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Correspondence |

Educating the Adolescent and Young Adult With Cystic Fibrosis About Their Reproductive Risks and OptionsEducating Young Adults With Cystic Fibrosis FREE TO VIEW

Milner Owens Staub, BS; Kevin Leon, MD; Nathaniel H. Robin, MD
Author and Funding Information

From The University of Alabama at Birmingham School of Medicine (Ms Staub); and Department of Medicine (Dr Leon), Division of Pulmonary, Allergy and Critical Care, and Departments of Genetics, Pediatrics, and Surgery (Dr Robin), The University of Alabama at Birmingham.

Correspondence to: Nathaniel H. Robin, MD, Department of Genetics and Pediatrics, The University of Alabama at Birmingham, Kaul 210, 1720 2nd Ave S, Birmingham, AL 35294-0024; e-mail: nrobin@uab.edu


Financial/nonfinancial disclosures: The authors have reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2013;143(2):580-581. doi:10.1378/chest.12-2091
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Published online
To the Editor:

We conducted a follow-up to our 2008 study assessing the genetic and reproductive knowledge of adolescents and young adults with cystic fibrosis (CF).1 The original study showed that only 33% of patients with CF knew that two carriers had a 25% chance of having a child with CF and that 25% knew that two carriers have a 50% chance of having a carrier child. Here, we report our effort to determine the efficacy of recent educational efforts made by organizations like the Cystic Fibrosis Foundation, who launched their 2010 webcast series to educate patients and families about CF.2

We used a 24-question survey. Twelve questions assessed demographics, such as age, sex, education level, and baseline health. Twelve questions assessed patient knowledge of genetics, inheritance, reproduction, and health concerns for patients with CF wanting to reproduce. We then provided each patient (N =40) with a trifold, color brochure addressing these topics and reassessed patient knowledge with patients able to reference the brochure. All study protocols and materials were approved by The University of Alabama (UAB) Institutional Review Board (Protocol X100704010).

We found that 23% of patients knew that two carriers have a 75% chance of having a child who does not have CF and that 40% knew that the recurrence risk for two carriers to have a second child with CF was 25% (Table 1). These numbers increased to 38% and 65%, respectively, with the brochure. Fifty percent of patients knew that among patients with CF it is more difficult for the male sex to have children than for the female sex, and 47.5% knew that the male sex are infertile because sperm are unable to exit the testicles. These numbers increased to 75% and 87.5%, respectively, with the brochure.

Table Graphic Jump Location
Table 1 —Survey Questions and Number of Correct Answers Before and After Access to Educational Brochure

Data are presented as No. (%), unless otherwise indicated. CF = cystic fibrosis.

a 

More than one answer was deemed correct. The total sum of both answers is used in this table.

The total percentage of correct knowledge responses showed an average of 40% for patients for the first survey assessing baseline knowledge. An average of 71% was achieved for the second survey given with the brochure as a reference, a difference of 31% (P < .0001).

This study showed that despite recent efforts to improve patient education, there is no change in patients’ baseline knowledge of their disease, at least in the UAB CF population. In 2010, 47.5% of patients with CF were adults.3 As survival rates improve and patients with CF desire to have children, it is important that they be educated on the risks and challenges reproduction poses. This study showed that inexpensive paper brochures are a potentially effective way to address this deficit in patient knowledge.

Acknowledgments

Role of sponsors: The sponsor had no role in the design of the study, the collection and analysis of the data, or in the preparation of the manuscript.

Houser GH, Holt CL, Clancy JP, et al. Genetic and reproductive knowledge among adolescents and adults with cystic fibrosis. Chest. 2008;133(6):1533. [CrossRef] [PubMed]
 
Marshall BC, Penland CM, Hazle L, et al. Cystic fibrosis foundation: achieving the mission. Respir Care. 2009;54(6):788-795. [CrossRef] [PubMed]
 
Cystic Fibrosis Foundation. Patient registry: annual data report 2010. Cystic Fibrosis Foundation website.http://www.cff.org/UploadedFiles/LivingWithCF/CareCenterNetwork/PatientRegistry/2010-Patient-Registry-Report.pdf. Accessed April 3, 2012.
 

Figures

Tables

Table Graphic Jump Location
Table 1 —Survey Questions and Number of Correct Answers Before and After Access to Educational Brochure

Data are presented as No. (%), unless otherwise indicated. CF = cystic fibrosis.

a 

More than one answer was deemed correct. The total sum of both answers is used in this table.

References

Houser GH, Holt CL, Clancy JP, et al. Genetic and reproductive knowledge among adolescents and adults with cystic fibrosis. Chest. 2008;133(6):1533. [CrossRef] [PubMed]
 
Marshall BC, Penland CM, Hazle L, et al. Cystic fibrosis foundation: achieving the mission. Respir Care. 2009;54(6):788-795. [CrossRef] [PubMed]
 
Cystic Fibrosis Foundation. Patient registry: annual data report 2010. Cystic Fibrosis Foundation website.http://www.cff.org/UploadedFiles/LivingWithCF/CareCenterNetwork/PatientRegistry/2010-Patient-Registry-Report.pdf. Accessed April 3, 2012.
 
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