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Sexuality and Disability

, Volume 37, Issue 1, pp 15–23 | Cite as

Assessment of Sexual Reproductive Health Knowledge Amongst Patients with Cystic Fibrosis

  • C. WilsonEmail author
  • Jamie Duckers
  • Lorraine Speight
  • Dawn Lau
  • Robert Ian Ketchell
  • Andrea Edwards
Original Paper
  • 28 Downloads

Abstract

This study is concerned with evaluating cystic fibrosis (CF) annual review practice. More precisely, we wanted to know if we are utilizing genetic counseling services and identifying poor knowledge of sexual reproductive health at annual review. We conducted short interviews with 21 CF patients at annual review regarding genetic counseling knowledge and perception. Patient responses were documented, analyzed and coded using a simple thematic analysis to précis the content. Immediately post-interview, patients were asked to complete a CF questionnaire comprised of nine questions, testing knowledge of the science of Mendelian genetics, contraceptive needs and fertility. Knowledge was then compared to responses documented at annual review. Emerging themes from interviews included: poor knowledge and a need for more information regarding what genetic counseling involves, a positive perception and experience of genetic counseling for those who had attended, and partner anxiety related to carrier testing. The percentage of patients who reported they were aware of the CF fertility and genetic issues was 95%, however, questionnaire scores ranged from 0 to 9/9 (mean 4.8 SD [2.2]). 57% of patients had received genetic counseling. These patients had a statistically significantly higher score 6.2 (1.5) versus those who had not 2.9 (1.3) p < 0.001. The All Wales Adult CF Centre annual review practice is insufficient to identify patients who may benefit from further education on reproductive health. Traditionally these domains have been granted less significance. However, as life expectancy, quality of life and reproductive assistive techniques improve, ensuring appropriate patient knowledge is of greater importance.

Keywords

Cystic fibrosis Genetic counseling Reproduction Sexual health Fertility Genetics United Kingdom 

Notes

Acknowledgements

Thank you to all the members of staff at the All Wales Adult Cystic Fibrosis Unit.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

References

  1. 1.
    Davis, P.B., Drumm, M., Konstan, M.W.: Cystic fibrosis. Am. J. Respir. Crit. Care Med. 154, 1229–1256 (1996)CrossRefPubMedGoogle Scholar
  2. 2.
    Ahmad, A., Ahmed, A., Patrizio, P.: Cystic fibrosis and fertility. Curr. Opin. Obstet. Gynecol. 25, 167–172 (2013)CrossRefPubMedGoogle Scholar
  3. 3.
    UK Cystic Fibrosis Registry 2016 Annual Data Report. Cystic Fibrosis Trust 2017Google Scholar
  4. 4.
    Heltshe, S.L., Taylor-Cousar, J.L.: Let’s talk about sex: behaviors, experience and health care utilization in young women with CF. J. Cyst. Fibros. (2017).  https://doi.org/10.1016/j.jcf.2017.11.006 Google Scholar
  5. 5.
    Sawyer, S.M., Farrant, B., Cerritelli, B., Wilson, J.: A survey of sexual and reproductive health in men with cystic fibrosis: new challenges for adolescent and adult services. Thorax 60, 326–330 (2005)CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Rodgers, H.C., Baldwin, D.R., Knox, A.J.: Questionnaire survey of male infertility in cystic fibrosis. Respir. Med. 94, 1002–1003 (2000)CrossRefPubMedGoogle Scholar
  7. 7.
    Siklosi, K.R., et al.: Development, validation, and implementation of a questionnaire assessing disease knowledge and understanding in adult cystic fibrosis patients. J. Cyst. Fibros. 9, 400–405 (2010)CrossRefPubMedGoogle Scholar
  8. 8.
    Korzeniewska, A., Grzelewski, T., Jerzynska, J., Majak, P., Soloniewicz, A., Stelmach, W., et al.: Sexual and reproductive health knowledge in cystic fibrosis female patients and their parents. J. Sex. Med. 6(3), 770–776 (2009)CrossRefPubMedGoogle Scholar
  9. 9.
    Conway, S.P., Pond, M.N., Watson, A., Hamnett, T.: Knowledge of adult patients with cystic fibrosis about their illness. Thorax 51, 34–38 (1996)CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Madge, S.L., Carr, S.B.: Reproductive health in males with cystic fibrosis: knowledge, attitudes, and experience of patients and parents. Pediatr. Pulmonol. 27, 293 (1999)CrossRefPubMedGoogle Scholar
  11. 11.
    Sawyer, S.M., Tully, M.A., Dovey, M.E., Colin, A.A.: Reproductive health in males with cystic fibrosis: knowledge, attitudes, and experiences of patients and parents. Pediatr. Pulmonol. 25, 226–230 (1998)CrossRefPubMedGoogle Scholar
  12. 12.
    Heltshe, S.L., Godfrey, E.M., Josephy, T., et al.: Pregnancy among cystic fibrosis women in the era of CFTR modulators. J. Cyst. Fibros. 16(6), 687–694 (2017)CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Dodge, J.A., Burton, L., Cull, A., McCrae, W.M.: Effectiveness of counselling in cystic fibrosis. Patient Couns. Health Educ. 1, 8–12 (1978)CrossRefPubMedGoogle Scholar
  14. 14.
    Kazmerski, T.M., Sawicki, G.S., et al.: Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis. J. Cyst. Fibros. 14, 57–60 (2018)CrossRefGoogle Scholar
  15. 15.
    Kazmerski, T.M., Sawicki, G.S., et al.: Sexual and reproductive health care utilization and preferences reported by young women with cystic fibrosis. J. Cyst. Fibros. 17, 64–70 (2018)CrossRefPubMedGoogle Scholar
  16. 16.
    Kazmerski, T.M., Borrero, S., Tuchman, L.K., Weiner, D.J., Pilewski, J.M., Orenstein, D.M., et al.: Provider and patient attitudes regarding sexual health in young women with cystic fibrosis. Pediatrics (2016).  https://doi.org/10.1542/peds.2015-4452 PubMedGoogle Scholar
  17. 17.
    Frayman, K.B., Sawyer, S.M.: Sexual and reproductive health in cystic fibrosis: a life-course perspective. Lancet Respir. Med. 3, 70–86 (2015)CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.All Wales Cystic Fibrosis CentreUniversity Hospital LlandoughPenarthUK
  2. 2.University Hospital of WalesCardiffUK

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