دورية أكاديمية
أعرض في EDS

Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems.

التفاصيل البيبلوغرافية
العنوان: Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems.
المؤلفون: Romagnoli KM; Department of Health System Sciences, Geisinger Health System, Danville, Pennsylvania, USA., Kulchak Rahm A; Department of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA., Jonas MC; Mid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA., Schwiter R; Department of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA., Klinger T; Department of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA, tlklinger1@geisinger.edu., Ladd I; Department of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA., Salvati Z; Department of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA., DiNucci A; Mid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA., Blasi PR; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA., Sheridan L; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA., Scrol A; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA., Henrikson NB; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA.
المصدر: Public health genomics [Public Health Genomics] 2023; Vol. 26 (1), pp. 45-57. Date of Electronic Publication: 2023 Mar 03.
نوع المنشور: Journal Article; Research Support, N.I.H., Extramural
اللغة: English
بيانات الدورية: Publisher: S. Karger Country of Publication: Switzerland NLM ID: 101474167 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1662-8063 (Electronic) Linking ISSN: 16624246 NLM ISO Abbreviation: Public Health Genomics Subsets: MEDLINE
أسماء مطبوعة: Original Publication: Basel : S. Karger
مواضيع طبية MeSH: Ovarian Neoplasms*/diagnosis , Ovarian Neoplasms*/genetics , Delivery of Health Care, Integrated*, Female ; Humans ; Genetic Testing ; Communication
مستخلص: Introduction: A traceback genetic testing program for ovarian cancer has the potential to identify individuals with hereditary breast and ovarian cancer and their relatives. Successful implementation depends on understanding and addressing the experiences, barriers, and preferences of the people served.
Methods: We conducted a remote, human-centered design research study of people with ovarian, fallopian tube, or peritoneal cancer (probands) and people with a family history of ovarian cancer (relatives) at three integrated health systems between May and September 2021. Participants completed activities to elicit their preferences about ovarian cancer genetic testing messaging and to design their ideal experience receiving an invitation to participate in genetic testing. Interview data were analyzed using a rapid thematic analysis approach.
Results: We interviewed 70 participants and identified five preferred experiences for a traceback program. Participants strongly prefer discussing genetic testing with their doctor but are comfortable discussing with other clinicians. The most highly preferred experience for both probands and relatives was to discuss with a knowledgeable clinician who could answer questions, followed by directed (sent directly to specific people) or passive (shared in a public area) communication. Repeated contact was acceptable for reminders.
Conclusion: Participants were open to receiving information about traceback genetic testing and recognized its value. Participants preferred discussing genetic testing with a trusted clinician. Directed communication was preferable to passive communication. Other valued information included how genetic tests help their family and the cost of genetic testing. These findings are informing traceback cascade genetic testing programs at all three sites.
(© 2023 The Author(s). Published by S. Karger AG, Basel.)
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معلومات مُعتمدة: U01 CA240747 United States CA NCI NIH HHS
فهرسة مساهمة: Keywords: Cascade testing; Genetic testing; Human-centered design; Ovarian cancer; Traceback
تواريخ الأحداث: Date Created: 20230305 Date Completed: 20231222 Latest Revision: 20240726
رمز التحديث: 20240727
مُعرف محوري في PubMed: PMC10475143
DOI: 10.1159/000529852
PMID: 36871550
قاعدة البيانات: MEDLINE
الوصف
تدمد:1662-8063
DOI:10.1159/000529852