Perspectives and Experiences of Parents and Adolescents Who Participate in a Pediatric Precision Oncology Program: "When You Feel Helpless, This Kind of Thing Is Very Helpful"

Abstract

PURPOSE The SickKids Cancer Sequencing (KiCS) Program, launched in 2016, evaluates the clinical utility of paired tumor/germline Next-Generation Sequencing (NGS) in pediatric oncology patients with hard-to-cure and rare cancers. In anticipation of further widespread adoption of NGS, we aimed to characterize the experiences and perspectives of adolescents and parents of patients who have already undergone NGS evaluation, focusing on the psychosocial impact and personal utility. METHODS Parents of patients with pediatric cancer and adolescent patients who have participated in KiCS were invited to participate in semistructured interviews. Transcripts were analyzed using an inductive content analytic approach. RESULTS Of 45 individuals invited, 22 parents and 10 adolescents were interviewed (71% response rate). Prominent psychosocial themes were low distress, relief, and sense of control; some expressed fear of the unknown. In exploring constructs of personal utility, parents highlighted hope for treatment options despite low expectations for results with clinical impact, whereas adolescents articulated altruistic motivations and less hope for personal clinical benefit. Bringing closure and answering the question of why the cancer occurred was a salient theme among both groups. Both parents and adolescents find benefit and clear decisional satisfaction with participation. No participants expressed regret. CONCLUSION This study suggests that parents and adolescents benefit from NGS evaluation beyond the return of clinically relevant results. Our findings lay the framework for future work evaluating the value of NGS in pediatric precision oncology care through assessment of patient-reported outcomes and experiences. These results also guide provision of pre- and post-test education and support, which will facilitate patient-centered delivery of NGS practices.

Parents’ and adolescents’ perspectives and understanding of information about childhood cancer precision medicine

“…It is possible that younger adolescents may have received simpler verbal explanations of the trial’s complexity or moderated their intake of diagnosis‐ and treatment‐related information 11 . The current study did not explore patients’ actual understanding of precision medicine; however, a recent Canadian study found that adolescents had more realistic expectations of receiving actionable results from precision medicine testing than their parents 48 …”

“…11 The current study did not explore patients' actual understanding of precision medicine; however, a recent Canadian study found that adolescents had more realistic expectations of receiving actionable results from precision medicine testing than their parents. 48…”

The psychological impact of genetic testing in childhood cancer: A systematic review

“…25,26,28 In general -regardless of the outcome of the genetic testingclinically increased psychological distress after genetic testing in children was rare. 23,24,26,28,29,31,33,[36][37][38][39][40] Most studies focused on anxiety, depression and/or worry. When these emotions were reported, adolescents 2 generally described them as 'mild'.…”

“…In the event of a favorable result, receiving good news was experienced as a form of closure as they learnt that they were not more at risk than other children. 37,39 Interestingly, children also mentioned feeling relieved as a consequence of witnessing relief in their parents. 33 In the event of an unfavorable result, some children reported feeling relieved of uncertainty and hopeful about having better health outcomes than older generations in their family, now that they were aware of their predisposition.…”

Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer

“…Emerging data suggest that difficulties accessing therapeutic agents are challenging for both parents [ 27 ] and clinicians [ 29 , 32 ] and can contribute to the decision not to implement a targeted therapy [ 33 ]. Alongside these challenges is the possibility that engaging in the precision medicine process, even if ultimately unsuccessful, may benefit patient QoL by giving a patient and their family hope and reassurance that they have explored all potential treatment possibilities [ 29 , 34 , 35 ]. Identifying aspects of the precision medicine process which impact patient QoL will inform tailored psychosocial support for patients and families.…”