Family experiences of receiving treatment recommendations in a precision medicine trial for poor-prognosis childhood cancer.

Precision medicine trials may generate new treatment options for children with poor-prognosis cancer. We examined families' experiences of receiving treatment recommendations in the Australian PRISM trial (Australian and New Zealand Clinical Trials Registry: NCT03336931; https://clinicaltrials.gov/study/NCT03336931; registration date 08/11/2017). Parents and patients (12-17 years) completed questionnaires at enrolment (T0; n = 303 and n = 31) and following results and any treatment recommendations (T1; n = 144 and n = 8). Fifty-eight parents completed an interview (T1). At T0, most parents and patients expected to benefit from participation (87%) and receive a treatment recommendation (68%). Of the 70% of parents who received a treatment recommendation, half recalled this information. Parents felt that treatment recommendations offered hope and options; their absence brought disappointment, but also reassurance that all options were explored. Parents reported high involvement (93/100) and satisfaction (95/100) in treatment decisions. Receiving a treatment recommendation was not associated with regret about trial participation (p > 0.05). Our findings underscore precision medicine's value for families in the setting of a poor-prognosis child with cancer.