nach oben

Erschienen in:

19.01.2018 | Original Research

Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress

verfasst von: Tammy K. Stump, Lisa G. Aspinwall, Wendy Kohlmann, Marjan Champine, Jamie Hauglid, Yelena P. Wu, Emily Scott, Pamela Cassidy, Sancy A. Leachman

Erschienen in: Journal of Genetic Counseling | Ausgabe 4/2018

Einloggen, um Zugang zu erhalten

Abstract

Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the CDKN2A/p16 mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (M_age = 12.4, SD = 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (n = 9) and noncarriers (n = 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child’s greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing CDKN2A/p16 genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes.

Nur mit Berechtigung zugänglich

Aspinwall, L. G., Leaf, S. L., Dola, E. R., Kohlmann, W., & Leachman, S. A. (2008). CDKN2A/p16 genetic test reporting improves early detection intentions and practices in high-risk melanoma families. Cancer Epidemiology, Biomarkers & Prevention, 17(6), 1510–1519. https://doi.org/10.1158/1055-9965.EPI-08-0010.CrossRef

Aspinwall, L. G., Stump, T. K., Taber, J. M., Drummond, D., Kohlmann, W., Champine, M., & Leachman, S. A. (2017). Genetic test reporting of CDKN2A provides informational and motivational benefits for managing melanoma risk. Transl Behav Med. (in press).

Aspinwall, L. G., Taber, J. M., Kohlmann, W., Leaf, S. L., & Leachman, S. A. (2014). Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing. Genetics in Medicine, 16(11), 846–853. https://doi.org/10.1038/gim.2014.37.CrossRefPubMedPubMedCentral

Aspinwall, L. G., Taber, J. M., Leaf, S. L., Kohlmann, W., & Leachman, S. A. (2013a). Genetic testing for hereditary melanoma and pancreatic cancer: a longitudinal study of psychological outcome. Psychooncology, 22(2), 276–289. https://doi.org/10.1002/pon.2080.PubMedCrossRef

Aspinwall, L. G., Taber, J. M., Leaf, S. L., Kohlmann, W., & Leachman, S. A. (2013b). Melanoma genetic counseling and test reporting improve screening adherence among unaffected carriers 2 years later. Cancer Epidemiology, Biomarkers & Prevention, 22(10), 1687–1697. https://doi.org/10.1158/1055-9965.EPI-13-0422.CrossRef

Begg, C. B., Orlow, I., Hummer, A. J., Armstrong, B. K., Kricker, A., Marrett, L. D., et al. (2005). Lifetime risk of melanoma in CDKN2A mutation carriers in a population-based sample. Journal of the National Cancer Institute, 97(20), 1507–1515. https://doi.org/10.1093/jnci/dji312.CrossRefPubMed

Bergenmar, M., Hansson, J., & Brandberg, Y. (2009). Family members’ perceptions of genetic testing for malignant melanoma—a prospective interview study. European Journal of Oncology Nursing, 13(2), 74–80. https://doi.org/10.1016/j.ejon.2008.12.003.CrossRefPubMed

Bibbins-Domingo, K., Grossman, D. C., Curry, S. J., Davidson, K. W., Ebell, M., Epling, J. W., et al. (2016). Screening for skin cancer: US Preventive Services Task Force recommendation statement. JAMA, 316(4), 429–435. https://doi.org/10.1001/jama.2016.8465.CrossRefPubMed

Bishop, D. T., Demenais, F., Goldstein, A. M., Bergman, W., Bishop, J. N., Bressac-de Paillerets, B., et al. (2002). Geographical variation in the penetrance of CDKN2A mutations for melanoma. Journal of the National Cancer Institute, 94(12), 894–903. https://doi.org/10.1093/jnci/94.12.894.CrossRefPubMed

Borry, P., Howard, H. C., Senecal, K., & Avard, D. (2010). Health-related direct-to-consumer genetic testing: a review of companies’ policies with regard to genetic testing in minors. Familial Cancer, 9(1), 51–59. https://doi.org/10.1007/s10689-009-9253-9.CrossRefPubMed

