BACKGROUND: Urinary continence is a main goal of bladder exstrophy (BE) care. In the high-income countries of N. America, bladder neck reconstruction or enterocystoplasty with or without continent catheterizable urinary stoma are considered first-line treatment options. However, these options are less suitable in low- and middle-income countries (LMICs) due to often limited access to clean water, durable medical consumables and continence supplies, emergency facilities, and transportation, among others. This paper provides a tool for assessing the psychosocial and environmental circumstances that must be considered as well as a decision-aid pathway to guide providers, patients, and families in selecting an appropriate urinary continence procedure to manage bladder exstrophy in one East African country.
METHODS: The Association for the Bladder Exstrophy Community’s (A-BE-C) African Exstrophy Outreach Initiative (AEOI) partnered with 3 non-profit institutions to conduct site visits with the intention of understanding the needs and resource constraints of Ugandan patients with bladder exstrophy. In conjunction with the EMERGENCY Children’s Surgical Hospital (CSH) Entebbe’s physician/surgeon, nursing, social work, psychology, and supply chain staff, several Plan-Do-Study-Act (PDSA) cycles were conducted to develop, iterate, and improve the psychosocial assessment tool and decision-aid pathway.
RESULTS: As an outcome of the partnership and PDSA cycles, a list of components for assessing psychosocial circumstances, the home, school, and family environment and challenges, and other considerations that are relevant to exstrophy management in Uganda was developed (Table 1). We also developed a decision-aid pathway that A-BE-C AEOI and CSH Entebbe’s teams can use with patients-families to determine which urinary diversion option(s) is/are suitable.
Incontinent urinary diversion options include a) simple cystectomy with ileal conduit, and b) ileal chimney onto a closed BE with a bladder neck transection or a very tight bladder neck reconstruction. Continent urinary diversion options include a) simple cystectomy with ureterosigmoidostomy, b) bladder neck reconstruction with or without continent catheterizable urinary channel, and c) enterocystoplasty with or without continent catheterizable urinary channel. Figure 1 displays this algorithm and the important pros and cons of each option. Once an individual patient’s options are known, an in-depth discussion of each surgical option is undertaken. This includes culture-sensitive education and counseling, with the ultimate choice selected by the patient-family. Consent (and assent) is/are then obtained. Importantly, if a patient-family is assessed to be not eligible for continence surgery, they are provided with appropriate psychosocial interventions and later re-evaluated for readiness.
CONCLUSIONS:
We present the details of the psychosocial assessment needed and a decision-aid pathway to assist in selection of urinary continence procedures available for people with BE in Uganda. To our knowledge, this is the first algorithm detailing a BE urinary continence strategy applicable in LMICs.
