Supporting shared decisions in pediatric otolaryngology (Phase 1): Needs assessment and decision aid development

Pediatric otolaryngology (ear, nose and throat) surgeries are the most common surgeries in children. Many pediatric otolaryngology surgeries could be considered minor, but they are not without risk and benefit is not guaranteed. Thus, surgeons and families must make complex decisions among treatment options. As an essential element for informed consent, shared decision-making is a process by which healthcare professionals and patients work together to reach a decision that is based on the best possible evidence and the patient's preferences and values. Parents considering surgeries for their children may experience difficulties with shared decision-making because of limited time for consultation with surgeons, conflicting or unclear evidence for treatment options, and lack of surgeon training in providing organized decision support. Often, parents must also consider perspective of more than one caregiver. Decision aids are evidence-based tools to help patients (and practitioners) become involved in decision-making by providing information about the treatment and by clarifying personal values. To date, there has been little work and little understanding of decision needs in pediatric otolaryngology and no comprehensive decision aids are available. Thus, the goal of this research is to identify decision needs in pediatric otolaryngology and develop a decision aid to address these needs. This program of research follows a structured decision aid design process outlined by the International Patient Decision Aid Standards Collaboration including needs assessment, research synthesis, prototype development, and assessment of acceptability, feasibility, comprehensibility, and usability of the prototype. This research represents a natural extension of interdisciplinary team's research in pediatric perioperative care and knowledge translation. This work will inform not only otolaryngology, but will provide insight into decision-making in surgery and pediatrics more broadly.