Skip to main content
SpringerLink
Log in

Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing

  • Original Article
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

The purpose of the current study was to examine changes in frequency of discussion about melanoma preventive behaviors among adults who received melanoma genetic test reporting and counseling and their children and grandchildren, correspondence of frequency of discussion with intentions, and content of discussions. Participants received CDKN2A/p16 testing and counseling (N = 24, 46 % p16-positive). Discussions about preventive behaviors were assessed before testing and 1 and 6 months post-testing. Intentions to discuss preventive behaviors and perceived preparedness to discuss risk were assessed post-testing. Open-ended questions assessed content of reported discussions. Discussion of preventive behaviors declined following test reporting, with more rapid decline reported by noncarriers. There was a large gap between the percentage of participants who intended to discuss preventive behaviors and who then reported discussions 1 and 6 months after counseling. Participants felt prepared to discuss melanoma risk but also suggested resources to facilitate discussions. Genetic test reporting and counseling alone did not sustain discussions about preventive behaviors for a hereditary cancer with children and grandchildren. The gap between intentions to have discussions and reported discussions has implications for augmentation of counseling to support at-risk families’ discussions about preventive behaviors.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  • Ajzen I (1991) The theory of planned behavior. Organ Behav Hum Decis Process 50:179–211. doi:10.1016/0749-5978(91)90020-T

  • American Academy of Dermatology (2015) Melanoma: tips for finding and preventing. www.aad.org. Accessed 15 April 2015

  • American Cancer Society (2015) Can melanoma skin cancer be prevented? www.cancer.org. Accessed 15 April 2015

  • Aspinwall LG, Leaf SL, Dola ER, Kohlmann W, Leachman SA (2008) CDKN2A/p16 genetic test reporting improves early detection intentions and practices in high-risk melanoma families. Cancer Epidemiol Biomarkers Prev 17:1510–1519. doi:10.1158/1055-9965.epi-08-0010

    Article  PubMed  CAS  Google Scholar 

  • Aspinwall LG, Leaf SL, Kohlmann W, Dola ER, Leachman SA (2009) Patterns of photoprotection following CDKN2A/p16 genetic test reporting and counseling. J Am Acad Dermatol 60:745–757. doi:10.1016/j.jaad.2008.12.034

    Article  PubMed  Google Scholar 

  • Aspinwall LG, Taber JM, Leaf SL, Kohlmann W, Leachman SA (2013a) Genetic testing for hereditary melanoma and pancreatic cancer: a longitudinal study of psychological outcome. Psychooncology 22:276–289. doi:10.1002/pon.2080

    PubMed  Google Scholar 

  • Aspinwall LG, Taber JM, Leaf SL, Kohlmann W, Leachman SA (2013b) Melanoma genetic counseling and test reporting improve screening adherence among unaffected carriers 2 years later. Cancer Epidemiol Biomarkers Prev 22:1687–1697. doi:10.1158/1055-9965.epi-13-0422

    Article  PubMed  Google Scholar 

  • Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA (2014a) Perceived risk following melanoma genetic testing: a 2-year prospective study distinguishing subjective estimates from recall. J Genet Couns 23:421–437. doi:10.1007/s10897-013-9676-1

    Article  PubMed  PubMed Central  Google Scholar 

  • Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA (2014b) Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing. Genet Med. doi:10.1038/gim.2014.37

    PubMed  PubMed Central  Google Scholar 

  • Azzarello LM, Dessureault S, Jacobsen PB (2006) Sun-protective behavior among individuals with a family history of melanoma. Cancer Epidemiol Biomarkers Prev 15:142–145. doi:10.1158/1055-9965.epi-05-0478

    Article  PubMed  Google Scholar 

  • Balk SJ (2011) Ultraviolet radiation: a hazard to children and adolescents. Pediatrics 127:588–597. doi:10.1542/peds.2010-3501

    Article  PubMed  Google Scholar 

  • Barsevick AM et al (2008) Intention to communicate BRCA1/BRCA2 genetic test results to the family. J Fam Psychol 22:303

    Article  PubMed  Google Scholar 

  • Cannon-Albright LA et al (1992) Assignment of a locus for familial melanoma, MLM, to chromosome 9p13-p22. Science 258:1148–1152

    Article  PubMed  CAS  Google Scholar 

  • Champine M, Kohlmann W, Leachman SA (2013) Genetic counseling and testing for hereditary melanoma: an updated guide for dermatologists. Hered Genet S2:004

    Google Scholar 

  • Costalas JW, Itzen M, Malick J, Babb JS, Bove B, Godwin AK, Daly MB (2003) Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience. In: American journal of medical genetics part C: seminars in medical genetics, vol 1. Wiley Online Library, pp 11-18

  • Daly MB, Barsevick A, Miller SM, Buckman R, Costalas J, Montgomery S, Bingler R (2001) Communicating genetic test results to the family: a six-step, skills-building strategy. Fam Community Health 24:13–26

