“Balancing Expectations with Actual Realities”: Conversations with Clinicians and Scientists in the First Year of a High-Risk Childhood Cancer Precision Medicine Trial

Abstract

Precision medicine is changing cancer care and placing new demands on oncology professionals. Precision medicine trials for high-risk childhood cancer exemplify these complexities. We assessed clinicians' (n = 39) and scientists' (n = 15) experiences in the first year of the PRecISion Medicine for Children with Cancer (PRISM) trial for children and adolescents with high-risk cancers, through an in-depth semi-structured interview. We thematically analysed participants' responses regarding their professional challenges, and measured oncologists' knowledge of genetics and confidence with somatic and germline molecular test results. Both groups described positive early experiences with PRISM but were cognisant of managing parents' expectations. Key challenges for clinicians included understanding and communicating genomic results, balancing biopsy risks, and drug access. Most oncologists rated 'good' knowledge of genetics, but a minority were 'very confident' in interpreting (25%), explaining (34.4%) and making treatment recommendations (18.8%) based on somatic genetic test results. Challenges for scientists included greater emotional impact of their work and balancing translational outputs with academic productivity. Continued tracking of these challenges across the course of the trial, while assessing the perspectives of a wider range of stakeholders, is critical to drive the ongoing development of a workforce equipped to manage the demands of paediatric precision medicine.

Pediatric Oncologists’ Experiences Returning and Incorporating Genomic Sequencing Results into Cancer Care

“…Together with previous research [ 7 , 9 , 10 , 13 , 14 , 15 , 43 , 44 , 45 , 46 ], our results further emphasize the importance of improving medical education around genetics to train physicians to interpret and communicate genomic information relevant to their practice. In our study, oncologists expressed not feeling practiced or trained at interpreting the genomic results without genetics support.…”

“…We have previously reported that prior to participating in ROR sessions, pediatric oncologists believed that returning ES results would be similar to returning results from other medical tests [ 4 ]. However, after participating in ROR, this study found that those same oncologists described feeling they lacked sufficient technical knowledge and training to communicate germline GS results as well as uncertain information in lay terms—similar to challenges identified by non-geneticist physicians in other studies [ 9 , 10 , 13 , 15 , 16 , 20 , 21 , 22 , 23 ]. As a result, oncologists felt that support from GCs and genetic specialists was essential to interpreting and effectively communicating genomic results to families.…”

“…As genomic testing is integrated into cancer care, interpretation and return of these results is becoming an essential skillset for pediatric oncologists [ 11 , 12 ]. Yet research shows that communication of genomic results can be challenging for non-geneticist physicians [ 13 ], especially when conveying information about diseases or conditions unrelated to their area of specialization [ 14 , 15 , 16 ]. For example, non-geneticist oncologists have reported not feeling confident in their ability to interpret germline information or to effectively communicate non-cancer GS results to families [ 14 , 15 ].…”

“…Yet research shows that communication of genomic results can be challenging for non-geneticist physicians [ 13 ], especially when conveying information about diseases or conditions unrelated to their area of specialization [ 14 , 15 , 16 ]. For example, non-geneticist oncologists have reported not feeling confident in their ability to interpret germline information or to effectively communicate non-cancer GS results to families [ 14 , 15 ]. Genetic counselors (GCs) can be a helpful resource when they are available to assist with results disclosure [ 14 ].…”

Understanding decisions to participate in genomic medicine in children's cancer care: A comparison of what influences parents, health care providers, and the general community

“…However, there are only a small number of studies investigating these preferences. [10][11][12][13][14][15] Broader research, examining parental decision-making about treatment options for their child with cancer indicates parents are influenced by numerous factors including the child's prognosis and quality of life (QoL), the impact of treatment on the family, as well as cost and funding considerations. 16,17 Several studies have highlighted how these factors influence HCPs and parents differently.…”