Impact of Precision Oncology Research in Pediatric Poor Prognosis Cancer - Patient, Parent and Healthcare Provider Perspectives

Sep 22, 2026

Comprehensive genomic analyses are increasingly available for children, adolescents, and young adults with poor prognosis cancers, yet the pediatric precision oncology evidence base describing challenges and successes from the AYA patient, parent, and healthcare provider perspectives remains limited. Interviews conducted between March 2021 and May 2023 explored experiences in British Columbia. Qualitative thematic analysis identified communication needs, disclosure and clinical integration of results, access barriers to innovative therapy, hope management, and participation-related stressors. Findings inform practical implementation considerations for precision oncology in clinical care.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages13

Reading Time33 min

AccessFree to download

Abstract

Background

Methods

Results

Conclusions

Introduction

Precision oncology context and implementation challenges

McCloskey et al. BMC Cancer (2026) 26:1058 BMC Cancer [https://doi.org/10.1186/s12885-026-16299-2](https://doi.org/10.1186/s12885-026-16299-2) RESEARCH Open Access Impact of precision oncology research in pediatric poor prognosis cancer: patient, parent and healthcare provider perspectives N. McCloskey 1, P. Mahon2, S. R. Rassekh2,3, K. Hetherington4,5, D. A. Regier6, C. E. Wakefield4,5, S. Pollard3,7† and R. J. Deyell2,3*† Abstract Background Comprehensive genomic analyses are increasingly accessible to children, adolescents and young adults (AYAs) with poor prognosis cancers. Challenges and successes of pediatric precision oncology studies from the perspectives of AYA patients, parents and healthcare providers (HCPs) are poorly described. Methods Between March 2021 and May 2023, we interviewed AYA patients (12–21 years), parents and HCPs who participated in pediatric precision oncology studies for poor prognosis cancers in British Columbia. Interviews followed an investigator-developed semi-structured topic guide. Data were coded inductively and deductively by one qualitative researcher and one trainee, supported by two additional team members. Analytic themes were established using qualitative thematic analysis. Results We interviewed 9 AYAs, 10 parents, and 17 HCPs. We identified five analytic themes: importance of clear communication of study information between patients, families and multidisciplinary HCPs; a need to support disclosure, understanding and clinical integration of research results; barriers to accessing innovative therapy and mitigation strategies; approaches to managing parent, patient and HCP hopes and expectations; personal challengesand stressors related to participation. Conclusions We highlight unmet needs and offer practical considerations for integrating precision oncology into clinical practice. Considerations include educating and supporting oncologists through genomics results disclosure, increasing engagement with multidisciplinary HCPs, streamlining access to study information and results, coordinating efforts to clinically validate results and access therapies, and establishing real-world outcome data to inform clinical decision-making. Implementation of these strategies will optimize care for patients and families who are navigating poor prognosis cancers. Keywords Pediatric Precision Oncology, Psychosocial Impact, Adolescents, Young Adults Parent Perspectives †S. Pollard and R. J. Deyell contributed equally to this work. *Correspondence: R. J. Deyell [rdeyell@cw.bc.ca](rdeyell@cw.bc.ca) 1Department of Pediatrics, University of British Columbia, Vancouver, Canada 2Division of Pediatric Hematology/Oncology/BMT, BC Children’s Hospital, Vancouver, Canada 3British Columbia Children’s Hospital Research Institute, Vancouver, BC, Canada 4School of Clinical Medicine, Faculty of Medicine, UNSW Sydney, Randwick, NSW, Australia 5Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia 6Population Health Sciences, British Columbia Cancer Research Institute, Vancouver, Canada 7Faculty of Health Sciences, Simon Fraser University, Burnaby, Canada © The Author(s) 2026. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons l

FAQs

What is the focus of this study on pediatric poor prognosis cancer?

The study examines challenges and successes of pediatric precision oncology, specifically capturing experiences from AYA patients, parents, and healthcare providers.

How were participants and interviews conducted?

Between March 2021 and May 2023, researchers interviewed AYA patients (12–21 years), parents, and healthcare providers who participated in precision oncology studies in British Columbia using a semi-structured topic guide.

What key themes were identified from the interviews?

The analysis identified themes including the importance of clear communication, the need to support disclosure and clinical integration of research results, barriers to accessing innovative therapy, approaches to managing hope and expectations, and personal challenges and stressors related to participation.

Sep 22, 2026

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