BACKGROUND: Although shared decision-making is an essential component of patient-centered healthcare, its role in pediatric patient populations is not well-defined. Particularly among children presenting to pediatric plastic surgery clinics, the extent of agreement among parents, children, and providers regarding the extent of autonomous decision-making remains unclear. The goal of the present study was to define the preferred level of autonomy in decision-making among the various stakeholders involved in cleft care.
METHODS: We surveyed children presenting to plastic surgery clinics (n = 100) and their caregivers regarding their preferences on autonomy during the process of surgical decision-making. Patients and their parents independently completed surveys on their preferred method of decision-making and autonomy. Fleiss’ kappa was used to assess the extent of agreement between groups. Bivariate chi-square tests were used to assess the relationship between decision-making preferences and demographic factors such as age, gender, and socioeconomic status. Multinomial logistic regression was performed to assess the relationship between age and sex and child/parent preference.
RESULTS: Of the 100 children surveyed, 64 were female; the average age was 12.5 years. Children and their caregivers disagreed upon their overall decision-making preferences (k = 0.0385). Overall, 40% of children and 67% of parents preferred the option of completely shared decision-making among the patient, parent, and provider; the minority of children (16%) preferred the doctor to be the sole decision-maker. Approximately 20% of children desired complete autonomy. Child’s preference was significantly associated with their age; the relative risk of children deferring to parents or surgeons over a shared approach was lower for adolescents compared to children under 10 years old (RR, 0.202; 95% confidence interval, 0.054–0.751; P = 0.017). Alternatively, caregiver’s preferences did not change based on the child’s age, but rather based on the child’s sex. Parents were less likely to prefer a shared approach when the child was female (odds ratio, 0.365; 95% confidence interval, 0.139–0.961; P = 0.04).
CONCLUSIONS: Although most parents preferred a completely shared approach to decision-making, children desired greater autonomy, particularly with increasing age. There was limited agreement between parents and children regarding their decision-making preferences. Providers must be cognizant of differing preferences among parents and children when discussing treatment plans and surgical algorithms; to optimize patient and parent satisfaction, differing methods of discussion may be required to respect the preferences of all stakeholders involved.