Parent and patient knowledge and attitudes about cancer predisposition syndrome genetic testing in pediatric oncology: Understanding sociodemographic and parent–child differences

Abstract

Abstract Background Cancer predisposition syndromes (CPS) impact about 10% of patients with pediatric cancer. Genetic testing (CPS‐GT) has multiple benefits, but few studies have described parent and child knowledge and attitudes regarding CPS‐GT decision‐making. This study examined parent and patient CPS‐GT decision‐making knowledge and attitudes. Procedure English‐ or Spanish‐speaking parents of children with pediatric cancer and patients with pediatric cancer ages 15–18 within 12 months of diagnosis or relapse were eligible to participate. Seventy‐five parents and 19 parent‐patient dyads (N = 94 parents, 77.7% female, 43.6% Latino/a/Hispanic; 19 patients, 31.6% female) completed surveys measuring CPS‐GT‐related beliefs. Independent samples t‐tests compared parent responses across sociodemographic characteristics and parent‐patient responses within dyads. Results Spanish‐speaking parents were significantly more likely than English‐speaking parents to believe that CPS‐GT not being helpful (p < .001) and possibly causing personal distress (p = .002) were important considerations for deciding whether to obtain CPS‐GT. Parents with less than four‐year university education, income less than $75,000, or Medicaid (vs. private insurance) were significantly more likely to endorse that CPS‐GT not being helpful was an important consideration for deciding whether to obtain CPS‐GT (p < .001). Parents felt more strongly than patients that they understood what CPS‐GT was (p = .01) and that parents should decide whether patients under 18 should receive CPS‐GT (p = .002). Conclusions Spanish‐speaking parents and parents with lower socioeconomic statuses were more strongly influenced by the potential disadvantages of CPS‐GT in CPS‐GT decision‐making. Parents felt more strongly than patients that parents should make CPS‐GT decisions. Future studies should investigate mechanisms behind these differences and how to best support CPS‐GT knowledge and decision‐making.

Keywords

• genetic counseling
• genetic testing
• hereditary neoplastic syndromes
• pediatric cancer
• pediatric oncology
• psychosocial studies