Attitudes and Decision Making Related to Pregnancy Among Young Women with Cystic Fibrosis

Overview

Journal Matern Child Health J

Specialty Health Services

Date 2016 Aug 18

PMID 27531009

Citations 22

Authors

Traci M Kazmerski

Theresa Gmelin

Breonna Slocum

Sonya Borrero

Elizabeth Miller

Affiliations

Soon will be listed here.

Abstract

Introduction The number of female patients with CF able to consider pregnancy has increased with improved therapies. This study explored attitudes and decision making regarding pregnancy among young women with CF. Methods Twenty-two women with CF ages 18-30 years completed semi-structured, in-person interviews exploring experiences with preconception counseling and reproductive care in the CF setting. Interviews were audio-recorded, transcribed, and coded using a thematic analysis approach. Results Participants indicated CF is a major factor in pregnancy decision making. Although women acknowledged that CF influences attitudes toward pregnancy, many expressed confusion about how CF can affect fertility/pregnancy. Many perceived disapproval from CF providers regarding pregnancy and were dissatisfied with reproductive care in the CF setting. Discussion Young female patients with CF reported poor understanding of the effect of CF on fertility and pregnancy and limited preconception counseling in CF care. Improvements in female sexual and reproductive health care in CF are warranted.

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References

MacKenzie T, Gifford A, Sabadosa K, Quinton H, Knapp E, Goss C . Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry. Ann Intern Med. 2014; 161(4):233-41. PMC: 4687404. DOI: 10.7326/M13-0636. View

Goss C, Rubenfeld G, Otto K, Aitken M . The effect of pregnancy on survival in women with cystic fibrosis. Chest. 2003; 124(4):1460-8. DOI: 10.1378/chest.124.4.1460. View

Lyon A, Bilton D . Fertility issues in cystic fibrosis. Paediatr Respir Rev. 2002; 3(3):236-40. DOI: 10.1016/s1526-0542(02)00184-7. View

Tong A, Brown M, Winkelmayer W, Craig J, Jesudason S . Perspectives on Pregnancy in Women With CKD: A Semistructured Interview Study. Am J Kidney Dis. 2015; 66(6):951-61. DOI: 10.1053/j.ajkd.2015.08.023. View

Ahmad A, Ahmed A, Patrizio P . Cystic fibrosis and fertility. Curr Opin Obstet Gynecol. 2013; 25(3):167-72. DOI: 10.1097/GCO.0b013e32835f1745. View

Edenborough F . Women with cystic fibrosis and their potential for reproduction. Thorax. 2001; 56(8):649-55. PMC: 1746112. DOI: 10.1136/thorax.56.8.649. View

Wainwright C, Elborn J, Ramsey B, Marigowda G, Huang X, Cipolli M . Lumacaftor-Ivacaftor in Patients with Cystic Fibrosis Homozygous for Phe508del CFTR. N Engl J Med. 2015; 373(3):220-31. PMC: 4764353. DOI: 10.1056/NEJMoa1409547. View

Sandelowski M . Sample size in qualitative research. Res Nurs Health. 1995; 18(2):179-83. DOI: 10.1002/nur.4770180211. View

Edenborough F, Borgo G, Knoop C, Lannefors L, Mackenzie W, Madge S . Guidelines for the management of pregnancy in women with cystic fibrosis. J Cyst Fibros. 2007; 7 Suppl 1:S2-32. DOI: 10.1016/j.jcf.2007.10.001. View

10.

Schechter M, Quittner A, Konstan M, Millar S, Pasta D, McMullen A . Long-term effects of pregnancy and motherhood on disease outcomes of women with cystic fibrosis. Ann Am Thorac Soc. 2013; 10(3):213-9. DOI: 10.1513/AnnalsATS.201211-108OC. View

11.

Plant B, Goss C, Tonelli M, McDonald G, Black R, Aitken M . Contraceptive practices in women with cystic fibrosis. J Cyst Fibros. 2008; 7(5):412-4. DOI: 10.1016/j.jcf.2008.03.001. View

12.

Patel E, Swamy G, Heine R, Kuller J, James A, Grotegut C . Medical and obstetric complications among pregnant women with cystic fibrosis. Am J Obstet Gynecol. 2014; 212(1):98.e1-9. DOI: 10.1016/j.ajog.2014.07.018. View

13.

Sawyer S, Phelan P, Bowes G . Reproductive health in young women with cystic fibrosis: knowledge, behavior and attitudes. J Adolesc Health. 1995; 17(1):46-50. DOI: 10.1016/1054-139X(94)00096-W. View

14.

Fair A, Griffiths K, Osman L . Attitudes to fertility issues among adults with cystic fibrosis in Scotland. The Collaborative Group of Scottish Adult CF Centres. Thorax. 2000; 55(8):672-7. PMC: 1745836. DOI: 10.1136/thorax.55.8.672. View

15.

Gage L . What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? A systematic review. Health Soc Work. 2012; 37(1):29-36. DOI: 10.1093/hsw/hls003. View

16.

Simcox A, Hewison J, Duff A, Morton A, Conway S . Decision-making about pregnancy for women with cystic fibrosis. Br J Health Psychol. 2008; 14(Pt 2):323-42. DOI: 10.1348/135910708X332927. View

17.

Rowe S, Heltshe S, Gonska T, Donaldson S, Borowitz D, Gelfond D . Clinical mechanism of the cystic fibrosis transmembrane conductance regulator potentiator ivacaftor in G551D-mediated cystic fibrosis. Am J Respir Crit Care Med. 2014; 190(2):175-84. PMC: 4226057. DOI: 10.1164/rccm.201404-0703OC. View

18.

Towns S . Sexuality and reproductive issues in cystic fibrosis: are we doing enough?. Paediatr Respir Rev. 2010; 11(2):73-4. DOI: 10.1016/j.prrv.2010.01.004. View

19.

Kazmerski T, Tuchman L, Borrero S, Weiner D, Pilewski J, Orenstein D . Cystic fibrosis program directors' attitudes toward sexual and reproductive health in young women with CF. Pediatr Pulmonol. 2015; 51(1):22-7. DOI: 10.1002/ppul.23321. View

20.

Tonelli M, Aitken M . Pregnancy in cystic fibrosis. Curr Opin Pulm Med. 2007; 13(6):537-40. DOI: 10.1097/MCP.0b013e3282f01120. View