Adriana Areizaga Ayala, Harmony Farner, Shoshana Mehler, Caroline Christianson, Tara M. Brinkman, Justin N. Baker, Pamela S. Hinds, Jennifer W. Mack, Erica C. Kaye
{"title":"\"我们仍被留在后场，一无所知\"：儿科癌症患者和家长描述预后沟通的障碍","authors":"Adriana Areizaga Ayala, Harmony Farner, Shoshana Mehler, Caroline Christianson, Tara M. Brinkman, Justin N. Baker, Pamela S. Hinds, Jennifer W. Mack, Erica C. Kaye","doi":"10.1002/cam4.70810","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Purpose</h3>\n \n <p>Patient/parent perceptions of poor-quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis.</p>\n </section>\n \n <section>\n \n <h3> Patients and Methods</h3>\n \n <p>Semistructured interviews were conducted with a purposeful sample of pediatric cancer patients (<i>n</i> = 25) and parents (<i>n</i> = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio-recorded, transcribed, and de-identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>More than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor-quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person-centered connection.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Many patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor-quality prognostic communication. These findings will inform future collaborative research with patients, parents, and multidisciplinary clinicians to codesign an intervention that individualizes prognostication to align with patient/parent preferences for receiving information and fostering connection.</p>\n </section>\n </div>","PeriodicalId":139,"journal":{"name":"Cancer Medicine","volume":"14 7","pages":""},"PeriodicalIF":2.9000,"publicationDate":"2025-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/cam4.70810","citationCount":"0","resultStr":"{\"title\":\"“We Were Still Left in the Back Field, Not Knowing”: Pediatric Cancer Patients and Parents Describe Obstacles to Prognostic Communication\",\"authors\":\"Adriana Areizaga Ayala, Harmony Farner, Shoshana Mehler, Caroline Christianson, Tara M. Brinkman, Justin N. Baker, Pamela S. Hinds, Jennifer W. Mack, Erica C. Kaye\",\"doi\":\"10.1002/cam4.70810\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Purpose</h3>\\n \\n <p>Patient/parent perceptions of poor-quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Patients and Methods</h3>\\n \\n <p>Semistructured interviews were conducted with a purposeful sample of pediatric cancer patients (<i>n</i> = 25) and parents (<i>n</i> = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio-recorded, transcribed, and de-identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>More than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor-quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person-centered connection.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>Many patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor-quality prognostic communication. 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“We Were Still Left in the Back Field, Not Knowing”: Pediatric Cancer Patients and Parents Describe Obstacles to Prognostic Communication
Purpose
Patient/parent perceptions of poor-quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis.
Patients and Methods
Semistructured interviews were conducted with a purposeful sample of pediatric cancer patients (n = 25) and parents (n = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio-recorded, transcribed, and de-identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes.
Results
More than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor-quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person-centered connection.
Conclusion
Many patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor-quality prognostic communication. These findings will inform future collaborative research with patients, parents, and multidisciplinary clinicians to codesign an intervention that individualizes prognostication to align with patient/parent preferences for receiving information and fostering connection.
期刊介绍：
Cancer Medicine is a peer-reviewed, open access, interdisciplinary journal providing rapid publication of research from global biomedical researchers across the cancer sciences. The journal will consider submissions from all oncologic specialties, including, but not limited to, the following areas:
Clinical Cancer Research
Translational research ∙ clinical trials ∙ chemotherapy ∙ radiation therapy ∙ surgical therapy ∙ clinical observations ∙ clinical guidelines ∙ genetic consultation ∙ ethical considerations
Cancer Biology:
Molecular biology ∙ cellular biology ∙ molecular genetics ∙ genomics ∙ immunology ∙ epigenetics ∙ metabolic studies ∙ proteomics ∙ cytopathology ∙ carcinogenesis ∙ drug discovery and delivery.
Cancer Prevention:
Behavioral science ∙ psychosocial studies ∙ screening ∙ nutrition ∙ epidemiology and prevention ∙ community outreach.
Bioinformatics:
Gene expressions profiles ∙ gene regulation networks ∙ genome bioinformatics ∙ pathwayanalysis ∙ prognostic biomarkers.
Cancer Medicine publishes original research articles, systematic reviews, meta-analyses, and research methods papers, along with invited editorials and commentaries. Original research papers must report well-conducted research with conclusions supported by the data presented in the paper.
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