Sexual Functioning in Adolescents and Young Adults With Spina Bifida

Methods 

Study participants were a cohort of adolescents and young adults with spina bifida ages 15 to 35 years old previously followed at Children’s Hospital and Regional Medical Center (CHRMC), Seattle, WA. Identifying data were obtained from the Pediatric Database Management System (PDMS). The PDMS is a large relational database that was started over 50 years ago. It has evolved into a longitudinal demographic, growth, social, clinical, and developmental database collected in a prospective, standardized manner with set definitions and range of allowable values for all variables in the PDMS. The PDMS, in all of its forms (ie, paper and electronic), has been an integral part of patient centered research at CHRMC for the past 50 years.5 Information regarding date of birth, intelligence quotient (IQ), secondary conditions, and hydrocephalus status were extracted from this database.

Six hundred forty potential participants who met the eligibility requirements of age, diagnosis, and an IQ greater than 69 were identified from the PDMS. Questionnaires were mailed to 487 persons for whom complete address information was available. Participants were asked to complete the questionnaires without the assistance of others. A reading screener was included to ensure participants were able to read and understand the questions, which were written at a 5th grade reading level. Questionnaire booklets were returned by 159 adolescents and young adults (32.6%). Thirty-five booklets were unusable because the participants did not pass the reading screener and 3 other questionnaires were incomplete. A total of 121 questionnaires (24.8%) of the sample of 487 persons form the basis of this report. Participants were given $50 as a reward for their participation in the study. All procedures received human subject’s approval from the internal review board at CHRMC.

Study questionnaires included demographic information, the Perceived Quality of Life Scale (PQOL),6 the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36),7 the Satisfaction With Life Scale (SWLS),8, 9 questions on bowel and bladder continence, and 11 questions regarding sexuality and pregnancy. In a previous study conducted by one of the coauthors10 on adolescents with disabilities, smoking behavior was shown to be associated with engaging in risky sexual behavior (eg, unprotected sex, multiple partners) and was, therefore, included in this study. The list of sexuality questions and the response options are available from the authors on request.

Results 

Sample characteristics are presented in table 1. Women comprised 58% of the sample (mean, 24y). The sample was 85% white, which is representative of the population of Washington State. Approximately 14% of the sample reported being married. Although we did not select for lesion level or condition severity, it is interesting to note that the sample was evenly split between those with and without hydrocephalus. Table 2 describes the results by sex and hydrocephalus status.

Table 1. Sample Characteristics by Sex and Hydrocephalus Status

	Characteristics	Male		Female
		No Hydrocephalus (n=27)	Hydrocephalus (n=25)	No Hydrocephalus (n=33)	Hydrocephalus (n=36)
	Mean age ± SD (y)	25.39±6.64	25.92±6.09	23.65±6.45	23.26±5.91
	Motor lesion level
	Thoracic high lumbar	NA	25.0	9.7	22.9
	Mid low lumbar	18.5	33.3	16.1	42.9
	Sacral	55.6	41.7	58.1	31.4
	No loss	25.9	NA	16.1	2.9
	Sensory lesion level
	Thoracic high lumbar	23.1	36.4	10.0	50.0
	Mid low lumbar	42.3	59.1	56.7	47.1
	Sacral	34.6	4.5	33.3	2.9
	No loss	NA	NA	NA	NA
	Education
	Less than high school	22.2	24.0	24.3	25.0
	High school grad/GED	18.5	36.0	39.4	33.3
	More than high school	59.3	40.0	36.3	41.7
	Employment status
	Employed	53.8	43.5	48.5⁎	25.7⁎
	Not employed	15.4	43.5	24.2	31.4
	Student	30.8	13.0	27.3	42.9
	Marital status
	Single	74.1	92.0	65.6	80.6
	Married/significant other	25.9	NA	25.1	19.4
	Separated/divorced	NA	NA	9.4	NA
	Ethnicity
	White	88.9	76.0	84.8	94.4
	Black	NA	NA	3.0	NA
	Asian	3.7	NA	NA	NA
	Hispanic	NA	4.0	6.1	NA
	Native American	3.7	4.0	NA	NA
	Mixed ethnicity	3.7	16.0	6.1	5.6
	Mobility
	No aid	63.0	24.0	66.7	25.0
	Aid	29.6	36.0	6.1	8.3
	Wheelchair	7.4	40.0	27.3	66.7

NOTE. Percentages may not add up to 100 because of rounding. Percentages are based on people of that sex who do or do not have hydrocephalus and have a valid answer to that question. Abbreviations: GED, General Educational Development diploma; NA, not applicable; SD, standard deviation.

⁎ Within sex, subject with hydrocephalus and subjects without hydrocephalus differ at α less than or equal to .05 level.

