Diagnostic Uncertainty and Continuity in Pediatric Oncology: A Caregiver's Perspective

When my nephew, a 12-year-old boy with T-cell lymphoblastic lymphoma, passed away, it exposed the tension between clinical optimism and the unpredictable course of oncologic disease. A series of clinical emergencies (overlooked appendicolith, life-threatening infections, thrombotic complications, and an isolated central nervous system relapse) contributed to a deteriorating clinical course. These progressive crises were devastating and highlighted key vulnerabilities in medical team communication around diagnostic uncertainty and in transitions of care among rotating oncologists. Beyond the personal tragedy, this experience also revealed institutional areas for improvement in clinical practice. Drawing on both lived experience and a systems perspective, this caregiver reflection highlights opportunities to strengthen communication, coordination, and trust in pediatric oncology, with implications for both patient outcomes and clinical practice.

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Publication Details

Journal
Journal of Patient Experience
Published
2026-04-01
DOI
https://doi.org/10.1177/23743735261439549
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
0.00
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article

Diagnostic Uncertainty and Continuity in Pediatric Oncology: A Caregiver's Perspective

AlAnood Saud AlRoomi
Journal of Patient Experience
Childhood Cancer Survivors' Quality of Life
article

Diagnostic Uncertainty and Continuity in Pediatric Oncology: A Caregiver's Perspective

AlAnood Saud AlRoomi
article en

Abstract

When my nephew, a 12-year-old boy with T-cell lymphoblastic lymphoma, passed away, it exposed the tension between clinical optimism and the unpredictable course of oncologic disease. A series of clinical emergencies (overlooked appendicolith, life-threatening infections, thrombotic complications, and an isolated central nervous system relapse) contributed to a deteriorating clinical course. These progressive crises were devastating and highlighted key vulnerabilities in medical team communication around diagnostic uncertainty and in transitions of care among rotating oncologists. Beyond the personal tragedy, this experience also revealed institutional areas for improvement in clinical practice. Drawing on both lived experience and a systems perspective, this caregiver reflection highlights opportunities to strengthen communication, coordination, and trust in pediatric oncology, with implications for both patient outcomes and clinical practice.

Journal of Patient ExperienceVol. 13
United Arab Emirates University (AE)
Openalex Percentile: Top 32%
Childhood Cancer Survivors' Quality of Life
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