Interdisciplinary pediatric care for bladder exstrophy-epispadias patients: Combining medical and behavioral assessment and treatment
Jessica C. Hankinson, Ph.D., Marlo Eldridge, DNP, John P. Gearhart, M.D..
Johns Hopkins School of Medicine, Baltimore, MD, USA.
Introduction: Research has supported psychosocial involvement and called for targeted treatments for pediatric patients with bladder exstrophy-epispadias complex (BEEC) (e.g. Pennison et al., 2014). Psychologically, children with BEEC present with high levels of anxiety and depression (e.g. Reiner & Gearhart, 2006) and have more difficulties as they get older (e.g. Hankinson et al., 2014). Close cooperation of multiple providers including urologists, surgeons, nurses, and psychologists has been highlighted in the care of BEEC patient from infancy through adulthood (Ebert et al., 2012). The current paper describes an interdisciplinary clinic model in the evaluation and treatment of BEEC patients from early childhood through adolescence. In a leading children’s hospital, a pediatric urology nurse practitioner and pediatric psychologist have combined medical and behavioral treatment approaches to optimally prepare patients for continence procedures, and ongoing adjustment and treatment post surgically. Our clinic treats the largest number of children affected by BEEC internationally. The purpose of this study is to disseminate our clinic model and treatment approaches. Materials & Methods: Patients typically visit every 3-12 months for preparatory visits. At each visit, they are seen by a nurse practitioner for a 3 day series of one hour comprehensive medical visits focused on optimizing voiding, hydration, constipation management, pharmacologic management, and performing biofeedback procedures aimed at improving pelvic floor function. A structured voiding regimen in preparation for surgery, consists of every 2 hour toilet sits 2 minutes in length, focused on relaxation not production, paired with measured hydration. Patients are then seen for a one hour psychosocial evaluation and provided with targeted recommendations for adherence to their medical regimen and emotional and behavioral issues that may be related to coping with their medical condition. Behavioral Assessment System for Children 2nd Edition (BASC-2), a measure that evaluates a broad range of internalizing, externalizing, and adaptive functioning difficulties in children, is also given during these visits. Additionally, patients’ psychosocial functioning in school is assessed with teacher report. Results: One hundred seventy-one patients (67% male), were seen every 3 months to yearly leading up to surgery. Common medical issues addressed include evaluation emptying capabilities, pelvic floor strength and relaxation, and constipation management. Common behavioral issues addressed include compliance with medical regimens, anxiety about surgery, wearing pull-ups, disclosure, pain, and bodily changes, and mood and other behavioral issues that may be impacting treatment. Conclusions: An interdisciplinary approach to preparation for outlet procedures has led to more comprehensive care of BEEC patients. We are able to evaluate and intervene earlier with issues that may impact post-surgical outcomes. Involvement in our clinic has been associated having continence surgery at later ages, once maturity and adherence are heightened and psychological issues are better managed. Post continence surgery challenges (e.g. adherence) have been lessened because of this intense preparation. Future research will examine involvement in our program and empirical data related to continence success and complications post-surgery.
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