Botkin, J. R., Belmont, J. W., Berg, J. S., Berkman, B. E., Bombard, Y., Holm, I. A., et al. (2015). Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 97(1), 6–21. https://doi.org/10.1016/j.ajhg.2015.05.022.CrossRefPubMedPubMedCentral

Brandi, M. L., Gagel, R. F., Angeli, A., Bilezikian, J. P., Beck-Peccoz, P., Bordi, C., et al. (2001). Guidelines for diagnosis and therapy of MEN type 1 and type 2. The Journal of Clinical Endocrinology and Metabolism, 86(12), 5658–5671. https://doi.org/10.1210/jcem.86.12.8070.CrossRefPubMed

Buller, D. B., Cokkinides, V., Hall, H. I., Hartman, A. M., Saraiya, M., Miller, E., et al. (2011). Prevalence of sunburn, sun protection, and indoor tanning behaviors among Americans: review from national surveys and case studies of 3 states. Journal of the American Academy of Dermatology, 65(5 Suppl 1), S114–S123. https://doi.org/10.1016/j.jaad.2011.05.033.PubMedCrossRef

Burke, W., Daly, M., Garber, J., Botkin, J., Kahn, M. J. E., Lynch, P., et al. (1997). Recommendations for follow-up care of individuals with an inherited predisposition to cancer: II. BRCA1 and BRCA2. JAMA, 277, 997–1003. https://doi.org/10.1001/jama.1997.03540360065034.CrossRefPubMed

Cappelli, M., Verma, S., Korneluk, Y., Hunter, A., Tomiak, E., Allanson, J., et al. (2005). Psychological and genetic counseling implications for adolescent daughters of mothers with breast cancer. Clinical Genetics, 67(6), 481–491. https://doi.org/10.1111/j.1399-0004.2005.00456.x.CrossRefPubMed

Cokkinides, V., Weinstock, M., Glanz, K., Albano, J., Ward, E., & Thun, M. (2006). Trends in sunburns, sun protection practices, and attitudes toward sun exposure protection and tanning among US adolescents, 1998–2004. Pediatrics, 118(3), 853–864. https://doi.org/10.1542/peds.2005-3109.CrossRefPubMed

Dadlani, C., & Orlow, S. J. (2008). Planning for a brighter future: a review of sun protection and barriers to behavioral change in children and adolescents. Dermatology Online Journal, 14(9), 1.PubMed

Gandini, S., Sera, F., Cattaruzza, M. S., Pasquini, P., Picconi, O., Boyle, P., et al. (2005). Meta-analysis of risk factors for cutaneous melanoma: II. Sun exposure. Eur J Cancer, 41(1), 45–60. https://doi.org/10.1016/j.ejca.2004.10.016.CrossRefPubMed

Geller, A. C., Colditz, G., Oliveria, S., Emmons, K., Jorgensen, C., Aweh, G. N., & et al. (2002). Use of sunscreen, sunburning rates, and tanning bed use among more than 10 000 US children and adolescents. Pediatrics, 109(6), 1009–1014.

Geller, A. C., Swetter, S. M., Brooks, K., Demierre, M. F., & Yaroch, A. L. (2007). Screening, early detection, and trends for melanoma: current status (2000–2006) and future directions. Journal of the American Academy of Dermatology, 57(4), 555–572; quiz 573-556. https://doi.org/10.1016/j.jaad.2007.06.032.CrossRefPubMed

Glanz, K., Yaroch, A. L., Dancel, M., Saraiya, M., Crane, L. A., Buller, D. B., et al. (2008). Measures of sun exposure and sun protection practices for behavioral and epidemiologic research. Archives of Dermatology, 144(2), 217–222. https://doi.org/10.1001/archdermatol.2007.46.CrossRefPubMed

