What do cancer genetic providers want us to know about variant reclassification and recontact that we are not asking? A thematic analysis of open‐ended survey responses

Author:

Brown Kerri1,Ponton Marisel1,Davidson Elenita2,Arun Banu3ORCID,Volk Robert J.4ORCID,Shete Sanjay5ORCID,Peterson Susan K.2,Makhnoon Sukh16ORCID

Affiliation:

1. Peter O’Donnell Jr. School of Public Health University of Texas Southwestern Medical Center Dallas Texas USA

2. Department of Behavioral Science The University of Texas MD Anderson Cancer Center Houston Texas USA

3. Clinical Cancer Genetics University of Texas Southwestern Medical Center Dallas Texas USA

4. Department of Health Services Research The University of Texas MD Anderson Cancer Center Houston Texas USA

5. Department of Epidemiology The University of Texas MD Anderson Cancer Center Houston Texas USA

6. Harold C. Simmons Comprehensive Cancer Center University of Texas Southwestern Medical Center Dallas Texas USA

Abstract

AbstractBackgroundAccurate 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.MethodsThe authors used inductive thematic analysis to analyze open‐ended comments offered by oncologists and genetic counselors (GCs) from a large national survey.ResultsOf 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.ConclusionsThe 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.

Publisher

Wiley

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3