Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews

IF 2 4区医学 Q3 ONCOLOGY

Hereditary Cancer in Clinical Practice Pub Date : 2022-06-10 DOI:10.1186/s13053-022-00231-3

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.

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引用次数: 1

Abstract

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. 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. 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. 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. This study is a sub-study of the Cancer Health Assessments Reaching Many (CHARM) trial, ClinicalTrials.gov, NCT03426878. Registered 8 February 2018.

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识字适应，电子家族史评估遗传转诊在初级保健:从定性访谈患者用户的见解

在初级保健中建议对遗传性癌症综合征进行风险评估，但很少收集足够详细的家族史来促进风险评估和转诊——这是一个障碍，对有医疗保健获取障碍的个人产生不成比例的影响。我们试图对一种适合读写能力的、面向患者的电子家族史工具进行定性评估，该工具开发用于癌症健康评估(CHARM)研究中招募的不同、服务不足的患者群体。访谈参与者是从CHARM参与者的亚群中招募的，这些参与者在工具使用方面经历了障碍，如花费更长的时间来完成工具，有不完整的尝试，和/或与遗传咨询师收集的标准相比，提供不准确的家族史。我们对参与者进行了半结构化访谈，了解工具使用的障碍和促进因素以及整体工具可接受性;采访被记录下来，并由专业人员转录。基于使用归纳技术开发的代码本对转录本进行编码，并对编码摘录进行审查，以确定与家族史自我评估和研究工具的可接受性相关的障碍和促进因素相关的总体主题。受访者认为该工具易于操作和理解。然而，他们描述了与家族史信息、识字和语言以及某些工具功能有关的障碍。与会者对每个障碍都提出了具体的、易于实施的解决方案。尽管使用该工具存在经验障碍，但大多数参与者表示，与临床收集的家族史相比，电子家族史自我评估是可接受的或更可取的。即使对于那些在工具使用方面有障碍的参与者，家族史自我评估也被认为是一种可接受的替代方法，而不是临床医生收集的家族史。所经历的障碍可以通过对目前的家族史工具进行微小的调整来克服。本研究是Cancer Health Assessments reach Many (CHARM)试验的一个子研究，ClinicalTrials.gov, NCT03426878。2018年2月8日注册

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来源期刊

Hereditary Cancer in Clinical Practice 医学-肿瘤学

CiteScore

3.10

自引率

5.90%

发文量

审稿时长

>12 weeks

期刊介绍： Hereditary Cancer in Clinical Practice is an open access journal that publishes articles of interest for the cancer genetics community and serves as a discussion forum for the development appropriate healthcare strategies. Cancer genetics encompasses a wide variety of disciplines and knowledge in the field is rapidly growing, especially as the amount of information linking genetic differences to inherited cancer predispositions continues expanding. With the increased knowledge of genetic variability and how this relates to cancer risk there is a growing demand not only to disseminate this information into clinical practice but also to enable competent debate concerning how such information is managed and what it implies for patient care. Topics covered by the journal include but are not limited to: Original research articles on any aspect of inherited predispositions to cancer. Reviews of inherited cancer predispositions. Application of molecular and cytogenetic analysis to clinical decision making. Clinical aspects of the management of hereditary cancers. Genetic counselling issues associated with cancer genetics. The role of registries in improving health care of patients with an inherited predisposition to cancer.