Glenn, B. A., Lin, T., Chang, L. C., Okada, A., Wong, W. K., Glanz, K., et al. (2015). Sun protection practices and sun exposure among children with a parental history of melanoma. Cancer Epidemiology, Biomarkers & Prevention, 24(1), 169–177. https://doi.org/10.1158/1055-9965.EPI-14-0650.CrossRef

Half, E., Bercovich, D., & Rozen, P. (2009). Familial adenomatous polyposis. Orphanet Journal of Rare Diseases, 4, 22. https://doi.org/10.1186/1750-1172-4-22.CrossRefPubMedPubMedCentral

Haluza, D., Simic, S., Holtge, J., Cervinka, R., & Moshammer, H. (2016). Gender aspects of recreational sun-protective behavior: results of a representative, population-based survey among Austrian residents. Photodermatology, Photoimmunology & Photomedicine, 32(1), 11–21. https://doi.org/10.1111/phpp.12213.CrossRef

Hay, J., Shuk, E., Brady, M. S., Berwick, M., Ostroff, J., & Halpern, A. (2008). Family communication after melanoma diagnosis. Archives of Dermatology, 144(4), 553–554. https://doi.org/10.1001/archderm.144.4.553.CrossRefPubMedPubMedCentral

Kasparian, N. A., Meiser, B., Butow, P. N., Simpson, J. M., & Mann, G. J. (2009). Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genetics in Medicine, 11(4), 265–278. https://doi.org/10.1097/GIM.0b013e3181993175.CrossRefPubMed

Kovacs, M. (2010). Children’s Depression Inventory 2™(CDI 2). North Tonawanda, NY: Multi-Health Systems.

Lerman, C., Daly, M., Masny, A., & Balshem, A. (1994). Attitudes about genetic testing for breast-ovarian cancer susceptibility. Journal of Clinical Oncology, 12(4), 843–850. https://doi.org/10.1200/JCO.1994.12.4.843.CrossRefPubMed

Spielberger, C., & Edwards, C. (1973). Preliminary test manual for the State-trait Anxiety Inventory for Children: (“How-I-feel questionnaire”). Palo Alto, CA: Consulting Psychologists Press.

Taber, J. M., Aspinwall, L. G., Kohlmann, W., Dow, R., & Leachman, S. A. (2010). Parental preferences for CDKN2A/p16 testing of minors. Genetics in Medicine, 12(12), 823–838. https://doi.org/10.1097/GIM.0b013e3181f87278.CrossRefPubMed

Taber, J. M., Aspinwall, L. G., Stump, T. K., Kohlmann, W., Champine, M., & Leachman, S. A. (2015). Genetic test reporting enhances understanding of risk information and acceptance of prevention recommendations compared to family history-based counseling alone. Journal of Behavioral Medicine, 38(5), 740–753. https://doi.org/10.1007/s10865-015-9648-z.CrossRefPubMedPubMedCentral

UV Index: Annual Time Series, 2012. (2013) Retrieved from http://www.cpc.ncep.noaa.gov/products/stratosphere/uv_index/uv_annual.shtml.

Whiteman, D. C., Whiteman, C. A., & Green, A. C. (2001). Childhood sun exposure as a risk factor for melanoma: a systematic review of epidemiologic studies. Cancer Causes & Control, 12(1), 69–82.CrossRef

Wu, Y. P., Aspinwall, L. G., Michaelis, T. C., Stump, T., Kohlmann, W. G., & Leachman, S. A. (2016a). Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing. Journal of Community Genetics, 7(1), 21–31. https://doi.org/10.1007/s12687-015-0243-3.CrossRefPubMed

Wu, Y. P., Aspinwall, L. G., Nagelhout, E., Kohlmann, W., Kaphingst, K. A., Homburger, S., et al. (2016b). Development of an educational program integrating concepts of genetic risk and preventive strategies for children with a family history of melanoma. Journal of Cancer Education. https://doi.org/10.1007/s13187-016-1144-9.