    Article  PubMed  CAS  Google Scholar 

  • Dimatteo MR (2004) The role of effective communication with children and their families in fostering adherence to pediatric regimens. Patient Educ Couns 55:339–344. doi:10.1016/j.pec.2003.04.003

    Article  PubMed  Google Scholar 

  • Fehniger J, Lin F, Beattie MS, Joseph G, Kaplan C (2013) Family communication of BRCA1/2 results and family uptake of BRCA1/2 testing in a diverse population of BRCA1/2 carriers. J Genet Couns 22:603–612. doi:10.1007/s10897-013-9592-4

    Article  PubMed  Google Scholar 

  • Florell SR et al (2005) Population-based analysis of prognostic factors and survival in familial melanoma. J Clin Oncol 23:7168–7177

    Article  PubMed  Google Scholar 

  • Gaff CL et al (2007) Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet 15:999–1011. doi:10.1038/sj.ejhg.5201883

    Article  PubMed  Google Scholar 

  • Geller AC et al (2003) Skin cancer prevention and detection practices among siblings of patients with melanoma. J Am Acad Dermatol 49:631–638

    Article  PubMed  Google Scholar 

  • Glanz K et al (2013) Melanoma genetic testing, counseling, and adherence to skin cancer prevention and detection behaviors. Cancer Epidemiol Biomarkers Prev 22:607–614. doi:10.1158/1055-9965.epi-12-1174

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • Goldstein AM et al (2007) Features associated with germline CDKN2A mutations: a GenoMEL study of melanoma-prone families from three continents. J Med Genet 44:99–106

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • Hallowell N, Ardern‐Jones A, Eeles R, Foster C, Lucassen A, Moynihan C, Watson M (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 67:492–502

    Article  PubMed  CAS  Google Scholar 

  • Hamilton RJ, Bowers BJ, Williams JK (2005) Disclosing genetic test results to family members. J Nurs Scholarsh 37:18–24

    Article  PubMed  Google Scholar 

  • Hansen CB, Wadge LM, Lowstuter K, Boucher K, Leachman SA (2004) Clinical germline testing for melanoma. Lancet Oncol 5:314–419

    Article  PubMed  CAS  Google Scholar 

  • Harris JN, Hay J, Kuniyuki A, Asgari MM, Press N, Bowen DJ (2010) Using a family systems approach to investigate cancer risk communication within melanoma families. Psycho-Oncology 19:1102–1111

    Article  PubMed  PubMed Central  Google Scholar 

  • Hay J, Ostroff J, Martin A, Serle N, Soma S, Mujumdar U, Berwick M (2005) Skin cancer risk discussions in melanoma-affected families. J Cancer Educ 20:240–246. doi:10.1207/s15430154jce2004_13

    Article  PubMed  Google Scholar 

  • Hay J, Shuk E, Brady MS, Berwick M, Ostroff J, Halpern A (2008) Family communication after melanoma diagnosis. Arch Dermatol 144:553–554. doi:10.1001/archderm.144.4.553

    Article  PubMed  PubMed Central  Google Scholar 

  • Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277–1288. doi:10.1177/1049732305276687

    Article  PubMed  Google Scholar 

  • Kamb A et al (1994) Analysis of the p16 gene (CDKN2) as a candidate for the chromosome 9p melanoma susceptibility locus. Nat Genet 8:23–26. doi:10.1038/ng0994-22

    Article  PubMed  CAS  Google Scholar 

  • Kefford R et al (1999) Counseling and DNA testing for individuals perceived to be genetically predisposed to melanoma: a consensus statement of the melanoma genetics consortium. J Clin Oncol 17:3245–3251

    PubMed  CAS  Google Scholar 

  • Kefford R et al (2002) Genetic testing for melanoma. Lancet Oncol 3:653–654

    Article  PubMed  Google Scholar 

  • Lafreniere D, Bouchard K, Godard B, Simard J, Dorval M (2013) Family communication following BRCA1/2 genetic testing: a close look at the process. J Genet Couns 22:323–335. doi:10.1007/s10897-012-9559-x

    Article  PubMed  Google Scholar 

  • Leachman SA et al (2009) Selection criteria for genetic assessment of patients with familial melanoma. J Am Acad Dermatol 61:677.e671-677. doi:10.1016/j.jaad.2009.03.016

  • Leaf SL, Aspinwall LG, Leachman SA (2010) God and agency in the era of molecular medicine: religious beliefs predict sun-protection behaviors following melanoma genetic testing reporting. Arch Psychol Relig 32:87–112. doi:10.1163/008467210X12626615185784

    Article  Google Scholar 

  • McCann S, MacAuley D, Barnett Y, Bunting B, Bradley A, Jeffers L, Morrison PJ (2009) Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study. Psychooncology 18:1208–1215. doi:10.1002/pon.1487

