Identify developmentally appropriate tools for involving adolescent patients in their own continence-surgery decision-making.
Patient interactions involving two or more patients with bladder exstrophy were conducted with scripted and unscripted scenarios about the risks and benefits of surgery. All patients and their parents (if appropriate) were consented prior to the interaction. All interactions involved patients with urinary incontinence who rejected surgical correction and patients who had completed surgery with or without attaining full continence. Thirty-four patients were grouped from 2 to 12 per group, initial groups being 1:1 but with gradual increase in group size, with experience. Age ranged from 12 to 26 years. Fourteen were incontinent of urine without surgery, while 20 had prior surgical correction with varying degrees of satisfaction with attained-continence. Patient satisfaction with this approach was elicited with a Likert 5-point scale, 1 = very dissatisfied (unhappy or uncomfortable) to 5 = very satisfied (happy) with the interactions. One group was videotaped.
Young adolescent patients with exstrophy can be very resistant to the idea of surgery, and parents often succumb to their decisions. After group interaction, however, 13 of the 14 incontinent patients decided to proceed with surgery. Scripted approaches, attempted initially, were nonetheless dominated by unscripted interactions and were abandoned for unscripted but supervised interactions. Satisfaction with the group interactions was scored 4-5 by each patient with no difference by group size.
Pediatric urology clinics often seek to identify when a patient with bladder exstrophy is "ready" for continence-surgery. However, valid developmentally appropriate guidelines for such decision-making are unknown. Our study demonstrates that young adolescent patient decision-making about surgery was positively influenced after interacting with fellow adolescent patients who had prior surgery, despite some reservations expressed by some of the former patients. Use of such patient interactions appears to reduce adolescents' anxiety and reluctance about surgical interventions. Videos of such groups might also be beneficial.