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Preparing Adolescent Spina Bifida Patients for Adulthood: Analysis of Sexual Function
Jessica T. Casey, MS, MD1, Alyssa Greiman, BS1, Benjamin Kester, BS1, Ashima Singal, BS1, Shubhra Mukherjee, MD2, Stephanie J. Kielb, MD1.
1Northwestern University, Chicago, IL, USA, 2Rehabilitation Institute of Chicago, Chicago, IL, USA.
Introduction: As we prepare adolescents with spina bifida (SB) for the transition into adulthood, we need to provide them with accurate data on the adult sexual function of this population.
Materials & Methods: Adult SB patients completed RAND 36-Item Health Survey v2 (modified as needed for non-ambulatory patients) (SF-36), Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire (PISQ-12), Female Sexual Function Index (FSFI), and International Index of Erectile Function (IIEF).
FEMALE: Response rate was 31.1% (42/135). Demographics: mean age 31.2 years; 71.4% primarily ambulatory, 28.6% use a wheelchair. Nine female patients (21.4%) are not sexually active. Average PISQ-12 Global Score (higher score reflects worse function, maximum possible score: 48) was 18.36. PISQ-12 Global Score varied significantly with history of urologic reconstruction (27.57 with reconstruction vs. 16.34 without, p=0.001) and bladder management technique (14.57 voiding,* 17.36 intermittent catheterization, 24.50 indwelling catheter, 36.00 ileal conduit,* 19.67 diapers; *p<0.05), but not ambulatory status. Average FSFI Full Score was 13.16 (lower score reflects worse function, maximum possible score: 36). Neither FSFI Full Score nor individual domains varied with urologic reconstruction or bladder management. Ambulatory patients demonstrated better FSFI Full (15.87 vs. 6.25, p=0.028), Desire (3.28 vs. 1.96, p=0.022), Arousal (2.54 vs. 0.74, p=0.043), Orgasm (2.06 vs. 0.36, p=0.029), and Lubrication Scores (2.73 vs. 1.20, p=0.044) compared to those in wheelchairs. Additionally, FSFI Desire Score significantly correlated with SF-36 Physical Functioning Score (r=0.341, p=0.034).
MALE: Response rate was 22.3% (21/94). Demographics: mean age 34.5 years; 71.4% primarily ambulatory, 28.6% use a wheelchair. Three patients (14.3%) were not sexually active, and six (28.6%) did not have a current partner. Average IIEF Summary Score was 21.62 (standard deviation 18.90, maximum possible score: 75). Average IIEF-5 Score (reflecting erectile dysfunction (ED)) was 10.24 (standard deviation 8.93, maximum possible score: 30); 11.8% had no ED, 5.9% mild ED, 29.4% mild to moderate ED, 11.8% moderate ED, and 41.2% severe ED. None of the IIEF domains (Erectile Function, Orgasmic Function, Sexual Desire, Intercourse Satisfaction, Overall Satisfaction, Summary Score) varied with respect to urologic reconstruction, bladder management or ambulatory status. IIEF Orgasmic Function significantly correlated with SF-36 Mental Health Score (Spearman correlation r=-0.443, p=0.044). However, the remainder of the IIEF domains did not correlate with any SF-36 domains.
Conclusion: The majority of adults with SB in our cohort are sexually active. In our female adult SB population, sexual function is significantly affected by multiple aspects of SB (ambulatory function, bladder management technique, urologic reconstruction). In our male adult SB population, there is a wide range of sexual function; however, the effect of sexual function on overall quality of life is unknown. Further study on sexual function satisfaction is warranted in order to better counsel adolescent spina bifida patients on what to expect in adulthood.
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