Parents’ and adolescents’ perspectives and understanding of information about childhood cancer precision medicine

Abstract

BackgroundPrecision medicine is projected to become integral to childhood cancer care. As such, it is essential to support families to understand what precision medicine entails.MethodsA total of 182 parents and 23 adolescent patients participating in Precision Medicine for Children with Cancer (PRISM), an Australian precision medicine clinical trial for high‐risk childhood cancer, completed questionnaires after study enrollment (time 0 [T0]). Of the parents, 108 completed a questionnaire and 45 completed an interview following return of precision medicine results (time 1 [T1]). We analyzed the mixed‐methods data comprising measures exploring families’ perceptions and understanding of PRISM’s participant information sheet and consent form (PISCF), and factors associated with understanding.ResultsMost parents were satisfied with the PISCF, rating it as at least “somewhat” clearly presented (n = 160/175; 91%) and informative (n = 158/175; 90%). Many suggested improvements including the use of clearer language and a more visually engaging format. Parents’ actual understanding of precision medicine was low on average, but scores improved between T0 and T1 (55.8/100‐60.0/100; p = .012). Parents from culturally and/or linguistically diverse backgrounds (n = 42/177; 25%) had lower actual understanding scores than those from a Western/European background whose first language was English (p = .010). There was little correlation between parents’ perceived and actual understanding scores (p = .794; Pearson correlation –0.020; 95% CI, –0.169 to 0.116). Most adolescent patients read the PISCF either “briefly” or “not at all” (70%) and had a perceived understanding score of 63.6/100 on average.ConclusionsOur study revealed gaps in families’ understanding of childhood cancer precision medicine. We highlighted areas for potential intervention such as through targeted information resources.Plain Language Summary Precision medicine is projected to become part of the standard of care for children with cancer. Precision medicine aims to give the right treatment to the right patient and involves several complex techniques, many of which may be challenging to understand. Our study analyzed questionnaire and interview data from parents and adolescent patients enrolled in an Australian precision medicine trial. Findings revealed gaps in families’ understanding of childhood cancer precision medicine. Drawing on parents’ suggestions and the literature, we make brief recommendations about improving information provision to families, such as through targeted information resources.

Experiences of pediatric cancer patients (age 12–18 years) with extensive germline sequencing for cancer predisposition: a qualitative study

“…Furthermore, our study highlights several aspects that could improve the supportiveness of the environment. The participants highly preferred the infographic over the information letter that was used, which is consistent with previous research into preferences of children [ 38 , 39 ], but also with recent studies into parental experiences with precision medicine [ 40 , 41 ]. Another aspect is drawing adolescents’ attention to long-term consequences of extensive germline sequencing such as surveillance, preventative measures and insurability based on the potential test results.…”

Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer

“…Finally, ProCure was purpose-built to be iterated, meaning that as new end-user needs are identified they can be functionally added to the resource. Other studies have cited that clear communication between patients, families, and clinicians to manage patient and familial expectations of off-label treatments on a patient’s prognosis is often another challenge clinicians face ( 13 , 25 , 26 ). In future, we may consider a dedicated section of ProCure to provide training or information to clinicians on how best to approach these conversations.…”

The feasibility and acceptability of collecting psychosocial outcome measures embedded within a precision medicine trial for childhood cancer

“…Running alongside PRISM (recruitment completed: December 2023), ‘PRISM‐Impact’ is a prospective, longitudinal psychosocial study which aims to collect PROMs and parent‐proxy measures to better understand families' attitudes toward, and the impact of, PRISM. 15 , 16 PRISM‐Impact collects data from families 2–4 weeks post PRISM enrolment (T0), 2–8 weeks after the delivery of PRISM results and any treatment recommendation(s) to families (T1), and then annually up to 5 years post PRISM enrolment (T2–T4). PRISM‐Impact questionnaires, anticipated to take less than 30 min to complete each, included a mix of purpose‐designed and validated measures; (see Appendix S1 ).…”