Any Questions? Understanding the Functional Health Literacy in Patients Who Underwent Ureteroscopy.

OBJECTIVE: To correlate health literacy of patients undergoing ureteroscopy and identify gaps within current patient education practices in order to better tailor the preoperative experience. METHODS: Eighteen patients were retrospectively recruited to complete an in-depth semistructured interview and the Test of Functional Health Literacy for Adults (TOFHLA). All interviews were recorded, transcribed, and then coded and analyzed using the grounded theory of analysis. RESULTS: The average participant age was 56.2 ± 12.8years, and 10 (55.6%) identified as female. Education level ranged from some high school to a professional degree. The average TOFHLA score was 88.1 ± 11.7. Irrespective of score, all participants felt they understood the purpose and basic elements of a ureteroscopy. The use of nontechnical language, repetition, and previous healthcare experiences were identified as positive aspects of the education experience. However, 72.2% (n = 13) identified the primary gap in understanding revolved around the use, purpose, and pain associated with stents. CONCLUSION: Functional health literacy is an essential element, but not the only factor informing patient education and comprehension. Current practices are effective in explaining the basics of a ureteroscopy, but even when identified health literacy is higher than expected, a gap remains in stent education. Efforts should be made to better understand how stents can be effectively explained to patients in addition to continuing to refine education practices to elicit true comprehension.

Caregiver distress: A mixed methods evaluation of the mental health burden of caring for children with bladder exstrophy.

Introduction: Caring for children with bladder exstrophy-epispadias complex (BEEC) exacts a long-term emotional toll on caregivers. Previous studies leave a gap in understanding the impact that caring for a child with BEEC has on caregivers in low- and middle-income countries (LMIC). We hypothesize that families and caregivers experience psychological distress that has long gone unaddressed. Materials and methods: From 2018 to 2020, researchers conducted a multi-method evaluation of caregiver distress with participants recruited as part of the annual International Bladder Exstrophy Collaboration based in Ahmedabad, Gujarat, India. In 2018, pilot data was collected through cognitive interviews. In 2019, researchers conducted structured interviews predicated on themes from the previous year, which subsequently prompted formal mental health screenings in 2020. Caregivers who reported suicidal thoughts were immediately referred for intervention. Results: In 2018, caregivers described the primary source of stigma arose from their village (n = 9, 26.5%). Caregivers also identified long-term concerns (n = 18, 52.9%), including future fertility and marital prospects, as sources of anxiety. In 2019, caregivers substantiated preliminary findings with the primary source of anticipated (n = 9, 31%) and experienced (n = 19, 65.5%) stigma again stemming from their communities. Both cohorts identified the collaboration as a positive source of support (n = 23, 36.5%). In 2020, caregivers stated decreased emotional wellbeing as number of subsequent repairs increased (n = 54, 75%, p = 0.002). Caregivers of children who underwent initial surgery within 5 years of screening reported higher anxiety (n = 46, 63.8%) and this was exacerbated as the number of subsequent repairs increased (p = 0.043). Conclusion: Complex, long-term course of care, including additional surgeries, significantly impacts caregiver distress in the LMIC setting. Screening for caregivers of children with complex congenital anomalies, like BEEC, should be an essential element of any comprehensive effort to alleviate the global burden of disease.