The Influence of Adolescence on Parents’ Perspectives of Testing and Discussing Inherited Cancer Predisposition

Abstract

Li-Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition syndrome that may present with a first cancer before or during adolescence/young adulthood. Families offered LFS genetic testing for their children can inform our understanding of how the unique developmental context of adolescence influences parental perspectives about genetic testing and discussions of cancer risk. In this study, semi-structured interviews were conducted with 46 parents of children at risk for LFS to capture those perspectives. Analysis utilized summary descriptive statistics and inductive qualitative content coding. Most parents (33/46; 72%) expressed beliefs that adolescence influences the importance of LFS testing and/or discussions about genetic risk. Twenty-six parents related this influence to cognitive, physical, and social changes occurring during adolescence. Aspects of adolescence perceived as promoting LFS testing/discussion included developmental appropriateness, risks of cancer in adolescence, need for medical screening decisions, influence on behaviors, transition to adult health care, and reproductive risks. Aspects of adolescence perceived as complicating LFS testing/discussions included potential negative emotional impact, misunderstanding, added burden, and negative impact on self-image or future planning. Parents recognize the complex influence that adolescence has on LFS testing and conversations surrounding results. Further research is needed to understand the actual impact of genetic testing on young people, and how to best support parents and adolescents within the broader context of heritable diseases.

Families’ and health care professionals’ attitudes towards Li‐Fraumeni syndrome testing in children: A systematic review

“…However, some children ultimately felt parents should make the decision . A recent study of 46 parents of children at risk of LFS acknowledged adolescent should take more responsibility of their health care decisions and knowledge of their risk may moderate risky health behaviours . Conversely, parents worried that testing during adolescents, an already emotional difficult time, may heighten negative emotions associated with testing .…”

“…A recent study of 46 parents of children at risk of LFS acknowledged adolescent should take more responsibility of their health care decisions and knowledge of their risk may moderate risky health behaviours . Conversely, parents worried that testing during adolescents, an already emotional difficult time, may heighten negative emotions associated with testing . Despite parental concerns, the majority of adolescents tested did not report being negative affected by the testing process …”

Psychosocial interventions and needs among individuals and families with Li‐Fraumeni syndrome: A scoping review

“…Such benefits included: the reduction of uncertainty and satisfying the need to know, [46][47][48][49][50] understanding the cause for a cancer diagnosis, 47,51 the ability to understand the risk to oneself and to family members, [46][47][48][49][50] and having the option to pursue ongoing surveillance. 46,47,49,50,52 Several studies reported the concern for negative psychosocial impact as a major challenge or risk to the election of TP53 genetic testing. Additional reasons for declining testing included: perceived lack of benefit of screening 49,50 and added emotional or logistical burden.…”

“…Additional reasons for declining testing included: perceived lack of benefit of screening 49,50 and added emotional or logistical burden. 46,49,52,53 Both adolescents undergoing genetic testing and parents deciding to test their children expressed concern over privacy, insurance issues, and risk to employment. 46,48,50,51 To help clarify risks and benefits of undergoing testing, several studies suggested the use of developmentally appropriate decisionmaking aids during the genetic counseling process.…”

Genetic Susceptibility to Kidney Cancer

“…Studies about long-term effect of surveillance in healthy carriers in hereditary kidney cancer families are needed. Additionally, further research is needed to understand the actual impact of genetic testing on young family members [63].…”