- •Women with cystic fibrosis (wwCF) age ≥25 years have significantly different sexual and reproductive health (SRH) experiences than non-CF peers.
- •Most wwCF view their CF doctor as their main physician and almost half report no primary care provider (PCP).
- •WwCF report suboptimal SRH care compared to their preferences.
- •There is an urgent need to improve access to and delivery of SRH care for wwCF of all ages.
- •Innovative partnerships and initiatives may benefit SRH care and improve outcomes for wwCF.
Abbreviations:SRH (sexual and reproductive health), wwCF (women with cystic fibrosis), HEMT (highly effective modulator therapy), CFTR (CF transmembrane conductance regulator), AYA (adolescent and young adult), STI (sexually transmitted infection)
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Cystic Fibrosis Foundation Patient Registry Report 2020. 2020. Accessed March 9, 2022. https://www.cff.org/Research/Researcher-Resources/Patient-Registry/2020-Patient-Registry-Annual-Data-Report.pdf
- Cystic fibrosis year in review 2019: section 1 CFTR modulators.Pediatr Pulmonol. 2020; 55 (Dec): 3236-3242
- Elexacaftor–tezacaftor–ivacaftor for cystic fibrosis with a single Phe508del allele.N Engl J Med. 2019 Nov 7; 381: 1809-1819
Zemanick E.T., Taylor-Cousar J.L., Davies J., Gibson R.L., Mall M.A., McKone E.F., McNally P., Ramsey B.W., Rayment J.H., Rowe S.M., Tullis E., et al. A Phase 3 Open-Label Study of ELX/TEZ/IVA in Children 6 Through 11 Years of Age with CF and at Least One F508del Allele. Am J Respir Crit Care Med, 203(12), 1522–32.
- Exploring the reproductive decision support needs and preferences of women with cystic fibrosis.Contraception. 2021; 103 (Jan 1): 32-37
- Provider and patient attitudes regarding sexual health in young women with cystic fibrosis.Pediatrics. 2016; 137 (Jun 1)e20154452
- Pregnancy among cystic fibrosis women in the era of CFTR modulators.J Cyst Fibros. 2017; 16 (Nov 1): 687-694
- Optimizing sexual and reproductive health across the lifespan in people with cystic fibrosis.Pediatr Pulmonol. 2022; 57 (Suppl): S89-S100
- Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis.J Cyst Fibros. 2018; 17 (Jan 1): 57-63
- Sexual and reproductive health care utilization and preferences reported by young women with cystic fibrosis.J Cyst Fibros. 2018; 17 (Jan 1): 64-70
National Survey for Family Growth (NSFG) 2017-2019. Available from: http://www.cdc.gov/nchs/nsfg.htm.
- Outcomes assessment: development and validation of a 6-item version of the female sexual function index (FSFI) as a diagnostic tool for female sexual dysfunction.J Sex Med. 2010; 7 (Mar 1): 1139-1146
- Use of reproductive and sexual health services among female family planning clinic clients exposed to partner violence and reproductive coercion.Matern Child Health J. 2015; 19 (Jul): 1490-1496
- Maximizing the quality of cognitive interviewing data: an exploration of three approaches and their informational contributions.in: Proceedings of the Annual Meeting of the American Statistical Association. 2001 (Aug 5)
- Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support.J Biomed Inform. 2009; 42 (Apr 1): 377-381
- Gender differences in outcomes of patients with cystic fibrosis.J Women's Health. 2014; 23: 1012-1020
- Gender gap in cystic fibrosis mortality.Am J Epidemiol. 1997; 145: 794-803
- Effects of puberty on cystic fibrosis related pulmonary exacerbations in women versus men.Pediatr Pulmonol. 2014; 49: 28-35
- Effect of estrogen on pseudomonas mucoidy and exacerbations in cystic fibrosis.N Engl J Med. 2012; 366: 1978-1986
- A prospective study of the effects of sex hormones on lung function and inflammation in women with cystic fibrosis.Ann Am Thorac Soc. 2021; 18: 1158-1166
- Female sex and gender in lung/sleep health and disease. Increased understanding of basic biological, pathophysiological, and behavioral mechanisms leading to better health for female patients with lung disease.Am J Respir Crit Care Med. 2018; 198 (Oct 1): 850-858
- Provider attitudes and practices toward sexual and reproductive health care for young women with cystic fibrosis.J Pediatr Adolesc Gynecol. 2017; 30 (Oct 1): 546-552
- High proportion of abnormal pap smear tests and cervical dysplasia in women with cystic fibrosis.Eur J Obstetrics Gynecology Reproductive Biol. 2018; 221 (Feb 1): 40-45
- Human papillomavirus (HPV) and cervical dysplasia in adult female cystic fibrosis (CF) lung transplant recipients.Thorax. 2022; 77: 625-627
- Preventive services received by adolescents with cystic fibrosis and sickle cell disease.Arch Pediatr Adolesc Med. 1999; 153 (Jan 1): 27-32
- The specialist as primary care provider in CF.J Cyst Fibros. 2020; 19 (Sep 1): 844-845
- Adult cystic fibrosis patients' experiences of primary care consultations: a qualitative study.Br J Gen Pract. 2006; 56 (Jul 1): 518-525
- Family-building and parenting considerations for people with cystic fibrosis.Pediatr Pulmonol. 2022; 57 (Suppl): S75-S88
- Developing sexual and reproductive health educational resources for young women with cystic fibrosis: a structured approach to stakeholder engagement.Patient-Patient-Centered Outcomes Res. 2019; 12 (Apr): 267-276
- Engaging stakeholders in the development of a reproductive goals decision aid for women with cystic fibrosis.J Patient Experience. 2022; 923743735221077527
Cystic Fibrosis Reproductive and Sexual Health Collaborative. Sexual and Reproductive Health Resource Guide. https://cfreshc.org/srh-guide/. Accessed August 15, 2022.
- Interprofessional provider educational needs and preferences regarding the provision of sexual and reproductive health care in cystic fibrosis.J Cyst Fibros. 2019; 18 (Sep 1): 671-676
- Improvement in contraceptive coverage and gynecological care of adult women with cystic fibrosis following the implementation of an on-site gynecological consultation.Contraception. 2020; 101 (Mar 1): 183-188
- Electronic health nudges to improve reproductive health care for women with cystic fibrosis.J Cyst Fibros. 2021; 20 (May 1): 397-398
- Partnership enhancement program: piloting a communication training program for cystic fibrosis care teams.J Patient Experience. 2021; 823743735211014049
Power to Decide. One Key Question. https://powertodecide.org/one-key-question. Accessed August 12, 2022.
Cystic Fibrosis Foundation. Therapeutics Development Network Sexual Health, Reproduction, and Gender Health Research (SHARING) Working Group. https://www.cff.org/tdn-sexual-health-reproduction-and-gender-research-working-group. Accessed August 15, 2022.