Pediatric Patient and Caregiver Agreement on Perioperative Expectations and Self-Reported Outcomes

Alignment between pediatric patients and caregiver perspectives on patient-reported outcome (PRO) data is contingent upon context. We aimed to assess agreement between patient and caregiver responses to a series of perioperative domains.

Agreement between pediatric patients and caregiver responses to preoperative and postoperative surveys about surgery preparedness, perioperative expectations, PRO Measurement Information System (PROMIS) measures for overall health and pain, and reaching milestones gathered as part of an ongoing clinical trial for children undergoing gastrointestinal surgery, was evaluated. Gwet's AC and Spearman's correlation coefficients were calculated, as appropriate, to assess agreement.

Of 209 enrolled patients, 65 (31.1%) dyads completed all three surveys and were included. For the domains of education, expectations, and comprehension, patients and caregivers had good agreement with Gwet AC₁ with values of 0.80, 0.61, and 0.64, respectively. For milestones, patients and caregivers had very good agreement (Gwet AC₁ of 0.95). Milestones measured whether patients achieved certain goals within a prespecified time, including enteral intake (Gwet AC₁ 0.91 and 0.92 respectively), transition to oral pain medication (Gwet AC₁ 0.94), ambulation (Gwet AC₁ 1.00), and return of bowel function (Gwet AC₁ 0.97). There was moderate to strong agreement between patients and caregivers on PROMIS pain questions (Spearman's correlation: 0.71 preoperatively and 0.51 postoperatively). On PROMIS global health questions, there was strong agreement (0.69 preoperatively and 0.65 postoperatively).

Pediatric patient and caregiver agreement on perioperative survey items ranged from moderate to strong. Caregivers' responses may be acceptable when some patient-level responses are not available.