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Published in: Journal of Cancer Education 4/2018

01-08-2018

Development of an Educational Program Integrating Concepts of Genetic Risk and Preventive Strategies for Children with a Family History of Melanoma

Authors: Yelena P. Wu, Lisa G. Aspinwall, Elizabeth Nagelhout, Wendy Kohlmann, Kimberly A. Kaphingst, Sheila Homburger, Ryan D. Perkins, Douglas Grossman, Garrett Harding, Pamela Cassidy, Sancy A. Leachman

Published in: Journal of Cancer Education | Issue 4/2018

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Abstract

Efforts to prevent melanoma, especially for those at elevated risk for the disease, should ideally begin during childhood. However, there are few preventive interventions targeting children who are at higher risk for melanoma due to a family history of the disease. Further, there are no educational interventions that aim to help these at-risk children understand their risk for melanoma and the ways in which preventive behaviors, such as sun protection, can mitigate their risk. The current paper describes a multidisciplinary team’s process for creating a developmentally appropriate educational intervention about melanoma risk and prevention for children ages 8–17 years who have a family history of melanoma. Drawing from the fields of dermatology, health behavior change and education, genetic risk communication, science education, and graphic arts, the multimedia intervention created covers key learning points relevant to understanding melanoma, the role of DNA damage in melanoma development, inherited risk factors for melanoma, environmental factors causing DNA damage, and methods for preventing DNA damage, such as sun protective behaviors. Lessons learned during the development of the educational intervention, particularly relevant to multidisciplinary team interactions, are discussed. Implications for future testing and refinement of the novel educational content are also reviewed.
Literature
1.
go back to reference US Department of Health and and Human Services (2014) The surgeon general’s call to action to prevent skin cancer. Department of Health and Human Services, Washington, DC US Department of Health and and Human Services (2014) The surgeon general’s call to action to prevent skin cancer. Department of Health and Human Services, Washington, DC
3.
go back to reference Dennis LK, Vanbeek MJ, Beane Freeman LE, Smith BJ, Dawson DV, Coughlin JA (2008) Sunburns and risk of cutaneous melanoma: does age matter? A comprehensive meta-analysis. Ann Epidemiol 18(8):614–627CrossRefPubMedPubMedCentral Dennis LK, Vanbeek MJ, Beane Freeman LE, Smith BJ, Dawson DV, Coughlin JA (2008) Sunburns and risk of cutaneous melanoma: does age matter? A comprehensive meta-analysis. Ann Epidemiol 18(8):614–627CrossRefPubMedPubMedCentral
4.
go back to reference Oliveria SA, Saraiya M, Geller AC, Heneghan MK, Jorgensen C (2006) Sun exposure and risk of melanoma. Arch Dis Child 91(2):131–138CrossRefPubMed Oliveria SA, Saraiya M, Geller AC, Heneghan MK, Jorgensen C (2006) Sun exposure and risk of melanoma. Arch Dis Child 91(2):131–138CrossRefPubMed
5.
go back to reference Cho E, Rosner BA, Feskanich D, Colditz GA (2005) Risk factors and individual probabilities of melanoma for whites. J Clin Oncol 23(12):2669–2675CrossRefPubMed Cho E, Rosner BA, Feskanich D, Colditz GA (2005) Risk factors and individual probabilities of melanoma for whites. J Clin Oncol 23(12):2669–2675CrossRefPubMed
6.
go back to reference Gritz ER, Tripp MK, Peterson SK, Prokhorov AV, Shete SS, Urbauer DL et al (2013) Randomized controlled trial of a sun protection intervention for children of melanoma survivors. Cancer Epidemiol Biomark Prev 22(10):1813–1824CrossRef Gritz ER, Tripp MK, Peterson SK, Prokhorov AV, Shete SS, Urbauer DL et al (2013) Randomized controlled trial of a sun protection intervention for children of melanoma survivors. Cancer Epidemiol Biomark Prev 22(10):1813–1824CrossRef
7.
go back to reference Wu YP, Aspinwall LG, Michaelis TC, Stump T, Kohlmann WG, Leachman SA (2016) Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing. J Community Genet 7(1):21–31CrossRefPubMed Wu YP, Aspinwall LG, Michaelis TC, Stump T, Kohlmann WG, Leachman SA (2016) Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing. J Community Genet 7(1):21–31CrossRefPubMed
8.
