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Testicular Cancer and Genetics Knowledge Among Familial Testicular Cancer Family Members

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Purpose

It was our aim to determine baseline levels of testicular cancer and genetics knowledge among members of families with Familial Testicular Cancer (FTC).

Methods

This is a sub-study of an ongoing National Cancer Institute (NCI) multidisciplinary, etiologically-focused, cross-sectional study of FTC. We evaluated 258 male and female participants including testicular cancer (TC) survivors, blood relatives and spouses to assess factors associated with a Genetic Knowledge Scale (GKS) and Testicular Cancer Knowledge Scale (TCKS).

Results

Knowledge levels were generally low, with genetic knowledge lower than TC knowledge (p < 0.01). Men with a personal TC history scored highest on TC knowledge, while gender, age and education differentially influenced knowledge levels, particularly among unaffected relatives.

Conclusions

Prior to identifying FTC susceptibility genes, we recommend tailoring FTC genetic education to the different informational needs of TC survivors, their spouses and relatives, in preparation for the day when clinical susceptibility testing may be available.

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Acknowledgements

This research was supported by the Intramural Research Program of the National Cancer Institute, Division of Cancer Epidemiology and Genetics, and by support services contracts NO2-CP-11019-50 and NO2-CP-65504-50 with Westat. In addition to thanking Richard Moser of the National Cancer Institute, Division of Cancer Control and Population Studies for consultations regarding statistical analyses and our colleagues at Westat, particularly Ron Kase, Beth Mittl, Jennifer Restrepo, Brenda Sun and Rissah Watkins, we wish to acknowledge the contributions of Joan Kramer and Lori Peterson Court, formerly with NCI’s Clinical Genetics Branch, and Susan Pfeiffer and Claudia Soho, formerly of Westat, who helped during various stages of this study. Last, but not least, we are deeply indebted to the generous and essential contributions of our volunteer study participants for completing questionnaires, undergoing clinical evaluations, and providing biological samples for translational research purposes, to support the communal effort aimed at identifying genetic contributions to familial testicular cancer.

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Authors and Affiliations

  1. Clinical Genetics Branch (CGB), Division of Cancer Epidemiology and Genetics (DCEG), National Cancer Institute (NCI), National Institutes of Health (NIH), Department of Health and Human Services (DHHS), 6120 Executive Blvd., EPS 7026, Rockville, MD, 20852, USA

    June A. Peters, Deliya R. Banda Ryan, Jennifer T. Loud, Larissa Korde & Mark H. Greene

  2. RAND Corporation, 4570 Fifth Ave, Room 4422, Pittsburgh, PA, USA

    Ellen B. Beckjord

  3. Westat, Rockville, MD, USA

    Ann G. Carr

  4. Health Outcomes and Behavior Program, Moffitt Cancer Center, Tampa, FL, USA

    Susan T. Vadaparampil

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  1. June A. Peters
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  2. Ellen B. Beckjord
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  3. Deliya R. Banda Ryan
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Correspondence to June A. Peters.

Additional information

June A. Peters and Ellen B. Beckjord, “Co-First Authors.” Each contributed equally to the work reported herein.

Work on this manuscript was conducted while Dr. Beckjord was in the Cancer Prevention Fellowship Program at the National Cancer Institute.

As this manuscript was going to press, a special issue of the Journal of Genetic Counseling focusing on “Genetics in Health Practice and Education” was published. As this topic is related to our paper, we direct interested readers to relevant papers in the Volume 17, Number 2, 2008 issue of the J of Genet Counsel.

Appendix 1

Appendix 1

Table 8 TCKS and GKS Questions and Scores by Study Sub-group
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Peters, J.A., Beckjord, E.B., Banda Ryan, D.R. et al. Testicular Cancer and Genetics Knowledge Among Familial Testicular Cancer Family Members. J Genet Counsel 17, 351–364 (2008). https://doi.org/10.1007/s10897-008-9153-4

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