Long-term outcomes in primary male epispadias

Purpose: The authors present a case series of 30 male patients who presented with primary epispadias between 1989 and 2002 and looked at their long-term outcomes.

Objectives: (1) What procedures and operations did these patients require following their original surgery? (2) What were their outcomes as adults in terms of continence, cosmesis, and sexual function?

Materials and methods: Primary male epispadias patients who had gone through transition into Adolescent and Adult Urology services were identified retrospectively from electronic patient records.

Results: The authors identified 30 male patients with a median follow-up of 18.5 years. Twenty-four had penopubic epispadias, and six had penile epispadias. All initial surgery took place between 9 and 48 months. Twenty-eight patients needed further surgery over the follow-up period, 26 had surgery for continence, and 12 required revision surgery. At follow-up, 15 patients were continent voiding per urethra, nine patients reported stress leakage with volitional urethral voiding, six patients were using a Mitrofanoff to void, and four of these had an ileocystoplasty. Nineteen patients had documentation on their feelings toward cosmetic outcome; 17 expressed concern. Twenty-one patients had documentation about sexual function; 20 had normal erections with six reporting chordee and nine reporting retrograde ejaculation. No patients were recorded to have fathered any children.

Discussion: There are only a few published studies looking at long-term outcomes of genitourinary reconstruction in primary male epispadias and their sexual function in adulthood. The majority of this patient cohort required surgery to improve their continence and had more than one continence procedure. There is limited data on continence outcomes in the literature with small cohorts and rates varying between 40 and 100% at 10-year follow-up. Despite corrective surgery, nearly all the patients were concerned about their genital appearance. Other studies have shown similar outcomes in terms of patient satisfaction and sexual function. The limitations of this work are that the information was gathered retrospectively from the electronic patient record and validated instruments on outcomes were not used.

Conclusions: The study outcomes will be useful for clinicians who are counseling patients and parents regarding what to expect as adults.