Reproductive health in young women with cystic fibrosis: Knowledge, behavior and attitudes

doi:10.1016/1054-139X(94)00096-W

Journal of Adolescent Health

Volume 17, Issue 1, July 1995, Pages 46-50

https://doi.org/10.1016/1054-139X(94)00096-W Get rights and content

Purpose:

The improved life-expectancy in cystic fibrosis (CF) results in the fact that the majority of affected young women now survive to face the same reproductive health decisions as other women, in addition to those that specifically relate to CF. The aim of this study was to assess the reproductive health knowledge of women with CF, to investigate the range of their reproductive health problems, and to review their reproductive health attitudes and behaviors.

Methods:

Women aged 18 years and over attending CF services in the state of Victoria, Australia were invited to complete a reproductive health questionnaire. Comparison subjects (n = 76) were enrolled from 2 primary care practices.

Results:

Fifty-five women participated (89%), with a median age of 22 years (range 18–50). There was no significant difference in marital status between the two groups and a similar proportion were sexually active, yet women with CF were less likely to use contraception. A majority of women with CF believed that fertility was reduced, and there was poor knowledge of the potentially deleterious effect of pregnancy. A relatively high proportion were planning to become pregnant in the near future. Twenty-two percent had tried to conceive, with a success rate of 67%.

Conclusions:

Women with CF are currently lacking important information about reproductive health that potentially has a major impact on their health and their lives.

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Cited by (97)

