Sexual identity and orientation in adult men and women with spina bifida

1. Introduction

As children born with spina bifida (SB) are increasingly more likely to become adults with SB [1, 2], adult concerns regarding sexual health have become more commonplace [3, 4, 5]. SB affects multiple organ systems, including mobility and the lumbosacral innervation of sexual organs. Unfortunately, sexuality and reproduction are often poorly managed areas in the lives of adults with SB. A tendency to ignore issues of sexuality by healthcare professionals may exist, leading to an adoption of an asexual stance that infantilizes this population [6]. Dependence on caregivers and lack of data to guide counseling and clinical decision-making likely play a role. In fact, basic sexual characteristics of adults with SB have not been explored beyond a single center series [7]. We aimed to determine sexual identity and orientation in adults with SB. We hypothesized that sexual characteristics of adults with SB mirror the general population and few identify themselves as asexual.

We administered an anonymous, international online survey to men and women ⩾ 18 years old with SB over a 10-month period (June 2016–March 2017). Participants were recruited at SB clinics and through local, national and international SB organizations via social media (Acknowledgements). We collected data on demographics, surgeries, sexual identity and orientation. Partially answered questionnaires (30) were not analyzed. Since no identifiable information was collected, we could not verify how many participants with incomplete questionnaires subsequently submitted a completed one (IRB 1604694710). Study data were managed using REDCap, a secure web-based platform [8].

Participants were grouped as men and women based on their answer to the question: “I was born: male, female.” Sexual identity, or gender, was assessed with 4 options: female, male, transgender and other, as recommended by Reisner et al. [9]. Sexual orientation was assessed with 5 options: straight/heterosexual (not gay); gay, lesbian, or homosexual; bisexual (I am attracted to both men and women); asexual (I am not sexually attracted to others), other (with free text for a description). A similar classification was used in the 2009 National Survey of Sexual Health and Behavior of the United States population [10].

The authors, including an adult and adolescent sexuality expert (DJH), prepared a pilot questionnaire. It was reviewed by 3 additional pediatric urologists and 2 nurse practitioners regularly treating adults with SB (Acknowledgements). Items were reworded for comprehension and clarity after feedback from 2 men and 5 women with SB (median age 30 years old) and a Health Literacy Educator (Acknowledgments). Readability was grade 7 on the Flesch Kincaid Grade Level test [11].

Analysis involved Mann-Whitney U tests for continuous data and Fisher’s exact tests for categorical data ( p = 0.05, Stata 10.1).

3. Results

In the first large, international study of sexual characteristics of adults with SB, we report that the vast majority of adults with SB identify their gender consistent with their biological gender. Their sexual orientation appears to mirror the general population based on national statistics. Only 0.5% of adults with SB identify as asexual, underlining that asexuality occurs rarely both in adults with and without SB. Since participation was voluntary, and not probability-based, our findings do not represent true prevalence in the SB population. Statistical comparisons with national references would not be reliable. Rather, our results characterize general patterns.

While several studies of adults in the United States describe sexual identity and sexual orientation in the general population [12, 13], no similar work has been published in SB. Two large studies in the United States estimated prevalence of sexual identity other than biological gender at up to 0.3–0.5% [12, 13]. Similarly, nearly all adults with SB in this study reported sexual identity consistent with biological gender.

Heterosexual sexual orientation has been reported by 93–97% of the general population, with 2–3% identifying as gay/lesbian, 0.2–3% bisexual and 0.2–2% other [10, 14]. Similarly, in our study, adults with SB typically identified as heterosexual, with a significant minority reporting different sexual orientations. This is consistent with findings of the only study of adults with SB reporting sexual orientation: 95% of 22 men with SB and 83% of 24 women followed at one Japanese center reported sexual attraction to the opposite sex [7].

Men with SB in our study were more likely to report gay rather than bisexual sexual orientation, similar to the general population [10, 14]. On the other hand, women with SB reported bisexual rather than lesbian sexual orientation more often. This pattern was observed in some population studies [10], but not others [14].

Comprehensive care to adults with SB involves the challenging management of acute and chronic issues of urinary and fecal incontinence, kidney and bladder stones, urinary tract infections, worsening renal function, pain, skin breakdown, mobility, and complications related to previous surgeries, against an ever changing landscape of personal, social and financial resources. It is becoming clear that sexuality is an important part of life of many adults with SB. Currently, attention to sexuality plays a minor, if any, role in their care [3]. Our data highlight that adults with SB identify themselves as sexual beings, with sexual characteristics mirroring the general population. Therefore, we strongly believe that the sensitivity and attention given to matters of sexuality among patients without SB should also be applied to those with SB.

The current study has several strengths. Voluntary, anonymous, online participation was used to maximize the reliability of provided answers. Study questions were developed by an interdisciplinary panel of experts and adults with SB. We surveyed a heterogeneous, international population. Similar to other large SB studies, most study participants were female, half were shunted and half were community ambulators [15, 16, 17]. Two thirds of participants of the United States National Spina Bifida Patient Registry (NSBPR) are shunted and half are community ambulators [18]. This suggests our findings may be generalizable to the larger SB population.

The wording of questions and answer options can potentially introduce bias, making comparisons between studies using different methodology challenging, if not impossible. In an effort to minimize this risk, we adopted definitions previously used in multiple sexuality studies [9, 10].

The largest limitation of this study is potential self-selection bias. Due to voluntary online participation, those with internet access who were most motivated, most interested in sexuality and had fewest functional limitations were most likely to participate. The degree of bladder dysfunction was presumably lower in our study population compared to the NSBPR, with 44% versus 76% performing clean intermittent catheterizations [19]. Our participants were also independent. Every person performing clear intermittent catheterizations did so independently. In addition, 41% of participants aged ⩾ 25 completed post-secondary education, twice the 19% in the NSBPR [19]. This may be because adults in this study had more time to accomplish their educational goals, as our study participants were, on average, 8 years older than those in the NSBPR (Liu, T., personal communication). In addition, there were relatively few international participants. Finally, it remains impossible to verify how many participated with someone else’s assistance. Yet, due to the sensitive nature of this study, we do not suspect assistance to have been significant.

5. Conclusions

Adults with SB consider themselves sexual beings. As in the general population, sexual identity of adults with SB typically coincides with biological gender. Sexual orientation of adults with SB appears to mirror the general population based on national statistics. Asexuality is very rare. This novel data underline the importance of integrating sexuality and sexual health into comprehensive SB care.