Table 2. Sexual Activity, Education, Bladder and Bowel Management, and Satisfaction With Sexuality by Sex and Hydrocephalus Status

	Characteristics	Male		Female
		No Hydrocephalus (n=27)	Hydrocephalus (n=25)	No Hydrocephalus (n=33)	Hydrocephalus (n=36)
	Age started dating (y)
	<15	22.2	12.0	15.2	19.4
	15–18	37.0	32.0	51.5	27.8
	18–21	22.2	24.0	9.1	13.9
	>21	7.4	4.0	6.1	2.8
	Never dated	11.1	28.0	18.2	36.1
	Sex education
	Any sex education	96.3	100.0	100.0⁎	88.9⁎
	Sex education at home	29.6‡	28.0	60.6‡	45.7
	Sex education at school	96.3	100.0	97.0	94.1
	Doctor talked about ability to have sex	44.4	32.0	51.5	57.1
	Doctor talked about ability to have children	22.2	28.0§	72.7	63.9§
	Was sex education helpful?	76.9	84.0	93.8	88.2
	Sexual activity
	Have you been sexually active?	48.1	68.0	63.6	44.4
	Has children of his/her own	14.8	NA	21.2	19.4
	Problems during pregnancy?	NA	NA	57.1	57.1
	Selected satisfaction items from PQOL
	Satisfaction with level of sexual activity	5.77±3.24	4.28±3.34	7.17±3.61	7.53±2.86
	Satisfaction with respect from others	7.37±2.42	6.84±3.06	8.03±2.54	7.49±2.92
	Satisfaction with income meeting needs	5.38±2.67	4.40±3.50	6.43±3.31	5.42±3.34
	SWLS
	I am satisfied with my life	4.52±1.89	4.52±2.16	5.18±1.78	4.83±1.80
	I have gotten most important things I want in life	4.56±1.85	4.52±1.83	5.18±1.86	4.83±1.77
	Overall SWLS score	21.00±8.15	21.88±8.48	24.53±8.12	21.86±7.62
	Bladder management
	Spontaneous	59.3†	16.7†	42.4⁎	16.7⁎
	Condom catheter	NA	NA	3.0	NA
	Pads/diapers	18.5	29.2	12.1	22.2
	Intermittent catheterization	18.5	41.7	39.4	50.0
	Indwelling/suprapubic catheter	NA	8.3	NA	NA
	Mitrofanoff	NA	4.2	3.0	8.3
	Other	3.7	NA	NA	2.8
	Urinary continence
	No accidents	44.4	28.0	39.4	25.0
	Seldom/rarely	40.7	36.0	33.3	50.0
	Frequently/occasionally	14.8	36.0	27.3	25.0
	Bowel management
	Spontaneous	66.7	56.0	69.7	37.1
	Suppository	NA	8.0	6.1	8.6
	Digital/manual removal	3.7	12.0	9.1	14.3
	Enemas	11.1	8.0	NA	5.7
	Angiotensin-converting enzyme	11.1	8.0	6.1	20.0
	No program	7.4	4.0	6.1	11.4
	Other	NA	4.0	3.0	2.9
	Bowel accidents
	% no accidents	48.1	24.0	51.5	30.6
	% seldom/rarely	40.7	52.0	39.4	52.8
	% frequently/occasionally	11.1	24.0	9.1	16.7

NOTE. Values are percent or mean ± SD. Percentages may not add up to 100 because of rounding. Percentages are based on the proportion of people with a valid answer to each question.

⁎ Within sex, subjects with hydrocephalus and subjects without hydrocephalus differ at α less than or equal to .05 level. † Within sex, subjects with hydrocephalus and subjects without hydrocephalus differ at α less than or equal to .01 level. ‡ Across sex, males and females without hydrocephalus differ on getting sex education at home at α less than .05 level. § Across sex, males and females with hydrocephalus differ on having their doctor talk to them about their ability to have a child at α less than .05 level.

Before conducting the logistic regression, correlations among the variables of interest were reviewed. Those variables not significantly correlated with either being sexually active or with each other were excluded from subsequent analyses. A hierarchical logistic regression was then conducted. In the first block, based on previous studies, age and sex were included in the model. Being “sexually active” was significantly associated only with “age” in this block. For each year increase in age, the odds ratio (OR) for sexual activity increased 1.2 times. Although the odds of being sexually active were greater for women (OR=1.7), it was not a significant predictor in the equation. In the second block, we entered the variables “urinary and bowel incontinence,” “hydrocephalus status,” and “number of secondary conditions.” Those with urinary incontinence were .77 times less likely to be sexually active, and their likelihood of being sexually active further decreased .66 times for each additional secondary condition reported. There were no significant differences between those who did or did not have hydrocephalus. When these variables entered the equation, sex became a significant predictor, with women 2.3 times more likely to be sexually active.

