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- Title
Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews.
- Authors
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.
- Abstract
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.
- Subjects
FAMILY history (Medicine); FAMILY assessment; FAMILY history (Sociology); HEREDITARY cancer syndromes; PRIMARY care
- Publication
Hereditary Cancer in Clinical Practice, 2022, Vol 20, Issue 1, p1
- ISSN
1731-2302
- Publication type
Article
- DOI
10.1186/s13053-022-00231-3