[Spinal muscular atrophy and respiratory failure. How do primary care pediatricians act in a simulated scenario?]

Area of Science:

• Medical Simulation
• Pediatric Critical Care
• Bioethics

Background:

• Spinal muscular atrophy type 1 (SMA-1) is a severe condition often requiring ventilatory support for survival.
• Decisions regarding ventilatory support for infants with SMA-1 present significant ethical challenges for healthcare professionals.

Purpose of the Study:

• To evaluate the performance of Primary Care Pediatricians (PCP) in managing a simulated case of acute respiratory failure in an infant with SMA-1.
• To assess the clinical, ethical, and communication skills of PCPs when faced with complex pediatric cases.

Main Methods:

• A simulated scenario of acute respiratory failure in an infant with SMA-1 was used in a training program for PCPs.
• The performances of 34 groups of pediatricians across 17 courses were systematically analyzed.
• Evaluation focused on technical assistance, ethical considerations, and parent communication.

Main Results:

• 94% of teams correctly administered oxygen and initiated ventilatory support.
• PCPs encountered difficulties with ethical aspects, with only 6% actively involving parents in decision-making.
• Few teams inquired about quality of life (11.7%) or prognosis (12%), and none discussed treatment alternatives or contacted the referring pediatrician.

Conclusions:

• PCPs demonstrate challenges in family interaction and shared decision-making when managing simulated SMA-1 infants with respiratory failure.
• Practical training for pediatricians should incorporate ethical clinical problem-solving scenarios.