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<p>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; <a href="https://clinicaltrials.gov/study/NCT03336931">https://clinicaltrials.gov/study/NCT03336931</a>; registration date 08/11/2017). Parents and patients (12–17 years) completed questionnaires at enrolment (T0; <i>n</i> = 303 and <i>n</i> = 31) and following results and any treatment recommendations (T1; <i>n</i> = 144 and <i>n</i> = 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 (<i>p</i> &gt; 0.05). Our findings underscore precision medicine’s value for families in the setting of a poor-prognosis child with cancer.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月3日

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  • Kate Hetherington,
  • Jacqueline D. Hunter,
  • Mark W. Donoghoe,
  • Maeve McGillycuddy,
  • Brittany C. McGill,
  • Eden G. Robertson,
  • Vanessa Tyrrell,
  • Loretta M. S. Lau,
  • Jonathon M. Marron,
  • Katherine M. Tucker,
  • Glenn M. Marshall,
  • Janine Vetsch,
  • Michelle Haber,
  • David Malkin,
  • Marion K. Mateos,
  • Tracey A. O’Brien,
  • David S. Ziegler,
  • Claire E. Wakefield

摘要

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.