Does incontinence in a child with bladder exstrophy negatively affect caregivers? A mental health inventory survey

• Published in: Journal of pediatric urology
• Main Authors: Dawes, Kimberly, Abdulfattah, Suhaib, Shah, Jay, Modi, Akshat, Jikar, Bhavan, Joshi, Vidhi, Dave, Vedanti, Patel, Kajal, Bhatt, Ritu, Weiss, Dana, Joshi, Rakesh S., Shukla, Aseem R., Ramji, Jaishri
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 08.07.2025
• Subjects: Anxiety; Bladder exstrophy; Depression; Incontinence; Mental health; Pediatrics; Urology; Depression; Incontinence; Anxiety; Mental health; Bladder exstrophy
• ISSN: 1477-5131; 1873-4898; 1873-4898
• DOI: 10.1016/j.jpurol.2025.07.008

Urinary continence is a goal of bladder exstrophy epispadias complex (BEEC) surgical management. However, it is often not achieved until school age or later. Little is known about the mental health implications of this incontinence on caregivers and whether this should affect timing of surgical interventions to achieve continence. We hypothesized that caregivers of children with continuous incontinence or dry intervals <1 h per day/night exhibit adverse mental health outcomes. To evaluate the relationship between urinary incontinence of children with BEEC and caregiver mental health outcomes. In this IRB-approved study, randomly selected caregivers of a cohort of children with BEEC were administered the RAND 36-Item Short Form Survey (SF-36), Beck Anxiety Inventory, and Beck Depression Inventory. Dry intervals were determined by interviewing caregivers or outpatient records. BEEC patient sex, age, time from initial repair, and diagnosis along BEEC were recorded. Kruskal–Wallis rank test and linear regression analyses were performed to assess associations between dry intervals and mental health scores. P-values were 2-sided and a p < 0.05 was considered statistically significant. 110 BEEC caregivers were surveyed of a total of 110 children with BEEC, 84 (76.3 %) reported their children had total incontinence or dry interval <1 h per day/night. Caregiver mental health outcomes —anxiety, emotional well-being, and social functioning — were not significantly associated with dry interval stratification. Depression scores did increase with decreasing dry interval. However, all scores remained within normal parameters. Notably, social functioning scores were associated with decreased anxiety (p < 0.001) and higher emotional well-being scores were associated with decreased depression (p < 0.001). Continence status was not independently associated with most caregiver mental health outcomes. A trend towards increased depression scores with greater incontinence suggests the need for longitudinal follow-up.