Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Abstract

BACKGROUND Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2‐stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18‐39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10‐19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876–2885. © 2016 American Cancer Society

Canadian genetic healthcare professionals’ attitudes towards discussing private pay options with patients

“…While willingness to pay was not the focus of our study, it is worth noting that patients in the United States and Australia have been shown to be willing to pay for genetic testing that is not covered by their insurance plans (Georgiou et al, ; Lin, Yeh, & Neumann, ; Marshall et al, ) and Canadians have been shown to be willing to pay for other healthcare services (Guimarães et al, ). However, if patients are not aware of this option, their willingness to pay becomes irrelevant.…”

Considerations in Methods and Timing for Delivery of Genetic Counseling Information to Pediatric Oncology Patients and Families

“…Four surveys were excluded for being filled out by young adult patients themselves or participants with an unknown relation to the patient. Questions were developed through discussion of prior literature and Institutional Review Board (IRB) suggestions regarding anonymity and passive collection to keep the survey simple 10,[25][26][27][28][29][30][31]35 (Supplemental Digital Content 1 for the survey, http://links.lww.com/JPHO/A490). This study was reviewed by the Johns Hopkins Medicine IRB and was deemed exempt.…”

“…[25][26][27][28][29][30][31] Parents also reported feeling that they had an inadequate level of genetics knowledge to understand CPS and that family counseling or educational material would be beneficial. 26,28,29 Therefore, genetic counseling may be a useful psychological and educational intervention for these families. Education of pediatric physicians and nurses to optimize familycentered and timely referrals in genetic medicine has the potential to improve patient care and outcomes.…”

“…This study also suggested that interest in receiving genetic counseling information was indirectly correlated with patient age and socioeconomic background, as well as greater interest in families of female patients. In most cases, parents were interested to understand what may have caused their child’s cancer 25–31. Parents also reported feeling that they had an inadequate level of genetics knowledge to understand CPS and that family counseling or educational material would be beneficial 26,28,29.…”

“…In most cases, parents were interested to understand what may have caused their child's cancer. [25][26][27][28][29][30][31] Parents also reported feeling that they had an inadequate level of genetics knowledge to understand CPS and that family counseling or educational material would be beneficial. 26,28,29 Therefore, genetic counseling may be a useful psychological and educational intervention for these families.…”