The final block of variables entered into the equation were “smoking” and “talked with doctor about ability to have sex.” Smoking was the most significant positive predictor in the model, with those who smoked 10 times more likely to be sexually active than those who did not smoke. There was no significant difference in the odds of being sexually active for those who had or had not talked with their doctor about their ability to have sex.

We also reviewed perceived QOL and satisfaction with life data to determine if there was an association with sexual activity. Women without hydrocephalus were more likely to be sexually active and were significantly more satisfied with life than women with hydrocephalus. However, there were no differences identified in satisfaction with life between men and women or between those who were or were not sexually active. In general, adolescents and young adults in the sample were only slightly satisfied with their life.

Discussion 

The results of our study are similar to those found by Verhoef et al.4 In both studies, women were more than 2 times more likely to have engaged in sexual activity than men even though the age range of our study was older (15–35y); however, a much higher proportion of subjects without hydrocephalus were sexually active in the Verhoef study. For example, in the Verhoef study, 100% of the men without hydrocephalus reported having been sexually active, whereas in our study only 48.1% of the men without hydrocephalus reported having been sexually active. The Verhoef study reported that 88% of women without hydrocephalus were sexually active compared with only 63.6% in our study. The proportion of persons with hydrocephalus who reported being sexually active was similar. Unlike the Verhoef study, which included 54 subjects (34% of the sample) with an IQ of 70 or less, our study excluded those with an IQ of 69 or less and those who could not read at the 5th grade level. Differences in terminology and in cognitive function, however, make comparisons difficult.

Urinary incontinence was more frequent in those women with hydrocephalous, and women with hydrocephalus were more likely to never have dated. Sphincter control is a learned skill acquired during childhood and is associated with developing feelings of independence and positive self-esteem. Urinary incontinence can lead to apprehension surrounding social and sexual interactions for a person with spina bifida. A loss of sphincter control and urinary incontinence in patients with spina bifida may affect personal feelings about their sexuality and self-confidence in several ways. Fear of incontinence during an intimate moment may heighten anxiety and ruin an otherwise pleasurable moment. In addition, the use of urine-collection devices, pads, or adult diapers during sexual activity may adversely affect confidence.

The age that subjects started dating did not differ by sex. The majority of subjects began dating by age 18 in those without hydrocephalus and by age 21 in those with hydrocephalus. A larger proportion of subjects with hydrocephalus never dated regardless of sex.

Almost all male spina bifida participants, regardless of the presence or absence of hydrocephalus, reported receiving sex education. However, women with hydrocephalus were less likely to have received sex education than women without hydrocephalus (P≤.05). Women without hydrocephalus were more likely to receive sex education at home than men without hydrocephalus. More sex education was provided at school than at home or by a physician. Thirty-eight percent of men and 54% of women received information about sexual function from their physicians unlike the study by Verhoef et al4 in which only about 20% received such information.

Only 15% of men without hydrocephalus and no men with hydrocephalus fathered children. More women reported having children. Physicians were more likely to speak to women about having children or sex than to men. More than half of all women who had children reported problems with pregnancy. The nature of the problems was not ascertained.

Research on smoking in adolescents with spina bifida is lacking. The finding that smoking was the most significant predictor in this study for being sexually active may reflect greater risk-taking behavior in general, but, from our study, we cannot determine if those who smoked were more socially active or influenced by peers or family members who smoked. Penny and Robinson12 found that adolescents with fewer coping resources were more likely to smoke, have lower self-esteem, have a more external locus of control, and have a higher level of anxiety compared with those who did not smoke. Ironically, smoking increases the risk of erectile dysfunction, and health care providers should review this effect with adolescents and young adults with spina bifida because smoking may compound any sexual dysfunction because of the spinal cord impairment itself.

Conclusions 

Research is limited on the sexual behaviors and reproductive function of adolescents and young adults with spina bifida. There is no question that persons with spina bifida are sexually active, and success in this basic participation in adult life contributes to their QOL. Our study indicates that persons with spina bifida do receive sexual education primarily at school rather than from family or physicians. Sex education at home seemed to be less frequent for men with spina bifida than for women. Adolescents and young adults with spina bifida and hydrocephalus were less likely to have dated. Although satisfaction with life is affected by many factors, men were less satisfied with their level of sexual activity than were women. A strong association between dissatisfaction with life and engaging in health risk behaviors among adolescents with disabilities has previously been reported.10 The strong association between sexual activity observed in these data and smoking behavior may be a reflection of this dissatisfaction with life. Enhancing opportunities for social activities and educational programs aimed at reducing health risk behaviors as well as providing forums for peer education regarding sexuality, dating, and parenting are possible ways to improve satisfaction with life for persons with spina bifida and should not be dismissed as unimportant.