Table 2.

International Index of Erectile Function Total Score and Domain Scores for those who completed the measure in full (N=14). A higher score represents better function or greater satisfaction. Representative quotations depict ways in which the measure may adequately and poorly capture an individual’s experience.

IIEF Domain and Median Score of Study Participants (IQR)	Example Items from IIEF Domain	Adequately Captures	Poorly Captures
Erectile Function (range 1-30)a 8 (3.0-23.8)	How often were you able to get an erection during sexual activity? During sexual intercourse, how difficult was it to maintain your erection to completion of intercourse? How do you rate your confidence that you could get and keep an erection?	Ability to maintain an erection: “They go up and they stay up until I’m done and then they go down.” P17, 18yo “I personally can’t maintain an erection. For more than a minute, a minute maybe.” P11, 28yo Confidence achieving an erection: “I can achieve like some sort of degree of an erection but it’s not something that…is very satisfying…like I wish I was able to achieve more of it.” P4, 19yo	Poor understanding of terminology: “Q: How happy are you with your erections? A: Uh well, I don’t think I’ve really had one.” Q: Do you know what that means? A: I think so, although maybe yeah explain it again.” P1, 22yo Unpredictable nature of erections: “They happen when I don’t want them to and they don’t happen when I want them to.” P4, 19yo “Although they happen, I don’t know when they happen…only way I know if they happened, is if I looked down and it’s there.” P10, 20yo Poor penile sensation impairs erections: “I don’t have that sensation…nobody’s just going to grab ahold of it and it’s just gonna…stand at attention.” P15, 28yo
Orgasmic Function (range 1-10) 2.5 (0-7.8)	When you had sexual stimulation or intercourse, how often did you ejaculate? When you had sexual stimulation or intercourse, how often did you have tile feeling of orgasm or climax?	Unable to ejaculate: “I haven’t reached the point of ejaculation but I have reached that point of the – of that climax… it’s a rare instance.” P13, 21yo Unable to orgasm: “If it were to happen, it’d be a miracle…I’ve never experienced it.” P10, 20yo “I don’t necessarily feel an orgasm when I masturbate or when I’m having sex.” P5, 28yo Able to orgasm/ejaculate: “Yeah, I’m able to experience that. I’m pretty happy about it…when I masturbate.” P6, 19yo	Poor understanding of terminology: “I can’t really tell what that experience truly is…I just don’t fully understand the topic.” P7, 19yo Unpredictable nature of ejaculation/orgasm: “I’ll be like walking down the street and all of a sudden I’ll feel it, um but it’s never when I masturbate or have sex, you know, it’s always at random times.” P5, 28yo Pain with orgasm: “There have been a few times where it’s just unbearable pain…I think it has something to do with my bladder” p17, 18yo Incontinence with ejaculation: “Every time I masturbate, there will be at least…a stream of pee that will…come out.” P6, 19yo
Sexual Desire (range 2-10) 7.5 (4.5-8.8)	How often have you felt sexual desire? How would you rate your level of sexual desire?	Lack of desire: “I actually never had sex before…it’s never been something that I’ve desired.” P20, 26yo Some desire: “It’s like the thrill of it…I just want to…experience it from time to time.” P6, 19yo Strong desire: “Yeah physical intimacy is probably very important to me.” P16, 29yo	Lack of hope affecting desire: “Um, sex-wise…pretty interested. But again, I think I’m a lost ‘cause so it doesn’t matter that much.” P7, 19yo Focus on non-partnered experiences: “In like intercourse, I’m not really interested in that yet… just exploring someone else’s body would uh, I’m interested in like, but nothing more than that.” P4, 19yo
Intercourse Satisfaction (range 0-15) 0 (0-7.5)	How many times have you attempted sexual intercourse? When you attempted sexual intercourse, how often was it satisfactory for you? How much have you enjoyed sexual intercourse?	Intercourse experience: “Q: What opportunities have you had to be sexually active? A: Um, not really any.” P22, 25yo Overall satisfied: “I don’t think I have anything particularly negative to say about it if I’m being honest.” P8, 26yo	Sensation altering satisfaction: “One reason I don’t like to have sex is ‘cause I…don’t have great sensation down there…so I won’t feel myself ejaculate.” P5, 28yo Nerves affecting satisfaction: “It felt good for a bit, but then…I was just like…I don’t think I can do this, um, I’m pretty nervous.” P3, 20yo Experience outside of 4-week timeframe: “I’ll say like two months ago, I experienced oral sex for the first time.” P10, 20yo
Overall Satisfaction (range 2-10) 5 (2.5-6.0)	How satisfied have you been with your overall sex life? How satisfied have you been with your sexual relationship with your partner?	Poor satisfaction: “Pretty unsatisfied. I mean like, I just don’t get that pleasure.” P2, 18yo “I’m a people pleaser, so it like bothers me that I can’t always satisfy a woman.” P11, 28yo Overall content with sexual function: “When I, I’m doing this solo, um I’m finishing, I’m starting and finishing so.” P17, 18yo	Not satisfied due to unpredictable function: “The fact that I…can’t really do what I want when I want it to happen is something that bothers me quite a lot.” P4, 19yo No partnered experiences: “Even though I haven’t had sex before…I don’t think it would be a big issue for me.” P20, 26yo Difficulty finding a partner: “I’ve never been in a stable enough relationship…the opportunity just really hasn’t presented itself.” P10, 20yo “You know they don’t want somebody that has spina bifida…they’ll have a few experiences and be like, well this isn’t quite for me.” P15, 28yo
Total Score (range 6-75) 26.5 (11.3-49.3)

^a.Severity of erectile dysfunction (ED) classified as: no ED (EF score 26 to 30), mild (EF score 22 to 25), mild to moderate (EF score 17 to 21), moderate (EF score 11 to 16), and severe (EF score 6 to 10)¹⁵