Sexual function in adult patients who have undergone augmentation surgery in childhood: what is really important?

Spina bifida (SB), an incomplete closure of the neural tube, affects 3.5 per 1000 live births globally. Improved survival rates mean a significant number of children with SB now reach adulthood. Untreated urological problems in SB patients can lead to kidney damage, emphasizing the importance of early management strategies, such as clean intermittent catheterization (CIC), to maintain low bladder pressure and protect the urinary tract. Augmentation cystoplasty (AC) is a surgical intervention to improve continence and preserve renal function, indicated when conservative treatments fail. The transition from pediatric to adult care presents challenges for both patients and clinicians, particularly regarding sexual health, an area with limited research. This study aimed to assess the current state of care by gathering expert opinions and the perspective of a patient group representative.

Existing literature sparsely addresses the sexual function of adult SB patients who underwent AC during childhood. Studies on quality of life (QoL) in this population are limited. While some studies using the International Index of Erectile Function report high rates of erectile dysfunction (ED), the data on sexual health following AC is largely anecdotal. The impact of stoma incontinence and scar cosmesis on sexual function is also understudied. The lack of validated instruments to assess QoL and sexual life in SB patients further hinders research in this area.

This qualitative study involved a mixed-methods approach. Four experts in pediatric urology, identified through a literature review and expert group discussions within the European Association of Urology Young Academic Urologists, were contacted via email and provided written responses to a series of questions. A patient group representative, a mother of a young woman with SB and a long-time patient advocate, participated in a telephone interview. Her answers were transcribed and translated. The questions explored the prevalence of sexual difficulties in male and female patients following AC, the impact of stoma incontinence and scar cosmesis on body image and sexual activity, and specific concerns regarding fertility and recurrent urinary tract infections (UTIs) in females. Ethical approval was obtained from the local ethics committee.

Experts and the patient representative agreed that incontinence significantly impacts sexual function in SB patients. While urinary diversion improves sexual life by addressing incontinence, the exact proportion of patients experiencing sexual difficulties remains unclear due to limited data. The cosmetic appearance of stomas and scars affected female patients more than males. Female patients prioritized a stable relationship over the impact of surgical interventions or incontinence on their sex lives, whereas males reported greater shame and reluctance to address these concerns. Fertility is generally not severely impaired, but contraception and folic acid use before conception need emphasis. Recurrent UTIs are a concern in women, and measures like CIC after intercourse and antibiotic prophylaxis are frequently recommended. There's a notable difference in perception between genders on the burden of incontinence, with men experiencing more shame.

This study highlights the under-recognized sexual health challenges faced by adult SB patients after AC. Incontinence significantly impacts sexual function, underscoring the importance of early and effective management of urinary issues. While urinary diversion can improve sexual function, additional factors such as body image, self-esteem, and societal perceptions play crucial roles. The difference in the perception of the burden of incontinence between men and women warrants further investigation. The study emphasizes the need for open communication between clinicians and patients regarding sexual health, promoting better self-confidence and improving QoL.

This qualitative study emphasizes the need for improved care and research focusing on sexual health in adult SB patients who have undergone augmentation cystoplasty. Routine inquiries about sexual concerns during postpubertal visits are crucial. Further research using validated PROMs is needed to quantify the prevalence and impact of sexual dysfunction, leading to more effective interventions and improved patient-centered care. Future studies should address gender-specific concerns and explore the role of body image and self-esteem.

The study's limitations include its small sample size and qualitative nature. The expert opinions and patient representative's perspective, while valuable, do not represent the entire patient population. The lack of quantitative data limits the generalizability of the findings. Further research involving larger, more diverse patient cohorts is needed to confirm these observations and quantify the impact of various factors on sexual function in this population.