Parental attitude to participating in long‐term follow‐up studies of their children's health after in utero diagnosis of abnormalities

Abstract

To determine whether parents might be distressed if approached to take part in long-term follow-up of their children's health and development. A short, closed format anonymous questionnaire seeking parental opinion on being asked about their child's health was offered to attendees for obstetric ultrasound and parents of children attending paediatric cardiology clinics. In total, 70% of the 266 respondents were attending for ultrasound and approximately 30% paediatric cardiology clinics. In total, 66 respondents had children with long-term health problems, 28 with learning difficulties and 61 had previously had an abnormal obstetric ultrasound scan. Greater than 90% of parents were happy to be contacted and asked questions about their children's health and development, regardless of their child's health or their experiences during prenatal ultrasonography. Our results provide reassurance to future researchers and ethics committees that studies of children's later health after in utero diagnosis of anomalies are unlikely to prove unacceptable to many parents.