137 - Shared Decision-Making in Children with Cleft: A Parent Perspective

Purpose: To assess whether there are differences in caregiver perception of the shared decision-making process during treatment discussions for the child with cleft lip and/or palate (CLP).

Methods: A questionnaire was administered to caregivers of children with CLP. The questionnaire consisted of 39 items regarding demographics, treatment, and satisfaction. Caregivers were asked to recall a recent consultation and indicate their level of agreement with the implementation of the different steps of the SDM process.

Results: A total of 110 caregivers completed the survey. The average age was 36.1 years. Over half of the sample identified as Hispanic (52%), 35% as White, 6% Black and 7% Asian. When asked about the SDM process, the average level of agreement was higher for the steps of SDM that assess understanding and expectations (90%), risks and benefits (87%) and arrange for follow-up (87%). The average level of agreement was lower for the initial and latter steps. Individual factors showed significant differences in acceptance of the various steps of the process. A higher level of agreement with disclosure was reported by caregivers whose children recently underwent surgeries including premaxillary set back, ear tube placement, eye surgery, stoma closure, and dental rehabilitation (94%), compared to those who underwent secondary lip surgery (58%) and alveolar bone graft (76%). A lower level of agreement with discussion of risks and benefits was reported by caregivers working full time (85%) compared to those who did not report working full time (90%). A higher level of agreement during negotiation was reported by caregivers with shorter appointments (94%) compared to caregivers with appointments lasting between 60-90 minutes (68%). Lower levels of agreement when arriving to a shared decision were seen among those reporting annual incomes of less than $25,000 (64%) compared to those reporting annual incomes of greater than $51,000 (93%). Ninety-one percent indicated a high level of satisfaction with overall treatment, 7% reported it could be better and 1% each reported average satisfaction and no satisfaction.

Conclusions: Our data shows a wide range in acceptance of the individual steps of SDM, but a high level of satisfaction with overall treatment. This suggests that high levels of parental participation in the decision-making process is not a pre-requisite for satisfaction.