ABSTRACT
BACKGROUND: Effective shared decision-making in pediatric surgery requires clarity regarding which surgical outcomes are most important to patients and their families, and how they prefer to receive the information. Despite how essential this is for effective risk communication, little is known about the communication needs and preferences of patients and their families in elective pediatric surgery. METHODS: We administered a mailed and online cross-sectional survey in English and French to 548 families before or after surgery for hernia/hydrocele repair or tonsillectomy/adenoidectomy between July 2019 and February 2021. The survey consisted of 22 questions eliciting most valued patient-reported outcomes (PROs) across 4 domains: health-related quality of life (5), functional status (5), symptoms and symptom burden (5), health behaviours and patient experience (7), as well as overall impressions (3), surgical risks (5), communication preferences (4), and demographic questions (16). RESULTS: The survey was completed by 368 patient families (60 preoperative, 308 postoperative, response rate 67.2%). Most respondents (72%) indicated a significant desire to be informed on all listed PROs alongside surgical complications, and highly valued all functional and quality of life outcomes (92.9% & 89.8%, respectively). Preoperatively, patient families preferred to receive information in the form of pamphlets and websites, whereas postoperatively they preferred direct communication. CONCLUSION: Families value functional and quality of life PROs as much as clinical outcomes, and increasingly seek more contemporary (electronic) means of risk communication than we currently offer. This data will inform the development of mobile tools for personalized communication in pediatric surgery.
