Women with CF Need Counseling to Preserve Fertility, US Study Finds

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Many women with cystic fibrosis (CF) wish to have biological children, but they often lack proper education and resources about fertility preservation, a U.S. study found.

The study, “Fertility preservation in women with cystic fibrosis pre-lung transplantation: A mixed methods study,” was published in the Journal of Advanced Nursing.

With continual advances in treatment, people with CF are living longer and those of childbearing age are increasingly choosing to become pregnant.

CF itself can cause problems with fertility. In addition, many patients eventually require a lung transplant to maintain their health, and transplant recipients typically need to take immune-suppressing medications for life to prevent organ rejection. A common side effect of these medications is infertility; as such, CF patients may wish to explore options to preserve fertility — processes like freezing eggs or sperm, which can be later used to have children.

A team of researchers at the University of Alabama at Birmingham conducted a two-part study to better understand what woman with CF know about fertility preservation.

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In its first part, the team surveyed 50 women with CF between the ages of 18 and 35 (average age, 28) and recruited nationwide. Most of the women reported being in a relationship (86%). The majority were not mothers (78%), but most said that they wanted to have their own children in the future (78%).

Despite their desire for a biological child, nearly three out of four (74%) survey respondents reported never discussing fertility preservation with their healthcare providers. About one in three (34%) said that they had never discussed options for parenthood with anyone.

The women generally had little knowledge about options for preserving fertility. The researchers noted that women who had conversations about fertility tended to be more knowledgeable about its preservation. Married women also tended to be more knowledgeable.

In the study’s second part, the researchers interviewed 20 women with CF, and summarized some of the broad themes that emerged from the discussions.

One major theme was that many women with CF are not adequately knowledge about fertility and its relationship to CF. The patients commonly reported that medical resources were scarce, and they often turned to other patients or social media for guidance.

“I did not feel there was a lot of information about fertility and CF. I was doing a lot of Googling and a lot of asking other women with CF about [their] experiences,” one woman said.

The women also noted that fertility in general was not viewed as a priority by their healthcare team, who often were focused on other aspects of health to the exclusion of the desire for a family.

“‘They [CF care team] just look at me as, ‘Okay, your lung function’s this, if you’re sick right now, I want to give you an antibiotic,’ they don’t see me … as somebody who wants to be a mother, somebody who wants to have a family,” said one woman.

“‘You [the patient] feel like an inconvenience, ‘Oh, whoops, I don’t want to step on your toes, but I’d like to have babies. I know my lungs are okay, but can I have a kid?'” said another.

The women recommended that CF care providers need to be educated about fertility in CF, and take care to bring up these issues with patients. The women stressed the importance of clinicians viewing patients as complete human beings with unique wants and needs, and not as merely a collection of symptoms to be managed.

“Looking at the whole person with CF as — we are normal people with … hopes and dreams … [including] fertility,” said one woman.

“I wish that they [CF care team] were more prepared to provide me information that I would need to know or maybe even ask me some questions, get me thinking more about it and be comfortable with it,” said another.

The interviewees also highlighted the importance of incorporating women’s healthcare into CF healthcare, and vice versa, to help with holistic care.

“Using the findings from this study, future research should … implement and evaluate interventions for women with CF to improve their understanding and use of FP [fertility preservation] services in planning their families,” the scientists concluded.

“Fertility preservation counselling is a focused topic that should be integrated into patient-provider discussions especially for patients whose lung function are steadily declining and lung transplantation is imminent,” they added.


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