More, better info on reproductive health ‘vital’ for CF women: Study

Women found to lack opportunities to discuss pregnancy, other goals

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Women with cystic fibrosis (CF) are motivated to work with their healthcare providers to make decisions about their reproductive health, but they often are missing the necessary information and opportunities to have these discussions, a new study highlights.

“Lack of information specific to people with CF about reproductive choices compromised capability to engage in shared decision-making,” the researchers wrote, adding, “There was a perception of few opportunities for discussions with clinicians about reproductive goals.”

The study, “Sharing decisions on reproductive goals: A mixed-methods study of the views of women who have cystic fibrosis,” was published in the Journal of Cystic Fibrosis.

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Study finds lack of information for patients on reproductive healthcare  goals

With modern advances in medical care, people with CF today are living longer and healthier lives than has ever before been possible. Given this, many women with CF are choosing to pursue motherhood through pregnancy.

However, CF can cause issues with reproductive health and fertility. Thus, according to these and other researchers, it’s important for healthcare providers to have open, honest discussions with CF patients to support them in pursuing their reproductive goals.

“Providing effective and timely support to people with CF with their decisions about their reproductive goals is vital in enabling them to make informed decisions that are sensitive to their individual values and preferences,” the team wrote.

The team of U.K. scientists wanted to better understand how women with CF engage with healthcare providers in discussions about their reproductive health — including understanding how well-equipped patients felt to participate in these conversations, how motivated they were to participate in reproductive decision-making, and whether they were getting opportunities to have these discussions. The team noted that, for the purposes of this study, they defined “women with CF” as anyone with cystic fibrosis who is able to get pregnant.

The researchers conducted an online survey that was answered by 182 women with CF, ages 20 to 49, in the U.S., the U.K., and Canada. The vast majority of participants were white, heterosexual, college-educated, and in a long-term relationship. About one-third of the patients were interested in pursuing pregnancy, were pregnant, or receiving fertility treatment, whereas about 1 in 4 had children already. Also, about 1 in 10 of the women said they were interested in becoming mothers through non-pregnancy routes (e.g., adoption).

Interviews also were conducted with 21 women with CF in the U.K. and the U.S. with similar demographics to the survey respondents.

The results showed that women with CF were highly motivated to engage with their healthcare providers in making decisions about their reproductive health. However, patients often felt they lacked adequate information to make these decisions.

“Women reported a lack of information specific to making decisions about their reproductive goals, particularly in relation to the impact of CF and CF medications on their contraception options, fertility, impact on their CF, impact of their CF on the infant and breastfeeding,” the researchers wrote.

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Women often reported that healthcare providers would ask about their reproductive goals, but this was often done only briefly at annual reviews, with little time for in-depth discussions. The researchers noted that, “some individuals felt that they did not wish to ‘bother’ the CF clinicians, who they felt had more pressing priorities, with questions about their reproductive goals.”

One woman described her experience as “mainly annual reviews with the CF nurse/specialist and it would be more a, kind of, tick box exercise of did, like ‘Are you planning to have children?’ And obviously my answer would always be no … And it would be left at that or they’d be like, ‘Okay well that’s fine but if you change your mind…'”

Women had varied health status and reproductive goals yet there was a striking consistency in their experiences, particularly with regard to unmet information needs and lack of opportunities within routine CF care to engage in [shared decision-making] in relation to reproductive goals.

Despite the wide variation in life experiences among the women in this study, the lack of information and opportunities consistently emerged as key issues for managing reproductive health.

“Women had varied health status and reproductive goals yet there was a striking consistency in their experiences, particularly with regard to unmet information needs and lack of opportunities within routine CF care to engage in [shared decision-making] in relation to reproductive goals,” the researchers wrote.

These findings suggest that a widespread effort to provide better care for this patient population is needed, the team said. The scientists proposed that this could involve steps like better clinician training, setting aside more formalized time to have discussions about reproductive health, or using decision-making tools created to help guide these discussions.

The team also highlighted a particular need to engage with women who might have limited ability to access healthcare resources.

“Recommendations from this study include: investment in shared decision-making training for clinical staff, initiation of pre-conception conversation by healthcare professionals, incorporation of a broader focus on reproductive and pre-conception health options in consultations, pre-consultation preparation for women for person centred conversations, co-development of decision support tools for women, and specific support for those who are disadvantaged,” they wrote.

Overall, the researchers concluded that “multi-level interventions are needed to support person-centred care about reproductive goals, for example when choosing medication.”