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Delayed diagnosis in children with congenital heart disease: a mixed-method study
Indah K Murni1, Muhammad Taufik Wirawan2, Linda Patmasari2
1Department of Child Health, Dr. Sardjito Hospital / Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Jalan Kesehatan No 1, Sekip, Yogyakarta, 55281, Indonesia. indah.kartika.m@ugm.ac.id.
Insights
Six in ten children experienced delayed diagnosis of congenital heart disease (CHD). Delayed diagnosis by doctors was the primary cause, particularly in cyanotic CHD cases, highlighting critical areas for intervention.
Area of Science:
- Pediatrics
- Cardiology
- Public Health
Background:
- Delayed diagnosis of congenital heart disease (CHD) leads to increased morbidity and mortality.
- Early detection is crucial for improving outcomes in pediatric cardiac patients.
Purpose of the Study:
- To determine the proportion of delayed diagnoses in children with CHD.
- To identify factors associated with delayed CHD diagnosis.
Main Methods:
- A prospective, mixed-methods cohort study was conducted.
- Included were 838 children (<18 years) with newly diagnosed, echocardiography-confirmed CHD.
- Data collected via medical records and caregiver interviews; logistic regression identified associated factors.
Main Results:
- 60.8% of all children with CHD faced delayed diagnosis, with higher rates in cyanotic CHD (86.2%).
- Common causes included diagnostic delays by doctors, midwifery care, financial, and referral issues.
- Factors independently associated with delay were cyanotic CHD, rural residence, non-syndromic cases, low income, normal birth, and term gestation.
Conclusions:
- Significant delays in CHD diagnosis are prevalent, affecting six in ten children.
- Doctor-related delays are most common, emphasizing the need for improved clinical awareness and diagnostic pathways.
- Cyanotic CHD, socioeconomic factors, and geographical location significantly impact diagnostic timeliness, necessitating targeted interventions.
Background:
Delayed diagnosis of congenital heart disease (CHD) causes significant morbidity and mortality. We aimed to determine the proportion of delayed diagnosis of CHD and factors related to the delayed diagnosis.
Methods:
A prospective cohort study with mixed-methods was conducted in Dr. Sardjito Hospital, Yogyakarta, Indonesia. Patients aged < 18 years with newly diagnosed CHD and echocardiography confirmed CHD were included. Data were recorded from medical records and interviews from direct caregivers. Logistic regression was used to identify independent factors associated with the delay.
Results:
A total of 838 patients were included with median age of 2.9 years (0-17.7 years), with female predominance (54.2%, n = 454). The proportions of delayed diagnosis were 60.8% (510), 54.9% (373) and 86.2% (137) in all children with CHD, acyanotic and cyanotic CHD, respectively. Delayed diagnosis by doctor was the most common cause, followed by delayed diagnosis related to midwifery care, financial, referral/follow-up, and social factors. In multivariate analysis, cyanotic CHD, residence outside the city, non-syndromic, low family income, normal labour and at term gestation at birth were independently associated with the delay. At diagnosis, heart failure and pulmonary hypertension occurred in 414 (49.4%) and 132 (15.8%) children with CHD, respectively.
Conclusions:
Six in ten children with CHD were diagnosed with significant delay. Delayed diagnosis by doctor was the most common cause. Children with cyanotic CHD, residence outside the city, non-syndromic, low family income, normal labour and at term gestation at birth were independently associated with the delay. Comorbid complications in delayed diagnosis of CHD were prevalent.
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