Patient/parent perspectives on genomic tumor profiling of pediatric solid tumors: The Individualized Cancer Therapy (iCat) experience

Abstract

Background Genomic tumor profiling (GTP) plays an important role in the care of many adult cancer patients. Its role in pediatric oncology is still evolving, with only a subset of patients currently expected to receive clinically significant results. Little is known about perspectives of pediatric oncology patients/parents on GTP. Procedure We surveyed individuals who previously underwent GTP through the iCat (Individualized Cancer Therapy) pilot study of molecular profiling in children with relapsed, refractory, and high-risk solid tumors at four pediatric cancer centers. Following return of profiling results, a cross-sectional survey was offered to the patient, if ≥18y at enrollment, or parent, if <18y. Forty-five surveys (85% response) were completed. Results Eighty-nine percent (39/44) of respondents reported hoping participation would help find cures for future patients, while 59% (26/44) hoped it would increase their/their child’s chance of cure. Most had few concerns about GTP, but 12% (5/43) worried they would learn their/their child’s cancer was less treatable or more aggressive than previously thought. Sixty-four percent (29/45) reported feeling their participation had helped others, and 44% (20/45) felt they had helped themselves/their own child, despite only one sub-study subject receiving targeted therapy matched to GTP findings. Fifty-four percent (21/39) wished to receive all available profiling data, including findings unrelated to cancer and of unclear significance. Conclusions Participants in pediatric GTP research perceive benefits of GTP to themselves and others, but expectations of personal benefits of GTP may exceed actual positive impact. These issues warrant consideration during consent discussions about GTP research participation.

Cancer patients' expectations when undergoing extensive molecular diagnostics—A qualitative study

“…This study illuminates cancer patients' narratives regarding their expectations and experience undergoing MD of their tumor before receiving the results, revealing expectations compatible with prior studies' findings. Thus, patient expectations seem to remain rather stable throughout the MD process.…”

Precision medicine in pediatric oncology

“…The technical success rate was high even when specimens collected for clinical purposes were used for sequencing. In addition, practices for returning results to treating providers and patient families (often including germline testing) were established and patient and provider perceptions of tumor profiling and germline sequencing are beginning to be assessed [ 24 ]. The diverse sequencing platforms used in each study resulted in similar rates (30–60%) of potentially actionable variants.…”

Next‐generation sequencing in precision oncology: Patient understanding and expectations

“…For example, studies have examined decisions whether or not to participate in cancer genome sequencing studies 9 and perceived benefits of genomic tumor profiling. 10 However, most studies in this area have been cross-sectional in nature and/or with relatively small sample sizes. Furthermore, it is unclear whether and to what extent patients lack awareness of-or hold misconceptions about-the use of genome sequencing to tailor treatment recommendations.…”