Prioritizing sexual and reproductive health research and care for people with cystic fibrosis: A 2023 workshop report from the Cystic Fibrosis Foundation Sexual Health, Reproduction, and Gender (SHARING) Research Working Group

被引：1

作者：

Kazmerski, Traci M. ^{[1
,2
]}

Moy, Christie ^{[3
]}

Aliaj, Enid ^{[3
]}

Hudson, Jessica ^{[3
]}

Wright, Brandon ^{[4
]}

Poranski, Maddie ^{[4
]}

Sjoberg, Jacqui ^{[4
]}

Taylor-Cousar, Jennifer L. ^{[5
]}

Georgiopoulos, Anna M. ^{[6
]}

Ladores, Sigrid L. ^{[7
]}

Trimble, Aaron ^{[8
]}

Tangpricha, Vin ^{[9
]}

Khan, Farah Naz ^{[10
]}

Ramasamy, Ranjith ^{[11
]}

Leitner, Danielle Velez ^{[12
]}

West, Natalie E. ^{[13
]}

Delos Santos, Rochelle ^{[14
]}

Stransky, Olivia M. ^{[2
]}

Wilson, Alexandra ^{[5
]}

Keller, Ashley ^{[15
]}

Jain, Raksha ^{[15
]}

机构：

[1] Univ Pittsburgh, Sch Med, Dept Pediat, Univ Ctr,120 Lytton Ave,Suite M060, Pittsburgh, PA 15213 USA

[2] Univ Pittsburgh, Ctr Innovat Res Gender Hlth Equ CONVERGE, Pittsburgh, PA 15213 USA

[3] Cyst Fibrosis Fdn, Bethesda, MD 15213 USA

[4] SHARING Res Working Grp, Patient Partner, Bethesda, MD 20814 USA

[5] Natl Jewish Hlth, 1400 Jackson St J318, Denver, CO 80206 USA

[6] Massachusetts Gen Hosp, Psychopharmacol, 55 Fruit St,Yawkey 6900, Boston, MA 02114 USA

[7] Univ Alabama Birmingham, Sch Nursing, 1720 S 2nd Ave,NB485-A, Birmingham, AL 35294 USA

[8] Oregon Hlth & Sci Univ, 3270 Southwest Pavil Loop OHSU Phys Pavil, Portland, OR 97239 USA

[9] Emory Univ, Dept Med, Sch Med, 100 Woodruff Circle Atlanta, Atlanta, GA 30322 USA

[10] Univ Washington, 1959 NE Pacific St, Seattle, WA 98195 USA

[11] Univ Miami, 1120 NW 14th St, Miami, FL 33136 USA

[12] Rutgers Hlth, 125 Paterson St Suite 4100, New Brunswick, NJ 08901 USA

[13] Johns Hopkins Univ, Dept Biostat, 1830 Bldg 5th Floor Pulm, Baltimore, MD 21287 USA

[14] Seattle Childrens Hosp, 4800 Sand Point Way NE, Seattle, WA 98105 USA

[15] Univ Texas Southwestern, 5323 Harry Hines Blvd, Dallas, TX 75390 USA

来源：

JOURNAL OF CYSTIC FIBROSIS | 2024年 / 23卷 / 04期

关键词：

Cystic fibrosis; Sexual and reproductive health; Community-engaged research; PULMONARY EXACERBATIONS; STANDARDIZED TREATMENT; PROVIDER ATTITUDES; YOUNG-WOMEN; OUTCOMES; PREFERENCES; PATTERNS; FEMALES; STOP; CFTR;

D O I：

10.1016/j.jcf.2024.03.007

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

Background: To address sexual and reproductive health (SRH) concerns among people with cystic fibrosis(PwCF), the CF Foundation created the Sexual Health, Reproduction, and Gender Research (SHARING) Working Group. This report summarizes CF community SRH research priorities and workshop discussions/future study planning. Methods: Pre-workshop, we distributed a community prioritization survey on CF SRH research/care. During the workshop, we used results and reviewed existing research to establish research priorities and design studies to address identified knowledge gaps. Results: A total of 303 respondents (85 % PwCF, 15 % caregivers) completed the survey. Highly-rated SRH topics were: 1) effects of CF modulator therapy on sex hormones; 2) effects of sex hormones on CF; 3) fertility; 4) pregnancy; and 5) SRH/mental health. Twenty-four workshop participants established the need for further research on sex hormones and CF, optimizing SRH care provision, and fertility/ART. Conclusion: SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.

引用

页码：639 / 646

页数：8

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