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Partner perspectives on women's sexual and reproductive healthcare in cystic fibrosis

Published:August 12, 2022DOI:https://doi.org/10.1016/j.jcf.2022.08.003

      Highlights

      • Partners of women with CF are not routinely involved in SRH care or discussions.
      • Partners of women with CF want to discuss SRH concerns with CF care teams.
      • Partners may serve as key supports for women with CF and may coproduce interventions to optimize CF SRH care.

      Abstract

      Background

      Women with cystic fibrosis (CF) face many sexual and reproductive health (SRH) concerns. Studies suggest that educating and involving partners in SRH care can improve outcomes. This study investigated partners’ perceptions of and preferences for women's SRH care in CF.

      Methods

      We surveyed partners of women with CF from ten United States (U.S.) CF centers regarding their attitudes and preferences related to CF SRH care. Items assessed experiences with SRH care, sexual relationships, family planning, pregnancy, fertility, and parenthood. We used descriptive statistics to assess results related to the timing, content, setting and delivery of CF SRH care.

      Results

      A total of 94 partners completed the survey (94% male; average age 36±1 years; 70% married; 36% parents). Among those who/whose partners experienced a pregnancy, 48% received preconception counseling and 29% fertility testing/treatment. One-third of all respondents (32%) worried their children would have CF and 86% would undergo CF genetic testing if their CF partner became pregnant. One-third (34%) indicated that they did not have any SRH conversations with their partner's CF team, while 70% would like to have such discussions. The topics that respondents would most like to discuss were pregnancy (50%), fertility (43%), sexual functioning (36%), sexual activity (31%) and parenthood (29%).

      Conclusions

      Partners report gaps in SRH care and counseling despite the majority wanting to discuss SRH concerns with their partner's CF team. CF partners serve as key supports for women with CF and results can be used to design patient-centered interventions to optimize CF SRH care.

      Keywords

      Abbreviations:

      CF (cystic fibrosis), SRH (sexual and reproductive health), HEMT (highly effective CF modulator therapies), STI (sexually transmitted infections)
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