Sharing decisions on reproductive goals: A mixed-methods study of the views of women who have cystic fibrosis
2023, Journal of Cystic Fibrosis
There are complex medical, psychological, social and economic aspects to becoming a parent with Cystic Fibrosis (CF). A shared decision-making (SDM) approach could help women with CF make informed decisions about their reproductive goals that are sensitive to their individual values and preferences. This study investigated capability, opportunity, and motivation to participate in SDM from the perspective of women with CF.
Mixed-methods design. An international online survey was completed by 182 women with CF, to investigate participation in SDM in relation to reproductive goals, and measures of capability (information needs), opportunity (social environment) and motivation (SDM attitudes and self-efficacy) to engage in SDM. Twenty-one women were interviewed using a visual timelines method to explore their SDM experiences and preferences. Qualitative data were analysed thematically.
Women with higher decision self-efficacy reported better experiences of SDM relating to their reproductive goals. Decision self-efficacy was positively associated with social support, age, and level of education, highlighting inequalities. Interviews indicated that women were highly motivated to engage in SDM, but their capability was compromised by lack of information, perception of insufficient opportunities for focused discussions about SDM.
Women with CF are keen to engage in SDM about reproductive health, but currently lack sufficient information and support to do so. Interventions at patient, clinician and system levels are needed to support capability, opportunity and motivation to engage equitably in SDM in relation to their reproductive goals.
Family Planning and Reproductive Health in Cystic Fibrosis
2022, Clinics in Chest Medicine
Gynecologic health care for females with cystic fibrosis
2021, Journal of Clinical and Translational Endocrinology
As females with cystic fibrosis (CF) increasingly reach their reproductive years, gynecologic issues have become an important area of clinical care and research. First, females with CF may have disease-specific gynecologic problems, including cyclic pulmonary symptoms, vaginal yeast infections, and urinary incontinence. Next, contraceptive methods are thought to be overall safe and effective, however further research is needed to confirm this and to understand the lower rates of uptake among females with CF compared to the general population. Further, females with CF have reduced fertility, although the etiology of this is unknown and under investigation. While assisted reproductive technologies may help achieve pregnancy, decision-making around parenthood remains complex. Finally, while patients and providers agree on the importance of sexual and reproductive health care, females with CF underutilize basic preventive services such as cervical cancer screening, and better approaches are needed to bridge the gap with gynecology. In this review, we discuss the current state of gynecologic care for females with CF, as well as clinical and research opportunities for improvement.
Challenges Faced by Women with Cystic Fibrosis
2021, Clinics in Chest Medicine
Citation Excerpt :
Because CF is now largely diagnosed at birth, women cope with challenges related to hormonal shifts and SRH throughout their lives in the setting of this chronic illness (Fig. 1). The current model of health care delivery in the CF setting inadequately addresses the needs of women, resulting in large gaps in SRH care use and knowledge and suboptimal health outcomes.3–5 CF providers agree that they have a central role in the SRH care of these patients,6 but most do not routinely address these topics in their practice, nor do most feel comfortable doing so.7
Hormonal Contraception Effects on Pulmonary Function in Adolescents with Cystic Fibrosis
2020, Journal of Pediatric and Adolescent Gynecology
Citation Excerpt :
Thus, more and more women with CF use hormonal contraception (HC), some starting early during adolescence. Few studies address sexuality and contraception in adult women with CF and even fewer in adolescent women with CF. However, a 1995 study showed comparable rates of sexual activity in CF patients compared with the general population, but as found in other patients with chronic diseases, CF patients used less effective methods of contraception, resulting in unwanted or unplanned pregnancies.3 In 2015, Rousset Jablonski et al reported that in 120 CF women of childbearing age (18-48 years old), only 64% were using contraception.4
Estrogens are suspected to have a negative effect on pulmonary function in women with cystic fibrosis (CF). The aim of our study was to investigate, in a CF adolescent population, the effect of hormonal contraception (HC) on lung function by assessing the forced expiratory volume in 1 second (FEV1), the number of exacerbations of pulmonary condition, and antibiotic use.
We conducted a cohort retrospective chart review of girls from age 13 to 18 years old who were followed in the CF clinic of a university hospital center. Wilcoxon rank sum test with continuity correction, 2-sample t test, conditional test of Poisson rates, and χ² test were conducted to identify differences in results between adolescents with or without use of HC for the following outcomes: FEV1, use of antibiotics by nebulizer, and hospital admission for exacerbations of pulmonary condition.
Among 127 adolescents, 64/127 (50.4%) took HC; 12/127 (9%) continuously had been taking HC over 3 years. For girls taking HC for more than 3 years, FEV1 at 18 years old was significantly higher than for girls who had never taken HC (85.17% vs 71.05%; P = .043). However, there was no difference in the number of hospital admissions for exacerbation of pulmonary condition between these 2 groups (P = .057). There was no difference between HC vs non-HC users in the percent of patients taking antibiotics by nebulizer over the 6 years of follow-up.
Our study suggests that in adolescents with CF, HC has no deleterious effects on the FEV1. Further prospective studies could be done to confirm these results.
Improvement in contraceptive coverage and gynecological care of adult women with cystic fibrosis following the implementation of an on-site gynecological consultation
2020, Contraception
Our study aimed to evaluate the impact of the introduction of a new gynecologic referral service in our adult Cystic Fibrosis (CF) center on contraceptive coverage, gynecological follow-up regularity, and cervical cancer screening coverage.
We implemented an on-site gynecological consultation in our adult CF center in 2015. We compared the results of two surveys conducted successively in 2014 and in 2017 in a cohort of women with CF attending the Lyon CF center. Women completed the same self-report written questionnaire as in 2014. Main outcome measures were the comparisons of contraceptive coverage, gynecological follow-up regularity, and cervical cancer screening coverage between 2014 and 2017.
All the 136 women (100%) who attended the clinic in 2017 participated. Contraceptive prevalence rate increased from 69%(CI95%:60.3–78.1) to 86%(CI95%:79.6–92.9) between 2014 and 2017 (p = 0.005). Among transplanted patients, the contraceptive prevalence rate was 92.3%(CI95%:82.0–100) in 2017. Long acting reversible contraceptive use markedly increased from 10% to 21.6% (p = 0.005). The proportion of women that reported an access to gynecological care increased between 2014 and 2017 (74%(CI95%:66.3–82.0) vs 91%(CI95%:86.9–95.4), p < 0.005) and reached 100% among transplanted patients. Cervical cancer screening improved (55%(CI95%:51.2–68.8) vs 85%(CI95%:78.6–90.6) women ever screened) (p < 0.0005) and reached 100% among transplanted patients.
We observed an improvement in contraceptive coverage and gynecological care of adult women with CF following the implementation of a dedicated gynecological consultation in the CF center.
Service linkages and formal links between CF centers and gynecologists can facilitate access to disease-specific contraceptive counseling, adequate gynecological management and cervical cancer screening.

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¹: Dr. Sawyer was supported by an Australian NH&MRC post-graduate scholarship.

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International articleReproductive health in young women with cystic fibrosis: Knowledge, behavior and attitudes

Purpose:

Methods:

Results:

Conclusions:

J Adolesc Health Care

Am J Obstet Gynecol

J Adolesc Health Care

Lancet

Am J Obstet Gynecol

Fertil Steril

Adolesc Pediatr Gynecol

Chest

Pediatr Clin North Am

Cystic fibrosis: current survival and population estimates to the year 2000

Thorax

Cystic fibrosis in adolescents and adults

Quart J Med

International article
Reproductive health in young women with cystic fibrosis: Knowledge, behavior and attitudes