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

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. 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. 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%). 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.

Ehrenberg S ，Stransky OM ，Wright CE ，Jain R ，Kazmerski TM ... -  《-》

Interprofessional provider educational needs and preferences regarding the provision of sexual and reproductive health care in cystic fibrosis.

Sexual and reproductive health (SRH) is an important disease-specific concern for adolescent and young adult (AYA) women that is not consistently addressed in cystic fibrosis (CF) centers. This study identifies educational needs and preferences of interprofessional CF providers regarding SRH in AYA women with CF. Interprofessional CF providers participated in an anonymous survey regarding general and CF-specific SRH knowledge and skills, factors for optimizing SRH care, and preferred approaches for SRH training. We calculated descriptive statistics for all respondents and stratified by provider type. A total of 523 providers completed the survey (39% physicians/advanced practice providers, 19% nurses, 20% social workers, and 22% other disciplines). Half reported comfort responding to female AYA SRH concerns; however, only one-third were comfortable asking appropriate questions and confident taking a sexual history. Only 29% were comfortable with their current CF-specific SRH knowledge. Respondents' preferred SRH topics for further training included: pregnancy/parenthood planning, sexual functioning, urinary incontinence, intimate partner violence, and taking a sexual history. Nearly two-thirds felt having connection to women's health specialists familiar with CF would facilitate SRH care. Approximately one-third desired SRH educational materials for providers to view at point-of-care or through online case-based learning; <10% were interested in role playing SRH skills. Many interprofessional CF providers lack comfort and skills in addressing SRH with AYA women with CF. Provider training needs and approaches identified in this study can be used to develop tailored educational interventions to improve comprehensive CF care.

Kazmerski TM ，Nelson EB ，Newman LR ，Haviland MJ ，Luff D ，Leichtner AM ，Hayes MM ，Miller E ，Emans SJ ，Sawicki GS ... -  《-》

Sexual and reproductive health care utilization and preferences reported by young women with cystic fibrosis.

This study aimed to describe and compare the sexual and reproductive health (SRH) care utilization among young women with cystic fibrosis (CF) with the general United States (U.S.) population. Women with CF ages 15-24years from five geographically diverse U.S. CF centers participated in a survey investigating SRH. Results were summarized and compared to a nationally representative sample of young women aged 15-24 who participated in the U.S. National Survey of Family Growth (NSFG) using logistic regression to adjust for confounders. A total of 188 women with CF (19.7±2.7years) completed the survey; data were compared to 1997 NSFG respondents (19.6±0.10years). Women with CF had lower lifetime rates of ever obtaining a Pap smear or pelvic exam (26% vs. 57%; p<0.001) and similar rates of HPV vaccination (44% vs. 43%; p=0.64) compared to NSFG respondents. Thirty-seven percent of women with CF reported seeking contraception and <10% reported contraceptive counseling, STI testing/counseling, or pregnancy testing in their lifetime. In the prior 12months, 41% of NSFG respondents reported seeking contraception, 24% received contraceptive counseling, 22% STI testing/counseling, and 23% pregnancy testing. A minority of women with CF received or discussed SRH care in the CF setting, although 66% wanted to discuss SRH with their CF team. Young women with CF report low rates of SRH care utilization and desire SRH discussions in the CF setting. Interventions should target improved SRH care delivery and encourage patient-provider communication around SRH in the CF care setting.

Kazmerski TM ，Sawicki GS ，Miller E ，Jones KA ，Abebe KZ ，Tuchman LK ，Ladores S ，Rubenstein RC ，Sagel SD ，Weiner DJ ，Pilewski JM ，Orenstein DM ，Borrero S ... -  《-》

Sexual and reproductive health experiences and care of adult women with cystic fibrosis.

As survival and health improve in people with cystic fibrosis (CF), more women with CF (wwCF) are considering their sexual and reproductive health (SRH). This study compared SRH experiences, behaviors, and care utilization of wwCF to the general population and defined CF-impacted considerations and care preferences. We surveyed wwCF aged ≥25 years regarding SRH and compared results to the US National Survey of Family Growth (NSFG;n = 4357) and friend controls(n = 123). We used descriptive statistics and chi-squared/Fisher's exact testing and linear regression for comparisons. A total of 460 wwCF (mean age 36.1 years) completed the survey. WwCF were less likely to report current contraceptive use (43%vs76% NSFG, p<0.001;60% friends, p = 0.005). Nearly 25% of wwCF reported worsened CF symptoms during their menstrual cycles, 50% experienced urinary incontinence, and 80% vulvovaginal candidiasis. WwCF were significantly less likely to be parents (46%vs62% friends, p = 0.015) and to have experienced pregnancy (37%vs78% NSFG, p<0.001;58% friends, p = 0.002). More wwCF required medical assistance to conceive (29%vs12% NSFG, p<0.001 and 5% friends, p<0.001). Eighty-four percent of wwCF view their CF doctor as their main physician and 41% report no primary care provider (vs19% friends; p<0.001). WwCF report suboptimal rates of contraceptive and preconception counseling/care and are less likely to have received HPV vaccination (42%vs55%friends, p = 0.02). Despite desiring SRH conversations with their CF team, <50% report discussing SRH topics. WwCF have significantly different SRH experiences than non-CF peers. They report suboptimal SRH care compared to their preferences highlighting an urgent need to encourage SRH counseling/care in the CF model.

Kazmerski TM ，Stransky OM ，Lavage DR ，Taylor-Cousar JL ，Sawicki GS ，Ladores SL ，Godfrey EM ，Aitken ML ，Fields A ，Sufian S ，Jain M ，Barto TL ，Billings J ，Hadjiliadis D ，Jain R ... -  《-》

Perspectives of adolescent girls with cystic fibrosis and parents on disease-specific sexual and reproductive health education.

Adolescent girls with cystic fibrosis (CF) face significant disease-specific sexual and reproductive health (SRH) concerns that are not typically addressed in routine clinical care. Additionally, there is a paucity of developmentally appropriate CF-specific SRH educational resources for this population. The goal of this study was to explore patient and parent attitudes toward SRH educational resources for adolescent girls with CF. Adolescent girls ages 13-18 years with CF and parents of daughters ages 10-18 years with CF completed individual, semi-structured interviews regarding their experiences and preferences around CF-specific SRH education and care. To facilitate discussion, participants provided feedback on the format and design of existing SRH educational resources. Qualitative analysis was conducted using a thematic analysis approach. We interviewed 26 participants (14 parents and 12 patients). The majority reported they had never discussed SRH in the CF care setting. All participants preferred a comprehensive, online patient educational resource complemented by real patient stories and interactive components. Participants noted that such resources should create a sense of normalcy and community around CF and female SRH. Most desired more frequent communication around SRH between adolescent girls with CF and their healthcare providers as a way to promote SRH knowledge, decision making, and health outcomes. Adolescent girls with CF and their parents desire an online patient educational resource that normalizes SRH and enhances patient-provider communication around these topics. Creation of developmentally appropriate resources would facilitate improved health outcomes around this aspect of comprehensive care in CF.

Kazmerski TM ，Hill K ，Prushinskaya O ，Nelson E ，Greenberg J ，Pitts SA ，Borrero S ，Miller E ，Sawicki GS ... -  《-》