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

Abstract

PURPOSE:

Sexuality has received little attention in spina bifida (SB) care. The aim of this study was to assess sexual identity and orientation in adults with SB.

METHODS:

An international online survey to adults with SB was administered over 10-months (recruitment: SB clinics, SB organizations via social media). Collected data included demographics, sexual identity and orientation. Non-parametric tests were used for analysis.

RESULTS:

Median age of 77 men and 119 women was 35 years old (52.0% shunted, 48.5% community ambulators, 42.3% outside United States). Most commonly, men identified as male (96.1%), while 1.3% each described themselves as female, transgender and other. All women reporting sexual identity identified as female (99.2%), 0.8% not providing an answer. Most men reported heterosexual orientation (89.6%), followed by gay (7.8%) and bisexual (2.6%). Most women reported heterosexual orientation (84.9%), followed by bisexual (10.4%), gay/lesbian (2.5%), asexual (0.8%) and other (1.7%).

CONCLUSION:

As in the general population, sexual identity typically coincides with biological gender. Sexual orientation of adults with SB mirrors the general population. Due to self-selection, these findings likely do not reflect exact prevalence in the SB population.

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.

Table 1

Population characteristics

Variable	Men ( $n=$ 77)	Women ( $n=$ 119)	p-value
Age (median, IQR)	35 (30–43)	35 (27–43)	0.46
Ventriculoperitoneal shunt	46 (59.7%)	56 (47.1%)	0.14
Community ambulators	24 (31.2%)	71 (59.7%)	$<$ 0.0001
Completed post-secondary education among those $⩾$ 25 years old	25 (34.7%)	48 (48.5%)	0.045
Live in the United States	46 (59.7%)	67 (56.3%)	0.66
Clean intermittent bladder catheterizations	33 (42.9%)	54 (45.4%)	0.77

2. Methods

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

3.1 Participant characteristics

Median age of 77 men and 119 women was 35 years old (IQR: 29–43, range 19–73). Half of the participants had a ventriculoperitoneal shunt (52.0%) and 48.5% were community ambulators. Of the 44.4% of adults managing their bladders with clean intermittent catheterizations, all did so independently. Overall, 41.5% of those $⩾$ 25 years old completed post-secondary education. Men and women had similar age, shunt status, bladder management and country of origin ( $p⩾$ 0.14, Table 1). Women were more likely to be community ambulators and complete post-secondary education ( $p<$ 0.0001 and 0.045, respectively).

Adults from the United States (57.7%) lived in 36 states. Others lived in the United Kingdom (13.8%), Canada (7.1%), New Zealand (4.1%), Australia (3.1%), Turkey (2.0%), Belgium (1.5%), Ireland (1.0%), Pakistan (1.0%), Algeria, El Salvador, Indonesia, Italy, Japan, Kenya, Kuwait, Maldives, Netherlands, Nigeria, Norway, Portugal, South Africa, Sweden and Tanzania (0.5% each).

3.2 Sexual identity

Most men identified themselves as male (96.1%), 1.3% described themselves as female, 1.3% as transgender and 1.3% as other (Table 2). All reporting women indicated their sexual identity as being female (99.2%), with 0.8% not providing an answer. Differences in reported sexual identity other than biological gender between men and women did not reach statistical significance ( $p=$ 0.06). Differences between responses from men or women from the United States or internationally were not statistically significant ( $p⩾$ 0.35).

Table 2

Sexual identity reported by adults with spina bifida

Sexual identity	Men ( $n=$ 77)	Women ( $n=$ 119)
Male	74 (96.1%)	0 (0.0%)
Female	1 (1.3%)	118 (99.2%)
Transgender	1 (1.3%)	0 (0.0%)
Other	1 (1.3%)	0 (0.0%)
No answer	0 (0.0%)	1 (0.8%)

3.3 Sexual orientation

Most men reported a heterosexual orientation (89.6%), followed by gay (7.8%) and bisexual (2.6%) (Table 3). Most women reported a heterosexual orientation (84.9%), followed by bisexual (10.1%), gay/ lesbian (2.5%), asexual (0.8%) and other (demisexual, person who does not experience sexual attraction without a strong emotional connection first, and not sure, 0.8% each). Men were more likely to report gay orientation while women more likely to report bisexual orientation ( $p=$ 0.03). Differences between responses from men or women from the United States or internationally were not statistically significant ( $p⩾$ 0.40).

Table 3

Sexual orientation reported by adults with spina bifida

Sexual orientation	Men ( $n=$ 77)	Women ( $n=$ 119)
Heterosexual	69 (89.6%)	101 (84.9%)
Gay or lesbian	6 (7.8%)	3 (2.5%)
Bisexual	2 (2.6%)	12 (10.1%)
Asexual	0 (0.0%)	1 (0.8%)
Other	0 (0.0%)	2 (1.7%)*

*Other: demisexual (1), not sure (1).

4. Discussion

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.