ID #673 Bereaved Parents’ Reflections on PRISM Precision Medicine Trial Participation for Poor-Prognosis Paediatric CNS Cancer
Sara Soleymani, Kate Hetherington, Brittany McGill, David Ziegler, Marion Mateos, Claire WakefieldAbstract
Background
For poor-prognosis paediatric CNS cancers, precision medicine trials may offer families hope when standard options are limited. This study examined bereaved parents’ reflections on their child’s trial participation, including perceived benefits, burdens, and impacts on coping.
Methods
PRISM-Impact is a psychosocial study within the prospective Australian PRISM trial for poor-prognosis childhood cancers (survival <30%). We descriptively analysed post-bereavement questionnaire data completed ≥6 months after the child’s death by bereaved parents of children with CNS tumours diagnosed at < 18 years. Questions assessed perceived benefits, burdens, and impacts on coping using 5-point Likert options (“not at all true” to “extremely true”).
Results
Most (81%) had post-school education, 41% were employed full-time, and 79% reported a Western/European cultural background. Most indicated participation provided useful information for them and their doctor (86%) and supported cures for future patients (82%). Over half indicated participation provided peace of mind (59%). Most reported they were glad their doctor recommended PRISM (82%) and that participation gave them more hope (63.7%). Half of parents reported no perceived increase in their child’s chance of cure from participation. Key burdens included learning the cancer was less treatable or more aggressive (52%) and delays in receiving results (52%). Most did not report concerns about privacy (91%), insurance (86%), or employment impacts (91%), and few regretted their participation (23.9%). Most reported participation did not make coping with their child’s cancer harder (68.0%), while 24.0% reported it made coping easier. Of the 91 bereaved parents from 73 families in the CNS group, the questionnaire was sent to 28 families (38 parents), and 24 families (27 parents; 17 female and 10 male) returned the questionnaire.
Conclusions
In the early months following their child’s death from CNS cancer, bereaved parents generally reflected positively on their child’s precision medicine participation. While regret was uncommon, findings highlight the importance of timely and clear communication of individual tumour results to enhance parents’ experiences and reduce burden of participation.