适用于初级保健中遗传学转诊的、经过文化水平调整的电子家族史评估：来自定性访谈的患者用户见解
Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews.
作者信息
Mittendorf Kathleen F, Lewis Hannah S, Duenas Devan M, Eubanks Donna J, Gilmore Marian J, Goddard Katrina A B, Joseph Galen, Kauffman Tia L, Kraft Stephanie A, Lindberg Nangel M, Reyes Ana A, Shuster Elizabeth, Syngal Sapna, Ukaegbu Chinedu, Zepp Jamilyn M, Wilfond Benjamin S, Porter Kathryn M
机构信息
Vanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center, 2525 West End Avenue, Nashville, TN, 37203, USA.
Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 9th Ave, Seattle, WA, 98101, USA.
出版信息
Hered Cancer Clin Pract. 2022 Jun 10;20(1):22. doi: 10.1186/s13053-022-00231-3.
BACKGROUND
Risk assessment for hereditary cancer syndromes is recommended in primary care, but family history is rarely collected in enough detail to facilitate risk assessment and referral - a roadblock that disproportionately impacts individuals with healthcare access barriers. We sought to qualitatively assess a literacy-adapted, electronic patient-facing family history tool developed for use in diverse, underserved patient populations recruited in the Cancer Health Assessments Reaching Many (CHARM) Study.
METHODS
Interview participants were recruited from a subpopulation of CHARM participants who experienced barriers to tool use in terms of spending a longer time to complete the tool, having incomplete attempts, and/or providing inaccurate family history in comparison to a genetic counselor-collected standard. We conducted semi-structured interviews with participants about barriers and facilitators to tool use and overall tool acceptability; interviews were recorded and professionally transcribed. Transcripts were coded based on a codebook developed using inductive techniques, and coded excerpts were reviewed to identify overarching themes related to barriers and facilitators to family history self-assessment and acceptability of the study tool.
RESULTS
Interviewees endorsed the tool as easy to navigate and understand. However, they described barriers related to family history information, literacy and language, and certain tool functions. Participants offered concrete, easy-to-implement solutions to each barrier. Despite experience barriers to use of the tool, most participants indicated that electronic family history self-assessment was acceptable or preferable in comparison to clinician-collected family history.
CONCLUSIONS
Even for participants who experienced barriers to tool use, family history self-assessment was considered an acceptable alternative to clinician-collected family history. Barriers experienced could be overcome with minor adaptations to the current family history tool.
TRIAL REGISTRATION
This study is a sub-study of the Cancer Health Assessments Reaching Many (CHARM) trial, ClinicalTrials.gov, NCT03426878. Registered 8 February 2018.
背景
在初级保健中建议对遗传性癌症综合征进行风险评估，但很少收集到足够详细的家族史以促进风险评估和转诊——这一障碍对有医疗保健获取障碍的个体影响尤甚。我们试图对一种为癌症健康评估惠及众多人群（CHARM）研究中招募的不同的、服务不足的患者群体开发的、适合读写能力的面向患者的电子家族史工具进行定性评估。
方法
访谈参与者从CHARM参与者的一个亚组中招募，与遗传咨询师收集的标准相比，该亚组在使用工具方面存在障碍，即完成工具花费时间更长、尝试不完整和/或提供不准确的家族史。我们对参与者进行了半结构化访谈，询问工具使用的障碍和促进因素以及工具的总体可接受性；访谈进行了录音并由专业人员转录。根据使用归纳技术开发的编码手册对转录本进行编码，并对编码的摘录进行审查，以确定与家族史自我评估的障碍和促进因素以及研究工具的可接受性相关的总体主题。
结果
受访者认可该工具易于操作和理解。然而，他们描述了与家族史信息、读写能力和语言以及某些工具功能相关的障碍。参与者针对每个障碍提供了具体的、易于实施的解决方案。尽管在使用工具方面有经验障碍，但大多数参与者表示，与临床医生收集的家族史相比，电子家族史自我评估是可以接受的或更可取的。
结论
即使对于有工具使用障碍的参与者，家族史自我评估也被认为是临床医生收集家族史的可接受替代方法。对当前家族史工具进行微小调整即可克服所遇到的障碍。
试验注册
本研究是癌症健康评估惠及众多人群（CHARM）试验的一项子研究，ClinicalTrials.gov，NCT03426878。2018年2月8日注册。
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