Screening infants for neuroblastoma: the parents' perspective in false-positive cases

Area of Science:

• Pediatric Oncology
• Medical Screening
• Psychological Impact of Healthcare

Background:

• Newborn screening programs aim for early detection of serious diseases.
• False-positive results in screening can cause undue stress for families.
• Neuroblastoma screening in infants is a critical area for research.

Purpose of the Study:

• To investigate parental reactions and experiences with false-positive neuroblastoma screening results in 6-month-old infants.
• To understand the psychological impact and concerns arising from inaccurate screening diagnoses.

Main Methods:

• Qualitative study involving interviews with parents of infants identified as false-positive cases.
• Analysis of parental emotional responses, including worry, anxiety, and lasting concerns.
• Examination of the period between initial screening and clinical investigation.

Main Results:

• Five parents reported significant worry or extreme worry following a false-positive result.
• Concerns included contemplating treatment and the possibility of their child dying.
• One parent expressed dissatisfaction with the investigation process, leading to increased anxiety.
• Two parents reported persistent concerns attributed to the screening experience.

Conclusions:

• False-positive neuroblastoma screening results can induce substantial parental anxiety and lasting psychological distress.
• The communication and handling of investigations following screening are crucial for parental well-being.
• Further research is needed to mitigate the negative psychological impact of screening inaccuracies.