ArticleHereditary cancer in clinical practice2022
Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews.
Article in Hereditary cancer in clinical practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03426878 (Exome Sequencing in Diverse Populations in Colorado & Oregon), which is not on this map. Cited by 8 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Exome Sequencing in Diverse Populations in Colorado & Oregon
Who cites it
8 citing papers in PubMed, 9 citations in OpenAlex.
- Patient-initiated lifestyle changes following receipt of genetic test results in a predominantly marginalized population.Journal of genetic counseling · 2025Article
- A Mixed-Methods Approach to Assessing Barriers and Facilitators to Cancer Genetics Care in Black and Latino/a Individuals Impacted by Pancreatic Cancer: The Racial/ethnic Equity in GENetic Education, Risk Assessment, and TEsting (REGENERATE) Study.Digestive diseases and sciences · 2025Article
- Usability, Engagement, and Report Usefulness of Chatbot-Based Family Health History Data Collection: Mixed Methods Analysis.Journal of medical Internet research · 2024Article
- Evaluation of mailed results versus telephone disclosure of normal cancer genetic test results in a low-risk underserved population.Translational behavioral medicine · 2024Article
- Feasibility of an electronic patient-facing cancer family history tool in medically underserved populations.Genetics in medicine open · 2024Article
- Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study.Public health genomics · 2024Article
- Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project.Journal of community genetics · 2023Article
Corrections and comments
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Authors and funding
17 authors at 7 institutions in 1 country.
Funding
Abstract
backgroundRisk 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.
methodsInterview 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.
resultsInterviewees 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.
conclusionsEven 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 registrationThis 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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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.