Literature DB >> 31955387

Parent and child perspectives on family interactions related to melanoma risk and prevention after CDKN2A/p16 testing of minor children.

Yelena P Wu1,2, Lisa G Aspinwall3, Bridget Parsons4, Tammy K Stump5, Katy Nottingham4, Wendy Kohlmann4,6, Marjan Champine4,7, Pamela Cassidy8, Sancy A Leachman8,9.   

Abstract

Predispositional genetic testing of children for adult-onset health risks is typically only used when prevention and screening measures have utility during childhood. Little is known about how children and their parents may use predispositional risk information, including whether it changes their interactions around risk-reducing prevention and screening behaviors. The current study examined perspectives on family interactions around skin cancer prevention and control practices through 1 year after test reporting and counseling among children who received melanoma predispositional genetic testing and their parents. Eighteen children (50% carriers, 56% male, mean age = 12.4 years) and 11 parents from 11 families participated in semi-structured interviews 1 month and 1 year after receiving the child's test result. Both parents (73%) and children (50%) reported making changes to family skin cancer prevention and control practices after receiving the test result. Parent- and child-reported discussions about melanoma prevention increased over time (36% parents and 61% children at 1 month, 73% parents and 67% at 1 year). One-quarter (27%) of parents and no children reported having conflicts about sun protection or screening 1 year after test reporting. A majority of parents (63%) reported treating their child differently at the 1-year follow-up, especially among carriers. Predispositional genetic testing for melanoma was associated with reported changes to plans for and discussions about sun protection, and high levels of parent-child collaboration to implement child sun protection. Future work could seek to identify child and parent factors and interactions that predict improved prevention and screening behaviors following pediatric predispositional genetic testing.

Entities:  

Keywords:  CDKN2A/p16; Children; Melanoma; Predispositional genetic testing; Prevention

Year:  2020        PMID: 31955387      PMCID: PMC7295919          DOI: 10.1007/s12687-020-00453-9

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  19 in total

Review 1.  Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.

Authors:  Jeffrey R Botkin; John W Belmont; Jonathan S Berg; Benjamin E Berkman; Yvonne Bombard; Ingrid A Holm; Howard P Levy; Kelly E Ormond; Howard M Saal; Nancy B Spinner; Benjamin S Wilfond; Joseph D McInerney
Journal:  Am J Hum Genet       Date:  2015-07-02       Impact factor: 11.025

2.  Using a family systems approach to investigate cancer risk communication within melanoma families.

Authors:  Julie N Harris; Jennifer Hay; Alan Kuniyuki; Maryam M Asgari; Nancy Press; Deborah J Bowen
Journal:  Psychooncology       Date:  2010-10       Impact factor: 3.894

Review 3.  Ultraviolet radiation: a hazard to children and adolescents.

Authors:  Sophie J Balk
Journal:  Pediatrics       Date:  2011-02-28       Impact factor: 7.124

4.  A retrospective study of long-term psychosocial consequences and satisfaction after carrier testing in childhood in an autosomal recessive disease: aspartylglucosaminuria.

Authors:  O Järvinen; M Hietala; A M Aalto; M Arvio; A Uutela; P Aula; H Kääriäinen
Journal:  Clin Genet       Date:  2000-12       Impact factor: 4.438

5.  Geographical variation in the penetrance of CDKN2A mutations for melanoma.

Authors:  D Timothy Bishop; Florence Demenais; Alisa M Goldstein; Wilma Bergman; Julia Newton Bishop; Brigitte Bressac-de Paillerets; Agnès Chompret; Paola Ghiorzo; Nelleke Gruis; Johan Hansson; Mark Harland; Nicholas Hayward; Elizabeth A Holland; Graham J Mann; Michela Mantelli; Derek Nancarrow; Anton Platz; Margaret A Tucker
Journal:  J Natl Cancer Inst       Date:  2002-06-19       Impact factor: 13.506

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

Authors:  Tammy K Stump; Lisa G Aspinwall; Wendy Kohlmann; Marjan Champine; Jamie Hauglid; Yelena P Wu; Emily Scott; Pamela Cassidy; Sancy A Leachman
Journal:  J Genet Couns       Date:  2018-01-19       Impact factor: 2.537

7.  A pilot study of a telehealth family-focused melanoma preventive intervention for children with a family history of melanoma.

Authors:  Yelena P Wu; Kenneth Boucher; Nan Hu; Jennifer Hay; Wendy Kohlmann; Lisa G Aspinwall; Deborah J Bowen; Bridget G Parsons; Elizabeth S Nagelhout; Douglas Grossman; Kathi Mooney; Sancy A Leachman; Kenneth P Tercyak
Journal:  Psychooncology       Date:  2019-11-10       Impact factor: 3.894

Review 8.  The genetic basis of familial adenomatous polyposis and its implications for clinical practice and risk management.

Authors:  Maria Liz Leoz; Sabela Carballal; Leticia Moreira; Teresa Ocaña; Francesc Balaguer
Journal:  Appl Clin Genet       Date:  2015-04-16

9.  Phenocopies in melanoma-prone families with germ-line CDKN2A mutations.

Authors:  Hildur Helgadottir; Håkan Olsson; Margaret A Tucker; Xiaohong R Yang; Veronica Höiom; Alisa M Goldstein
Journal:  Genet Med       Date:  2017-12-07       Impact factor: 8.822

10.  Technical report: Ethical and policy issues in genetic testing and screening of children.

Authors:  Lainie Friedman Ross; Laine Friedman Ross; Howard M Saal; Karen L David; Rebecca R Anderson
Journal:  Genet Med       Date:  2013-02-21       Impact factor: 8.822

View more
  2 in total

1.  Persisting Effects of a Social Media Campaign to Prevent Indoor Tanning: A Randomized Trial.

Authors:  David B Buller; Sherry Pagoto; Kimberly L Henry; Katie Baker; Barbara J Walkosz; Joel Hillhouse; Julia Berteletti; Jessica Bibeau; Alishia Kinsey
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2022-04-01       Impact factor: 4.090

Review 2.  Genetic risk factors in melanoma etiopathogenesis and the role of genetic counseling: A concise review.

Authors:  Nikola Serman; Semir Vranic; Mislav Glibo; Ljiljana Serman; Zrinka Bukvic Mokos
Journal:  Bosn J Basic Med Sci       Date:  2022-09-16       Impact factor: 3.759

  2 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.