Decision aid prototype development for parents considering adenotonsillectomy for their children with sleep disordered breathing

Erin Maguire, Paul Hong, Krista Ritchie, Jeremy Meier, Karen Archibald, Jill Chorney

To describe the process involved in developing a decision aid prototype for parents considering adenotonsillectomy for their children with sleep disordered breathing. A paper-based decision aid prototype was developed using the framework proposed by the International Patient Decision Aids Standards Collaborative. The decision aid focused on two main treatment options: watchful waiting and adenotonsillectomy. Usability was assessed with parents of pediatric patients and providers with qualitative content analysis of semi-structured interviews, which included open-ended user feedback. A steering committee composed of key stakeholders was assembled. A needs assessment was then performed, which confirmed the need for a decision support tool. A decision aid prototype was developed and modified based on semi-structured qualitative interviews and a scoping literature review. The prototype provided information on the condition, risk and benefits of treatments, and values clarification. The prototype underwent three cycles of accessibility, feasibility, and comprehensibility testing, incorporating feedback from all stakeholders to develop the final decision aid prototype. A standardized, iterative methodology was used to develop a decision aid prototype for parents considering adenotonsillectomy for their children with sleep disordered breathing. The decision aid prototype appeared feasible, acceptable and comprehensible, and may serve as an effective means of improving shared decision-making.