Titel: Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress
verfasst von: Tammy K. Stump
Lisa G. Aspinwall
Wendy Kohlmann
Marjan Champine
Jamie Hauglid
Yelena P. Wu
Emily Scott
Pamela Cassidy
Sancy A. Leachman
Publikationsdatum: 19.01.2018
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 4/2018
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-017-0185-5

Neu im Fachgebiet Gynäkologie und Geburtshilfe

Nodal-negativ nach neoadjuvanter Chemo: Axilladissektion verzichtbar?

03.05.2024 Mammakarzinom Nachrichten

Wenn bei Mammakarzinomen durch eine neoadjuvante Chemotherapie ein Downstaging von nodal-positiv zu nodal-negativ gelingt, scheint es auch ohne Axilladissektion nur selten zu axillären Rezidiven zu kommen.

Rezidivierender Peritonsillarabszess nach Oralsex

02.05.2024 Peritonsillarabszess Kasuistik

Die erotischen Dimensionen von Peritonsillarabszessen scheinen eng begrenzt zu sein. Das heißt aber nicht, solche Abszesse und Erotik hätten nichts miteinander gemein, wie ein Fallbericht verdeutlicht.

Endlich: Zi zeigt, mit welchen PVS Praxen zufrieden sind

IT für Ärzte Nachrichten

Darauf haben viele Praxen gewartet: Das Zi hat eine Liste von Praxisverwaltungssystemen veröffentlicht, die von Nutzern positiv bewertet werden. Eine gute Grundlage für wechselwillige Ärzte und Psychotherapeuten.

Ambulantisierung: Erste Erfahrungen mit dem Hybrid-DRG

02.05.2024 DCK 2024 Kongressbericht

Die Hybrid-DRG-Verordnung soll dazu führen, dass mehr chirurgische Eingriffe ambulant durchgeführt werden, wie es in anderen Ländern schon länger üblich ist. Die gleiche Vergütung im ambulanten und stationären Sektor hatten Niedergelassene schon lange gefordert. Aber die Umsetzung bereitet ihnen doch Kopfzerbrechen.

Update Gynäkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert – ganz bequem per eMail.

Newsletter bestellen

Live-Webinar "Chronische Unterbauch- und Viszeralschmerzen in der Praxis managen"

Springer Medizin

Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress

Abstract

Neu im Fachgebiet Gynäkologie und Geburtshilfe

Nodal-negativ nach neoadjuvanter Chemo: Axilladissektion verzichtbar?

Rezidivierender Peritonsillarabszess nach Oralsex

Endlich: Zi zeigt, mit welchen PVS Praxen zufrieden sind

Ambulantisierung: Erste Erfahrungen mit dem Hybrid-DRG

Update Gynäkologie

Live-Webinar "Chronische Unterbauch- und Viszeralschmerzen in der Praxis managen"

Springer Medizin

Abstract

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 4/2018

Response to Costa, Lemos, and Paneque Letter to the Editor

Clinical Cardiovascular Genetic Counselors Take a Leading Role in Team-based Variant Classification

Challenges, Dilemmas and Factors Involved in PGD Decision-Making: Providers’ and Patients’ Views, Experiences and Decisions

Perceived Changes to Obstetric Care and the Integration of Personal and Professional Life as a Pregnant Prenatal Genetic Counselor

Examining the Psychosocial Impact of Genetic Testing for Cardiomyopathies

Identification as a Mutation Carrier and Effects on Life According to Experiences of Finnish Male BRCA1/2 Mutation Carriers

Neu im Fachgebiet Gynäkologie und Geburtshilfe

Nodal-negativ nach neoadjuvanter Chemo: Axilladissektion verzichtbar?

Rezidivierender Peritonsillarabszess nach Oralsex

Endlich: Zi zeigt, mit welchen PVS Praxen zufrieden sind

Ambulantisierung: Erste Erfahrungen mit dem Hybrid-DRG

Update Gynäkologie