Surgical decision-making in infants with suspected UPJ obstruction: stakeholder perspectives

Although there are significant demographic and clinical variations in treatment decisions for infants with high-grade hydronephrosis concerning for ureteropelvic junction obstruction (UPJO), there has been little research on the roles of parents and surgeons in the surgical decision-making (DM) process.

The purpose of this study was to understand parents' and surgeons' perceived roles in the surgical DM process for infants with high-grade hydronephrosis.

Semistructured interviews were conducted with pediatric urologists from three regionally diverse tertiary referral sites and parents of infants diagnosed and treated for unilateral Society for Fetal Urology grade 3 or 4 hydronephrosis at one tertiary pediatric urology practice. Purposive sampling was used to ensure adequate representation of parents based on treatment choice, 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 DM process. Transcribed data and field notes were analyzed using a team-based, inductive grounded theory qualitative approach.

Thirteen physicians and 32 parents were interviewed between November 2016 and November 2017. Parents and surgeons agreed that the surgeon was best equipped to guide treatment decisions because of their clinical knowledge and experience. Parents reported that their trust in the surgeon was the primary factor in their decisions. Surgeons reported tailoring discussions with parents to not only educate them about treatment options but also to develop an ongoing relationship with parents. Both parents and surgeons reported being satisfied with their roles in the DM process.

This study suggests that parental trust in the surgeon and surgeon recommendations drive DM. This may be due to a lack of explicit discussion of options or of parental values and preferences for care. Limited discussions may also impact parental understanding of risks and potential complications. These findings are similar to those of prior studies in adults and children considering elective surgery.

In this study, parents and surgeons reported that surgeon recommendations, rather than parent preferences, guide treatment choices for infants with suspected UPJO. Both parents and surgeons are satisfied with a physician-driven approach to DM, suggesting that, in situations where the perceived risk is low and parental knowledge is limited, parents may find a physician-led approach beneficial. Data gleaned from this study will be used to inform future quantitative studies evaluating factors guiding surgeon recommendations for treatment and their associations with underlying treatment variation.