were confirmed as having CH (57.1%: permanent, 42.9%: transient) and followed for 3 years. Positive predictive value (PPV) for the first screening test was 6.9%. After the second screening, recall rate was reduced to 0.69% and PPV increased to 31.3%. Median age at screening was 6 (3-9) days and for 90.6% of patients treatment was initiated before 40 days of age with a median levothyroxine dosage of 25 µg/day; 131 (13.4%) were lost to follow-up. Mean number of follow-up visits over 3 years was 5.7 (95% CI 5.5 to 5.9) and 23% (n=225) had total compliance to all follow-ups. Median time for thyroid stimulating hormone normalisation was 45 days, 95% CI (41.1 to 48.8).
Conclusion:
In Iran, despite well-established protocols of screening and detecting CH subjects, stricter implementation of a structured system for monitoring and surveillance is needed to promote the management of patients and to reduce rates of loss to follow-up. Determining and addressing the causes of high false positive rates must be prioritised.
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