Scoping review of neurogenic bladder patient‐reported readiness and experience following care in a transitional urology clinic

Abstract

To generate a scoping review that summarizes thematically on all reported patient perceptions on readiness and experiences during transitional urologic care for patients with neurogenic bladder and or congenital genitourinary conditions that require continuity of care into adulthood.Methods: A systematic literature search was performed in October 2021. Records were screened and identified for studies relevant to reported readiness and experience in urologic transitional care among patients needing life-long urologic care. The methodological quality of the cross-sectional studies was assessed using AXIS. The included studies were clustered according to patient readiness in transition and patient experience-satisfaction in the urologic transition process. This scoping review was part of a systematic review registered on PROSPERO CRD42022306229 and was conducted in compliance with the PRISMA extension for scoping reviews.Results: A total of 12 articles were included that assessed patients with neurogenic bladder that reported either readiness or patient experience following the transitional care process. The patient readiness was assessed in six studies, determined using the TRAQ score with a range of 3-4/5. Older age, high health literacy, and parental or families' transition process awareness were associated with readiness. Generally, patients experience better satisfaction with pediatric care than with adult care facilities. Most patients felt that sexuality and fertility were not adequately tackled during the transition. The reported barriers to successful transition were patient, provider, and system factors, including lack of insurance coverage/financial management, patient preference, long-term bond with the pediatric providers, and communication by the adult provider. Based on AXIS, all of the studies identified for this scoping review did not determine the sample size, and most of the studies did not categorize the responders, which could introduce bias to the interpretation of their results.

A cross-sectional analysis of paediatric urologists’ current practices, opinions and areas of perceived importance in the delivery of adolescent & transitional care

“…This study suggests that despite the abundance of data pertaining to the importance of long-term specialist surveillance and the broad consensus on the need for multidisciplinary clinics from early teenage years across a number of conditions, there remains little agreement regarding how this should be carried out. A recent scoping review from Toronto demonstrated that most adolescent patients felt that sexuality and fertility were not adequately tackled during the transition phase, with reported barriers to successful transition including patient, provider, and system factors, including a lack of insurance coverage/financial management, patient preference, trust and communication with the adult provider [23]. This is broadly in line with the findings of this study in that these questions should be addressed during this time.…”

Exploring lifelong overactive bladder: Transitions, evidence, and clinical implications; A modified Delphi process

“…The inclusion of temporality into OAB also enables the formulation of transitions in care within this framework. This concept is observed to be emerging notably in the context of neurogenic LUTS 45 . An analogy can be drawn between the transitions in OAB phenotype, from childhood to adulthood and from elderly to frail elderly.…”

“…This concept is observed to be emerging notably in the context of neurogenic LUTS. 45 An analogy can be drawn between the transitions in OAB phenotype, from childhood to adulthood and from elderly to frail elderly. In both scenarios, there is a shift between a patient-centered and healthcare-centered system, along with shifts in the perception of disease ownership, understanding of the medical condition, and awareness of available therapeutic approaches.…”

Pediatric Bowel Management Options and Organizational Aspects

“…They can experience recurrent urinary tract infections (34–70%), urinary incontinence (46–52%), CKD (20%), and other urologic concerns [ 66 , 73 ]. Urologic care transition was shown to decrease the use of emergency services [ 74 ]; however, it is currently associated with a lower satisfaction rate when compared to pediatric urology care [ 75 ], confirming the need for further improvements.…”