Summary
Background
Certain pediatric urologic diagnoses can have serious long-term adverse health outcomes.
As a result, it is important for a child to be aware of their diagnosis and a prior
surgery. When children have surgery prior to the age of memory formation, it is incumbent
upon their caregiver to disclose this surgery. When and how to disclose this information
and even if this occurs, is not clear.
Objective
We developed a survey to assess caregiver plans to disclose early childhood pediatric
urologic surgery and evaluate for predictors of disclosure and resources needed.
Methods
A questionnaire was distributed to caregivers of male children ≤4 years old undergoing
single stage repair of hypospadias, inguinal hernia, chordee, or cryptorchidism as
part of an IRB approved research study. These surgeries were chosen due to being outpatient
surgeries with potential long-term complications and impact. The age criteria was
chosen due to likely being before patient memory formation and thus reliance on caregiver
disclosure of prior surgery. Surveys were collected the day of surgery and contained
information on caregiver demographics, validated health literacy screening, and plans
to disclose surgery.
Results
120 survey responses were collected (Summary Table). The majority of caregivers responded
affirmatively to planning to disclose their child's surgery (108; 90%). There was
no impact of caregiver age, gender, race, marital status, education level, health
literacy, or personal surgical history on plans to disclose surgery (p ≥ 0.05). Plan
to disclose was also not different across urologic surgery type. Race was significantly
associated with being “concerned or nervous about disclosing the surgery to the patient”.
The median patient age for planned disclosure was 10 years (IQR: 7–13). Only 17 respondents
(14%) stated they received any information about how to discuss this surgery with
the patient, however 83 (69%) felt this information would be helpful.
Conclusions
Our study suggests that most caregivers plan to discuss early childhood urologic surgeries
with children, however want further guidance in how to talk to their child. While
no specific surgery or demographic factor was found to be significantly associated
with plans to disclose surgery, it is concerning that one in ten patients will potentially
never learn about impactful surgery they had as a child. There is an opportunity for
us to better counsel our patients’ families about surgical disclosure and fill this
gap with quality improvement efforts.
Keywords
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Article info
Publication history
Published online: February 22, 2023
Accepted:
February 19,
2023
Received in revised form:
February 16,
2023
Received:
December 30,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