    Article  PubMed  Google Scholar 

  • Modi AC et al (2012) Pediatric self-management: a framework for research, practice, and policy. Pediatrics 129:e473–485. doi:10.1542/peds.2011-1635

    Article  PubMed  Google Scholar 

  • Montgomery SV et al (2013) Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial. Fam Cancer 12:537–546. doi:10.1007/s10689-013-9609-z

    Article  PubMed  PubMed Central  Google Scholar 

  • Niendorf KB, Tsao H (2006) Cutaneous melanoma: family screening and genetic testing. Dermatol Ther 19:1–8. doi:10.1111/j.1529-8019.2005.00050.x

    Article  PubMed  Google Scholar 

  • Oliveria SA, Saraiya M, Geller AC, Heneghan MK, Jorgensen C (2006) Sun exposure and risk of melanoma. Arch Dis Child 91:131–138. doi:10.1136/adc.2005.086918

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • Oliveria SA et al (2013) Melanoma survivors: health behaviors, surveillance, psychosocial factors, and family concerns. Psychooncology 22:106–116. doi:10.1002/pon.2059

    Article  PubMed  Google Scholar 

  • Pustisek N, Sikanic-Dugic N, Hirsl-Hecej V, Domljan ML (2010) Acute skin sun damage in children and its consequences in adults. Coll Anthropol 34:233–237

    Google Scholar 

  • Strauss A, Corbin JM (1990) Basics of qualitative research: grounded theory procedures and techniques. Sage Publications, Thousand Oaks

    Google Scholar 

  • United States Census Bureau (2013) American community survey. http://www.census.gov/acs/www/. Accessed 13 Apr 2015

  • University of Utah (2014) Utah population database. http://healthcare.utah.edu/huntsmancancerinstitute/research/updb/. Accessed 10 Nov 2014

Download references

Acknowledgments

The authors acknowledge the generous participation of study participants; Marybeth Hart, Erin Dola, and Lisa Wadge for contributions to study development; and Amber Kostial, Emily Bullough, Michelle Welch, Hoda Wali, Candace Larson, and Taylor Haskell for service as study/clinic coordinators. This work was supported by a Funding Incentive Seed Grant, University of Utah; Huntsman Cancer Foundation; Tom C. Mathews, Jr. Familial Melanoma Research Clinic endowment; Pedigree and Population Resource of Huntsman Cancer Institute (HCI); Utah Population Database; Utah Cancer Registry funded by N01-PC-35141 from the National Cancer Institute (NCI) SEER Program and the Utah State Department of Health and University of Utah. The authors acknowledge the use of core facilities supported by the NCI Cancer Center Support Grant 5P30CA420-14 awarded to HCI and the genetic counseling core supported by Huntsman Cancer Foundation. Investigators (LGA, SAL, TKS) were supported by NCI (R01 CA158322-01). The content is solely the responsibility of the authors and does not necessarily represent the official views of NCI or the National Institutes of Health.

Compliance with ethics guidelines

Yelena Wu, Lisa G. Aspinwall, Timothy Michaelis, Tammy Stump, and Wendy Kohlmann declare that they have no conflict of interest.

Sancy Leachman serves on a Medical and Scientific Advisory Board for Myriad Genetics, for which she has received an honorarium. She collaborated with Myriad to validate an assay that is unrelated to research reported here.

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).

Informed consent was obtained from all patients for being included in the study.

Author information

Authors and Affiliations

  1. Division of Public Health, Department of Family and Preventive Medicine, University of Utah, 375 Chipeta Way, Suite A, Salt Lake City, UT, 84108, USA

    Yelena P. Wu

  2. Huntsman Cancer Institute, 2000 Circle of Hope Drive, Salt Lake City, UT, 84112, USA

    Yelena P. Wu & Wendy G. Kohlmann

  3. Department of Psychology, University of Utah, 380 South 1530 East, Salt Lake City, UT, 84112, USA

    Lisa G. Aspinwall & Tammy Stump

  4. School of Medicine, University of Utah, 30 North 1900 East, Salt Lake City, UT, 84132, USA

    Timothy C. Michaelis

  5. Department of Dermatology, Oregon Health and Science University, 3303 Southwest Bond Avenue, Portland, OR, 97239, USA

    Sancy A. Leachman

Authors
  1. Yelena P. Wu
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Lisa G. Aspinwall
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Timothy C. Michaelis
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Tammy Stump
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Wendy G. Kohlmann
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Sancy A. Leachman
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Yelena P. Wu.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Wu, Y.P., Aspinwall, L.G., Michaelis, T.C. et al. Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing. J Community Genet 7, 21–31 (2016). https://doi.org/10.1007/s12687-015-0243-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-015-0243-3

Keywords

Search

Navigation