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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.

Authors :
Kazmerski TM
Moy C
Aliaj E
Hudson J
Wright B
Poranski M
Sjoberg J
Taylor-Cousar JL
Georgiopoulos AM
Ladores SL
Trimble A
Tangpricha V
Khan FN
Ramasamy R
Leitner DV
West NE
Santos RD
Stransky OM
Wilson A
Keller A
Jain R
Source :
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2024 Jul; Vol. 23 (4), pp. 639-646. Date of Electronic Publication: 2024 Mar 13.
Publication Year :
2024

Abstract

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.<br />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.<br />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.<br />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.<br />Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.<br /> (Copyright © 2024 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.)

Details

Language :
English
ISSN :
1873-5010
Volume :
23
Issue :
4
Database :
MEDLINE
Journal :
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
Publication Type :
Academic Journal
Accession number :
38485603
Full Text :
https://doi.org/10.1016/j.jcf.2024.03.007