Peter O'Donnell Jr. School of Public Health, University of Texas Southwestern Medical Center, Dallas, Texas, USA.
Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
Cancer. 2024 Nov 15;130(22):3926-3934. doi: 10.1002/cncr.35429. Epub 2024 Jun 6.
Accurate variant classification and relaying reclassified results to patients is critical for hereditary cancer care delivery. Over a 5- to 10-year period, 6%-15% of variants undergo reclassification. As the frequency of reclassifications increases, the issue of whether, how, when, and which providers should recontact patients becomes important but remains contentious.
The authors used inductive thematic analysis to analyze open-ended comments offered by oncologists and genetic counselors (GCs) from a large national survey.
Of the 634 oncologists and cancer GCs, 126 (20%) offered substantive free-text comments. Four thematic areas emerged: 1) ambiguity over professional responsibility to recontact, 2) logistical challenges with recontact, 3) importance of inter-institutional communication, and 4) suggested solutions. Some oncologists felt that laboratories, not them, are responsible for recontact; others believed that ordering providers/GCs were responsible; GCs readily acknowledged their own responsibility in recontact but added important caveats. Besides the lack of up-to-date patient contact information, providers raised unique challenges with recontact: financial instability of laboratories, lack of clinical resources, contacting family members, and accumulating burden of reclassifications. There were numerous calls for developing practice guidelines on prioritizing variants for recontact and discussion on whether duty for recontact may be fulfilled via unidirectional, low touch modalities. Potential solutions to recontact including national databases and patient facing databases were discussed.
The authors confirm previous themes of stakeholder opinions and add previously unreported contextual details to qualify those themes. Clarifying provider responsibilities through professional guidelines for reclassification and recontact addressing the subthemes identified here will better serve all constituencies.
准确的变异分类和将重新分类的结果转达给患者对于遗传性癌症护理的提供至关重要。在 5 到 10 年内，有 6%到 15%的变异会被重新分类。随着重新分类的频率增加，是否、如何、何时以及哪些提供者应该重新联系患者的问题变得重要，但仍存在争议。
作者使用归纳主题分析方法，分析了来自一项大型全国性调查的肿瘤学家和遗传咨询师（GC）的开放式评论。
在 634 名肿瘤学家和癌症 GC 中，有 126 名（20%）提供了实质性的自由文本评论。出现了四个主题领域：1）重新联系的专业责任不明确，2）重新联系的后勤挑战，3）机构间沟通的重要性，以及 4）提出的解决方案。一些肿瘤学家认为，重新联系的责任在于实验室，而不是他们；另一些人则认为，负责的是订购提供者/GC；GC 欣然承认自己在重新联系方面的责任，但增加了重要的警告。除了缺乏最新的患者联系信息外，提供者还提出了重新联系的独特挑战：实验室的财务不稳定、缺乏临床资源、联系家庭成员以及重新分类的负担不断增加。人们多次呼吁制定关于重新联系的优先变异的实践指南，并讨论重新联系的责任是否可以通过单向、低接触的方式来履行。重新联系的潜在解决方案，包括国家数据库和面向患者的数据库，都进行了讨论。
作者证实了利益相关者意见的先前主题，并添加了以前未报告的背景细节来限定这些主题。通过重新分类和重新联系的专业指南来明确提供者的责任，解决这里确定的子主题，将更好地为所有利益相关者服务。
