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Wakefield, Claire E.; Hetherington, Kate; Robertson, Eden G.; Donoghoe, Mark W.; Hunter, Jacqueline D.; Vetsch, Janine; Marron, Jonathan M.; Tucker, Katherine M.; Marshall, Glenn M.; Broom, Alexander; Haber, Michelle; Tyrrell, Vanessa; Malkin, David; Lau, Loretta; Mateos, Marion K.; O’Brien, Tracey A.; Ziegler, David S.

Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives

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  • Medientyp: E-Artikel
  • Titel: Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives
  • Beteiligte: Wakefield, Claire E.; Hetherington, Kate; Robertson, Eden G.; Donoghoe, Mark W.; Hunter, Jacqueline D.; Vetsch, Janine; Marron, Jonathan M.; Tucker, Katherine M.; Marshall, Glenn M.; Broom, Alexander; Haber, Michelle; Tyrrell, Vanessa; Malkin, David; Lau, Loretta; Mateos, Marion K.; O’Brien, Tracey A.; Ziegler, David S.
  • Erschienen: Springer Science and Business Media LLC, 2023
  • Erschienen in: British Journal of Cancer
  • Sprache: Englisch
  • DOI: 10.1038/s41416-023-02429-1
  • ISSN: 0007-0920; 1532-1827
  • Schlagwörter: Cancer Research ; Oncology
  • Entstehung:
  • Anmerkungen:
  • Beschreibung: <jats:title>Abstract</jats:title><jats:sec> <jats:title>Background</jats:title> <jats:p>Paediatric precision oncology aims to match therapeutic agents to driver gene targets. We investigated whether parents and patients regret participation in precision medicine trials, particularly when their hopes are unfulfilled.</jats:p> </jats:sec><jats:sec> <jats:title>Methods</jats:title> <jats:p>Parents and adolescent patients completed questionnaires at trial enrolment (T0) and after receiving results (T1). Parents opted-in to an interview at T1. Bereaved parents completed a questionnaire 6-months post-bereavement (T1B). We analysed quantitative data with R and qualitative data thematically with NVivo, before integrating all data for interpretation.</jats:p> </jats:sec><jats:sec> <jats:title>Results</jats:title> <jats:p>182 parents and 23 patients completed T0; 108/182 parents and 8/23 patients completed T1; 27/98 bereaved parents completed T1B; and 45/108 parents were interviewed. At enrolment, participants held concurrent hopes that precision medicine would benefit future children and their child. Participants expressed concern regarding wait-times for receipt of results. Most participants found the trial beneficial and not burdensome, including bereaved parents. Participants reported high trial satisfaction (median scores: parents: 93/100; patients: 80/100). Participants expressed few regrets (parent median scores: parents: 10/100; bereaved parents: 15/100; patient regret: 2/8 expressed minimal regret).</jats:p> </jats:sec><jats:sec> <jats:title>Conclusions</jats:title> <jats:p>Even when trial outcomes did not match their hopes, parents and patients rarely regretted participating in a childhood cancer precision medicine trial. These data are critical for integrating participants’ views into future precision medicine delivery.</jats:p> </jats:sec>