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Caregiver Disclosure of Common Early Childhood Pediatric Urologic Surgeries
Michael Ernst, MD, Seth Alpert, MD, Daniel Dajusta, MD, Molly Fuchs, MD, Rama Jayanthi, MD, Daryl McLeod, MD, Christina Ching, MD.
Nationwide Children's Hospital, Columbus, OH, USA.

Background: Certain pediatric urologic diagnoses can have serious long term adverse health outcomes. As a result, it can be 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, especially in the pediatric urologic literature. 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 children ≤4 years old undergoing repair of distal 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. Fisher's exact test was used to test relationships between categorical variables and Kruskal-Wallis test was used for continuous variables.
Results: 120 survey responses were collected (Table 1). 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", with 3.2% (3/93) of white caregivers answering affirmatively compared to 33% (5/15) of Black or African American caregivers (p=0.002). The median patient age for planned disclosure was 10 years (IQR: 7-13). Poor health literacy was associated with a significantly older median age of planned disclosure of surgery (13 vs. 10 years, p=0.01). 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. Most commonly caregivers would like information about disclosing the surgery when the patient is at an age that they can understand (56 respondents, 47%).
Conclusions: Our study suggests that most caregivers plan to discuss certain 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.

Caregiver Demographics, Plan to Disclose, and Concerns with Disclosure
N (%)Plan to disclose (%)pNervous to disclose (%)p
Surgery patient underwent0.90.9
Chordee Release18 (15)17 (94)0 (0)
Orchiopexy44 (37)40 (91)4 (9.1)
Inguinal Hernia Repair28 (23)24 (86)1 (3.7)
Distal Hypospadias Repair30 (25)27 (90)4 (14)
Caregiver Age Quartile, years [median (IQR)]30 (27, 34)0.40.084
19-2736 (30)34 (94)3 (8.3)
28-3025 (21)22 (88)0 (0)
31-3430 (25)28 (93)1 (3.3)
35-5529 (24)24 (83)5 (18)
Caregiver Gender0.80.9
Male42 (35)37 (88)3 (7.3)
Female77 (64.2)70 (91)6 (7.9)
Prefer not to say1 (0.8)
Caregiver Race0.30.002
Asian7 (5.8)6 (86)1 (14)
Black or African American15 (12)14 (93)5 (33)
White95 (79)86 (91)3 (3.2)
Highest Level of Education0.40.4
High School49 (41)46 (94)4 (8.2)
Trade School/Other19 (16)15 (79)1 (5.3)
Bachelor''s Degree31 (2628 (90)1 (3.2)
Master''s Degree/Ph.D. or higher20 (17)18 (90)3 (17)
Marital Status0.50.5
Married78 (65)71 (91)5 (6.5)
Not Married40 (33.3)35 (88)4 (10)
Prefer not to say2 (1.7)
Caregiver previously had surgery0.60.9
Yes74 (62)66 (89)6 (8)
No46 (38)42 (91)3 (7)
Caregiver previously had genital surgery0.50.009
Yes7 (6)6 (86)3 (43)
No113 (94)102 (90)6 (5.4)


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