go back to reference Geller AC, Brooks DR, Colditz GA, Koh HK, Frazier AL (2006) Sun protection practices among offspring of women with personal or family history of skin cancer. Pediatrics 117(4):e688–e694CrossRefPubMed Geller AC, Brooks DR, Colditz GA, Koh HK, Frazier AL (2006) Sun protection practices among offspring of women with personal or family history of skin cancer. Pediatrics 117(4):e688–e694CrossRefPubMed
9.
go back to reference Glenn BA, Bastani R, Chang LC, Khanna R, Chen K (2012) Sun protection practices among children with a family history of melanoma: a pilot study. J Cancer Educ 27(4):731–737CrossRefPubMed Glenn BA, Bastani R, Chang LC, Khanna R, Chen K (2012) Sun protection practices among children with a family history of melanoma: a pilot study. J Cancer Educ 27(4):731–737CrossRefPubMed
10.
go back to reference Glenn BA, Lin T, Chang LC, Okada A, Wong WK, Glanz K et al (2015) Sun protection practices and sun exposure among children with a parental history of melanoma. Cancer Epidemiol Biomark Prev 24(1):169–177CrossRef Glenn BA, Lin T, Chang LC, Okada A, Wong WK, Glanz K et al (2015) Sun protection practices and sun exposure among children with a parental history of melanoma. Cancer Epidemiol Biomark Prev 24(1):169–177CrossRef
11.
go back to reference Moyer VA (2012) Behavioral counseling to prevent skin cancer: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med 157(1):59–65CrossRefPubMed Moyer VA (2012) Behavioral counseling to prevent skin cancer: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med 157(1):59–65CrossRefPubMed
12.
go back to reference Rogers RW (1975) A protection motivation theory of fear appeals and attitude change. J Psychol 91(1):93–114CrossRefPubMed Rogers RW (1975) A protection motivation theory of fear appeals and attitude change. J Psychol 91(1):93–114CrossRefPubMed
13.
go back to reference Marteau TM, Weinman J (2006) Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Soc Sci Med 62(6):1360–1368CrossRefPubMed Marteau TM, Weinman J (2006) Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Soc Sci Med 62(6):1360–1368CrossRefPubMed
14.
go back to reference Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ (2009) Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med 11(4):265–278CrossRefPubMed Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ (2009) Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med 11(4):265–278CrossRefPubMed
15.
go back to reference Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA (2014) Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing. Genet Med 16(11):846–853CrossRefPubMedPubMedCentral Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA (2014) Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing. Genet Med 16(11):846–853CrossRefPubMedPubMedCentral
16.
go back to reference Cameron LD and Leventhal H, The self-regulation of health and illness behaviour (2003) Psychol Press Cameron LD and Leventhal H, The self-regulation of health and illness behaviour (2003) Psychol Press
18.
go back to reference United States Census Bureau, QuickFacts: Utah. 2014. United States Census Bureau, QuickFacts: Utah. 2014.
19.
go back to reference Wade CH, Wilfond BS, McBride CM (2010) Effects of genetic risk information on children’s psychosocial wellbeing: a systematic review of the literature. Genet Med 12(6):317–326CrossRefPubMed Wade CH, Wilfond BS, McBride CM (2010) Effects of genetic risk information on children’s psychosocial wellbeing: a systematic review of the literature. Genet Med 12(6):317–326CrossRefPubMed
20.
go back to reference Wakefield CE, Hanlon LV, Tucker KM, Patenaude AF, Signorelli C, McLoone JK, et al. (2016) The psychological impact of genetic information on children: a systematic review. Genet Med. Wakefield CE, Hanlon LV, Tucker KM, Patenaude AF, Signorelli C, McLoone JK, et al. (2016) The psychological impact of genetic information on children: a systematic review. Genet Med.
21.
go back to reference Edwards A, Gray J, Clarke A, Dundon J, Elwyn G, Gaff C et al (2008) Interventions to improve risk communication in clinical genetics: systematic review. Patient Educ Couns 71(1):4–25CrossRefPubMed Edwards A, Gray J, Clarke A, Dundon J, Elwyn G, Gaff C et al (2008) Interventions to improve risk communication in clinical genetics: systematic review. Patient Educ Couns 71(1):4–25CrossRefPubMed
22.
go back to reference Greening L, Stoppelbein L, Chandler CC, Elkin TD (2005) Predictors of children’s and adolescents’ risk perception. J Pediatr Psychol 30(5):425–435CrossRefPubMed Greening L, Stoppelbein L, Chandler CC, Elkin TD (2005) Predictors of children’s and adolescents’ risk perception. J Pediatr Psychol 30(5):425–435CrossRefPubMed
