ID #661 Psychological distress in parents of children with poor prognosis central nervous system (CNS) cancers participating in the PRISM precision medicine trial
Brittany McGill, Kate Hetherington, Maeve McGillycuddy, Rebecca Daly, David Ziegler, Marion Mateos, Glenn Marshall, Claire WakefieldAbstract
Background
Precision medicine trials are advancing best practice for young patients with poor prognosis central nervous system (CNS) cancers, however little research has characterised parent psychological distress in this setting.
Methods
We collected mixed-methods data from parents of children (<21 years) with poor prognosis CNS cancers via a psychosocial study (PRISM-Impact) embedded in the ZERO Childhood Cancer Program’s precision medicine trial (PRISM). We administered questionnaires at trial enrolment (Time 0, T0) and after return of results (Time 1, T1), with an optional qualitative interview at T1. We calculated the prevalence of clinically-relevant psychological concerns via the Emotion Thermometers Tool (ETT) and fear of disease progression via the short-form caregiver FoP Scale. We used a linear mixed model to examine relationships between psychological (e.g., intolerance of uncertainty) and trial (e.g., results received) factors, and parents’ psychological distress.
Results
Most parents reported clinically-relevant levels of psychological concerns (distress, anxiety, depression, anger and/or need for help) on the ETT at trial enrolment (88/113, 78%) and after return of their child’s results (40/56, 71%). Clinical levels of fear of disease progression were also evident across timepoints (in 65% and 79% of parents). Higher levels of intolerance of uncertainty at baseline were associated with higher parent distress at T1 (p<.05), while receiving a pathogenic/likely pathogenic germline finding appeared associated with lower psychological distress (p<.05). Interview data (N = 21) highlights how uncertainty and hope can drive families’ engagement with precision medicine.
Conclusions
Our findings highlight the psychological and clinical factors that may compound parents’ normative psychological responses to caring for a child with a likely life-limiting CNS cancer. Better understanding the causes of their child’s cancer may play some role in easing parents’ distress, even if cure is not possible. Strategies to support parents experiencing high levels of fear and difficulty managing uncertainty are needed.