Browsing by Author "Wiener, John S."

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    Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study
    (IOS Press, 2023) Szymanski, Konrad M.; Adams, Cyrus M.; Alkawaldeh, Mohammad Y.; Austin, Paul F.; Bowman, Robin M.; Castillo, Heidi; Castillo, Jonathan; Chu, David I.; Estrada, Carlos R.; Fascelli, Michele; Frimberger, Dominic C.; Gargollo, Patricio C.; Hamdan, Dawud G.; Hecht, Sarah L.; Hopson, Betsy; Husmann, Douglas A.; Jacobs, Micah A.; MacNeily, Andrew E.; McLeod, Daryl J.; Metcalfe, Peter D.; Meyer, Theresa; Misseri, Rosalia; O'Neil, Joseph; Rensing, Adam J.; Routh, Jonathan C.; Rove, Kyle O.; Sawin, Kathleen J.; Schlomer, Bruce J.; Shamblin, Isaac; Sherlock, Rebecca L.; Slobodov, Gennady; Stout, Jennifer; Tanaka, Stacy T.; Weiss, Dana A.; Wiener, John S.; Wood, Hadley M.; Yerkes, Elizabeth B.; Blount, Jeffrey; Pediatrics, School of Medicine
    Purpose: This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD. Methods: A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics. Results: Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%). For 261 shunted individuals, leading COD were neurological (21%) and pulmonary (17%), and leading MOD were infections (34%, including shunt infections: 4%) and non-infectious shunt malfunctions (14%). For 32 unshunted individuals, leading COD were pulmonary (34%) and cardiovascular (13%), and leading MOD were infections (38%) and non-infectious pulmonary (16%). COD and MOD varied by shunt status and age (p < = 0.04), not ambulation or birthyear (p > = 0.16). Urology-related deaths (urosepsis, renal failure, hematuria, bladder perforation/cancer: 10%) were more likely in females (p = 0.01), independent of age, shunt, or ambulatory status (p > = 0.40). COD/MOD were independent of bladder augmentation (p = >0.11). Unexplained deaths while asleep (4%) were independent of age, shunt status, and epilepsy (p >= 0.47). Conclusion: COD varied by shunt status. Leading MOD were infectious. Urology-related deaths (10%) were independent of shunt status; 26% of COD were unknown. Life-long multidisciplinary care and accurate mortality documentation are needed.
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    Sexual activity and function of adult men with spina bifida
    (Elsevier, 2023-06) Szymanski, Konrad M.; Roth, Joshua D.; Hensel, Devon J.; Wiener, John S.; Younsi, Nina; Stein, Raimund; Whittam, Benjamin; Kaefer, Martin; Rink, Richard C.; Cain, Mark P.; Misseri, Rosalia; Urology, School of Medicine
    Objective Data on sexual function of men with spina bifida (SB) is limited. We aimed to assess sexual activity and erectile dysfunction (ED) in a large international sample of men with SB. Methods Men with SB (≥18yo) were recruited in an international online survey via clinics and social media. We collected data on demographics, ambulation (Hoffer classification), penile rigidity (Erection Hardness Score), sexual activity and ED (International Index of Erectile Function). Non-parametric tests were used. Results A total of 162 men (median age 35, 62% shunted, 38% community ambulators) reported sexual desire similar to the general population (p = 0.82), but 55% were dissatisfied with their sex life (Summary Table). Overall, 36% reported full penile rigidity with erections, more commonly with better ambulation (p = 0.01), 69% had ever experienced orgasm and 84% ejaculated. In 44 men (27%) attempting sexual intercourse in the last 4 weeks, 59% had ED (11% severe, 7% moderate, 14% mild-moderate, 27% mild). In this group, 91% of men reporting less than full penile rigidity had ED, compared to 30% with full penile rigidity (p = 0.001). Overall, partnered non-genital contact in the last 3 months was reported by 56%, solo masturbation: 62%, partnered intercourse: 48% (31% vaginal). Of 54 men who used phosphodiesterase type 5 inhibitors (PDE5I), 80% reported improved erections, 56% improved intercourse. Overall, 40% reported non-genital erogenous zones as most pleasurable, especially with poorer ambulation (p = 0.002, chest/nipples: 73%). Comment Strengths of this study include anonymous, voluntary, online participation maximizing participation of a heterogenous, international population. Whenever available, we compared findings to published values for the general population. Since romantic and sexual activity is a complex intersection of interest, opportunity and ability, a more comprehensive assessment was beyond the study's scope. Future work will focus on the interplay with issues like incontinence. Conclusions ED was frequent among men with SB, especially in men with poorer ambulation. PDE5 inhibitors may be beneficial. Partnered sexual activity was reported by half of the men, although it may not involve penetrative intercourse.
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    Solo and Partnered Sexual Behavior Among an International Sample of Adults with Spina Bifida
    (Oxford, 2022-12) Hensel, Devon J.; Misseri, Rosalia; Wiener, John S.; Roth, Joshua D.; Whittam, Benjamin M.; Cain, Mark P.; Szymanski, Konrad M.; Pediatrics, School of Medicine
    Background Spina bifida (SB) may differentially impact adults’ participation in solo and partnered sexual behaviors, but little research investigates this topic. Aim Describe solo and partnered sexual behaviors among an international sample of adult men and women with SB. Main Outcome Measures Ever participated (no/yes) and recent participation (>1 year ago/within last year) in solo masturbation, cuddled with a partner, held hands with a partner, kissed a partner, touched a partner's genital, had genitals touched by a partner, gave a partner oral sex, received oral sex from a partner, vaginal sex, anal sex, and sex toy use. Methods Data were drawn from a larger cross-sectional, internet-based survey assessing the sexual behaviors of an international sample of men and women with SB. We used logistic regression to examine the impact of background (gender, age, independent living, and relationship status) and health (shunt status, ambulation, and genital sensation) factors on each outcome. Results The sample consisted of 345 respondents aged 18–73 years from 26 nations. Very few (<3%) had no lifetime experience with any solo or partnered behaviors; 25.0% reported participating in all behaviors at some point in their lives. The median number of past year sexual behaviors (of 16 total) was 7. Lifetime and recent participation were associated with demographic and health factors. Clinical Implications Despite impairment, adults with spina bifida do participate in solo and partnered sexual behaviors. Medical personnel who work with this population should include discussions about sexuality as part of routine care. Strengths & Limitations Although this research measured solo and partnered sexual behavior in large international sample of adults with spina bifida, it is limited by its cross-sectional retrospective design and non-clinical convenience sample. Conclusion Despite disability, many adults with SB participate in solo and partnered sexual behavior. Medical and psychosocial supports are needed to help adults in this population enjoy sexuality in a healthy and safe manner.