{"title":"Diagnostic Uncertainty and Continuity in Pediatric Oncology: A Caregiver's Perspective.","authors":"AlAnood Saud AlRoomi","doi":"10.1177/23743735261439549","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"13 ","pages":"23743735261439549"},"PeriodicalIF":1.8000,"publicationDate":"2026-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13051147/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Patient Experience","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/23743735261439549","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2026/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
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.
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