Parent and Surgeon Perspectives on Their Roles in Treatment Decisions for Infants with High-Grade Hydronephrosis
Vijaya M. Vemulakonda, MD, JD1, Mika K. Hamer, MPH2, Allison Kempe, MD, MPH2, Megan A. Morris, PhD, MPH2.
1Children's Hospital Colorado, Aurora, CO, USA, 2ACCORDS, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
BACKGROUND: Ureteropelvic junction (UPJ) obstruction is the most common etiology of high-grade hydronephrosis in infants and can be associated with renal damage. Although there is significant variability in treatment of infants with high-grade hydronephrosis, to date, there has been little research on the relative roles of parents and surgeons in the surgical decision-making process. The purpose of this study was to understand parents’ and surgeons’ perceived roles in the surgical decision-making process for infants with high-grade hydronephrosis.
METHODS: We conducted semi-structured interviews with pediatric urologists from three regionally diverse tertiary referral sites and parents of infants diagnosed and treated for Society for Fetal Urology grade 3 or 4 hydronephrosis at one tertiary pediatric urology practice. Purposive sampling was utilized to ensure adequate representation based on treatment choice (surgery or observation), patient gender, race/ethnicity, and distance from the practice. Survey domains included: (1) discussions about diagnosis and treatment options; (2) factors guiding treatment choice; and (3) participants' role in the decision-making process. Transcribed data and field notes were analyzed using a team-based, inductive grounded theory approach to identify major themes across the participants. Data were validated using member checking by members of a stakeholder advisory committee.
RESULTS: Thirteen physicians and thirty-two parents were interviewed between November 2016 and February 2018. Parents and surgeons agreed that decisions for treatment should be shared but that the surgeon was best equipped to guide the decision for treatment due to their clinical knowledge and experience. While parents reported having an active role in the treatment decision, they reported that their trust in the surgeon and their recommendations were the primary factor in their decisions. Surgeons reported using discussions with parents to not only educate them about treatment options but also to develop an ongoing relationship with parents and to influence parental choice. Overall, there was no difference in the perception of or satisfaction with parental role in decision-making between parents of children treated with surgery and those of children who were observed.
CONCLUSIONS: Although parents and surgeons describe decisions for surgery as primarily surgeon-driven, both groups are satisfied with their roles in the decision-making process. These findings suggest that surgeon rather than parent preferences are guiding treatment choices and associated variability in treatment of infants with high-grade hydronephrosis.
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