23.
go back to reference Venville G, Gribble SJ, Donovan J (2005) An exploration of young children’s understandings of genetics concepts from ontological and epistemological perspectives. Sci Educ 89(4):614–633CrossRef Venville G, Gribble SJ, Donovan J (2005) An exploration of young children’s understandings of genetics concepts from ontological and epistemological perspectives. Sci Educ 89(4):614–633CrossRef
24.
go back to reference Taber JM, Aspinwall LG, Kohlmann W, Dow R, Leachman SA (2010) Parental preferences for CDKN2A/p16 testing of minors. Genet Med 12(12):823–838CrossRefPubMed Taber JM, Aspinwall LG, Kohlmann W, Dow R, Leachman SA (2010) Parental preferences for CDKN2A/p16 testing of minors. Genet Med 12(12):823–838CrossRefPubMed
25.
go back to reference Wu YP, Aspinwall LG, Grahmann B, Mooney R, Zhao J, Kohlmann W, et al. (2016) Barriers to melanoma preventive behaviors in high-risk children, in Annual conference of the Utah Cancer Action Network: Salt Lake City Wu YP, Aspinwall LG, Grahmann B, Mooney R, Zhao J, Kohlmann W, et al. (2016) Barriers to melanoma preventive behaviors in high-risk children, in Annual conference of the Utah Cancer Action Network: Salt Lake City
26.
go back to reference Wu YP, Aspinwall LG, Grahmann B, Mooney R, Kohlmann W, Leachman S (2016) Why do children at elevated risk for melanoma not engage in preventive behaviors? In Annual conference of the Society of Behavioral Medicine. Annals of Behavioral Medicine, Washington, DC Wu YP, Aspinwall LG, Grahmann B, Mooney R, Kohlmann W, Leachman S (2016) Why do children at elevated risk for melanoma not engage in preventive behaviors? In Annual conference of the Society of Behavioral Medicine. Annals of Behavioral Medicine, Washington, DC
27.
go back to reference American Society of Clinical Oncology (2016) Familial malignant melanoma, in what are the screening options for familial melanoma? Am Soc Clin Oncol American Society of Clinical Oncology (2016) Familial malignant melanoma, in what are the screening options for familial melanoma? Am Soc Clin Oncol
28.
go back to reference Skin Cancer Foundation (2016) Melanoma causes and risk factors, in children: a special case. Skin Cancer Foundation Skin Cancer Foundation (2016) Melanoma causes and risk factors, in children: a special case. Skin Cancer Foundation
29.
go back to reference Nigg CR, Burbank PM, Padula C, Dufresne R, Rossi JS, Velicer WF et al (1999) Stages of change across ten health risk behaviors for older adults. The Gerontologist 39(4):473–482CrossRefPubMed Nigg CR, Burbank PM, Padula C, Dufresne R, Rossi JS, Velicer WF et al (1999) Stages of change across ten health risk behaviors for older adults. The Gerontologist 39(4):473–482CrossRefPubMed
30.
go back to reference Velicer WF, Fava JL, Prochaska JO, Abrams DB, Emmons KM, Pierce JP (1995) Distribution of smokers by stage in three representative samples. Prev Med 24(4):401–411CrossRefPubMed Velicer WF, Fava JL, Prochaska JO, Abrams DB, Emmons KM, Pierce JP (1995) Distribution of smokers by stage in three representative samples. Prev Med 24(4):401–411CrossRefPubMed
31.
go back to reference Riley BD, Culver JO, Skrzynia C, Senter LA, Peters JA, Costalas JW et al (2012) Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. J Genet Couns 21(2):151–161CrossRefPubMed Riley BD, Culver JO, Skrzynia C, Senter LA, Peters JA, Costalas JW et al (2012) Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. J Genet Couns 21(2):151–161CrossRefPubMed
32.
go back to reference Condit CM, Dubriwny T, Lynch J, Parrott R (2004) Lay people’s understanding of and preference against the word “mutation”. Am J Med Genet A 130a(3):245–250CrossRefPubMed Condit CM, Dubriwny T, Lynch J, Parrott R (2004) Lay people’s understanding of and preference against the word “mutation”. Am J Med Genet A 130a(3):245–250CrossRefPubMed
Metadata
Title
Development of an Educational Program Integrating Concepts of Genetic Risk and Preventive Strategies for Children with a Family History of Melanoma
Authors
Yelena P. Wu
Lisa G. Aspinwall
Elizabeth Nagelhout
Wendy Kohlmann
Kimberly A. Kaphingst
Sheila Homburger
Ryan D. Perkins
Douglas Grossman
Garrett Harding
Pamela Cassidy
Sancy A. Leachman
Publication date
01-08-2018
Publisher
Springer US
Published in
Journal of Cancer Education / Issue 4/2018
Print ISSN: 0885-8195
Electronic ISSN: 1543-0154
DOI
https://doi.org/10.1007/s13187-016-1144-9

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