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Does A Child With Bladder Exstrophy’s Incontinence Negatively Affect Caregivers? A Mental Health Inventory Survey
Kimberly Dawes, BA1, Jaishri Ramji, MS, M.Ch (Ped. Surgery)2, Jay Shah, BS1, Suhaib Abdulfattah, MD1, Akshat Modi, MS1, Bhavan Jikar, MBBS2, Vidhi Joshi, BDS2, Vedanti Dave, MBBS2, Kajal Patel, MBBS2, Ritu Bhatt, BA2, Dana Weiss, MD1, Rakesh S. Joshi, M.Ch (Ped Surgery), D.N.B.MNAMS2, Aseem Shukla, MD, MHCI1.
1Children's Hospital of Philadelphia, Philadelphia, PA, USA, 2Civil Hospital, Ahmedabad, Ahmedabad, India.

BackgroundUrinary continence is a goal of bladder exstrophy epispadias complex (BEEC) surgical management. Most children with BEEC have varying levels of incontinence in childhood, but little is known about the mental health implications of this incontinence on caregivers and whether or when surgical interventions to achieve continence should be pursued. We hypothesized that caregivers of children with continuous incontinence or dry intervals <1 hour exhibit worse mental health outcomes.
Materials and MethodsRandomly selected caregivers of a cohort of children with BEEC cared for at a safety-net public hospital in a developing world context were administered the RAND 36-Item Short Form Survey (SF-36), Beck Anxiety, and Beck Depression screenings in an IRB-approved study. Dry intervals were determined by interviewing caregivers or obtained from available outpatient records. BEEC patient sex, age, time from initial repair, and diagnosis along BEEC were recorded. Kruskal-Wallis equality-of-populations rank test and linear regression test were performed to analyze the relationships of dry intervals and mental health scores. P-values were 2-sided and considered statistically significant if <0.05.
ResultsOut of 110 BEEC caregivers surveyed and interviewed, 84 (76.3%) had children with total incontinence or dry interval <1 hour (Table 1). Despite this, caregiver anxiety, emotional well-being, and social functioning were independent of dry interval stratification (Table 1). Depression scores increased with decreasing dry interval (Table 1); however, all scores were still within parameters considered normal. Increased social functioning was also associated with decreased anxiety (n=110, p<0.001) and increased emotional well-being was associated with decreased depression (n=95, p<0.001).
ConclusionsWe demonstrate that continence status of a child with BEEC does not negatively affect caregiver mental health. These findings challenge the assumption that surgery to alleviate incontinence should be pursued within an arbitrary time frame after initial BEEC repair.


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