Patient-reported outcomes in a multicenter randomized study of in-person versus telephone disclosure of genetic test results for cancer susceptibility.

2016 ◽  
Vol 34 (15_suppl) ◽  
pp. 1502-1502
Author(s):  
Angela R. Bradbury ◽  
Linda J. Patrick-Miller ◽  
Brian L. Egleston ◽  
Olufunmilayo I. Olopade ◽  
Michael J. Hall ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Genetic Test ◽  
Cancer Susceptibility ◽  
Randomized Study ◽  
Test Results ◽  
Genetic Test Results ◽  
Patient Reported

scholarly journals Use and Patient-Reported Outcomes of Clinical Multigene Panel Testing for Cancer Susceptibility in the Multicenter Communication of Genetic Test Results by Telephone Study

2018 ◽  
pp. 1-12
Author(s):  
Michael J. Hall ◽  
Linda J. Patrick-Miller ◽  
Brian L. Egleston ◽  
Susan M. Domchek ◽  
Mary B. Daly ◽  
...  
Keyword(s):  
State Anxiety ◽  
Patient Reported Outcomes ◽  
Genetic Test ◽  
Cancer Susceptibility ◽  
Randomized Study ◽  
Test Results ◽  
Genetic Test Results ◽  
Patient Reported ◽  
Targeted Testing ◽  
Anxiety Depression

Purpose Multigene panels (MGPs) are increasingly being used despite questions regarding their clinical utility and no standard approach to genetic counseling. How frequently genetic providers use MGP testing and how patient-reported outcomes (PROs) differ from targeted testing (eg, BRCA1/2 only) are unknown. Methods We evaluated use of MGP testing and PROs in participants undergoing cancer genetic testing in the multicenter Communication of Genetic Test Results by Telephone study (ClinicalTrials.gov identifier: NCT01736345), a randomized study of telephone versus in-person disclosure of genetic test results. PROs included genetic knowledge, general and state anxiety, depression, cancer-specific distress, uncertainty, and satisfaction. Genetic providers offered targeted or MGP testing based on clinical assessment. Results Since the inclusion of MGP testing in 2014, 395 patients (66%) were offered MGP testing. MGP testing increased over time from 57% in 2014 to 66% in 2015 ( P = .02) and varied by site (46% to 78%; P < .01). Being offered MGP testing was significantly associated with not having Ashkenazi Jewish ancestry, having a history of cancer, not having a mutation in the family, not having made a treatment decision, and study site. After demographic adjustment, patients offered MGP testing had lower general anxiety ( P = .04), state anxiety ( P = .03), depression ( P = .04), and uncertainty ( P = .05) pre-disclosure compared with patients offered targeted testing. State anxiety ( P = .05) and cancer-specific distress ( P = .05) were lower at disclosure in the MGP group. There was a greater increase in change in uncertainty ( P = .04) among patients who underwent MGP testing. Conclusion MGP testing was more frequently offered to patients with lower anxiety, depression, and uncertainty and was associated with favorable outcomes, with the exception of a greater increase in uncertainty compared with patients who had targeted testing. Addressing uncertainty may be important as MGP testing is increasingly adopted.

scholarly journals Sequence variant classification and reporting: recommendations for improving the interpretation of cancer susceptibility genetic test results

2008 ◽  
Vol 29 (11) ◽  
pp. 1282-1291 ◽  
Author(s):  
Sharon E. Plon ◽  
Diana M. Eccles ◽  
Douglas Easton ◽  
William D. Foulkes ◽  
Maurizio Genuardi ◽  
...  
Keyword(s):  
Genetic Test ◽  
Cancer Susceptibility ◽  
Sequence Variant ◽  
Variant Classification ◽  
Test Results ◽  
Genetic Test Results ◽  
Reporting Recommendations

scholarly journals The Search for an Explanation: Breast Cancer in the Context of Genetic Inheritance

2014 ◽  
Author(s):  
Christine Maheu
Keyword(s):  
Breast Cancer ◽  
Genetic Test ◽  
Cancer Susceptibility ◽  
Structured Interview ◽  
Breast Cancer Susceptibility ◽  
Breast Cancers ◽  
Test Results ◽  
Her Family ◽  
Genetic Test Results

This case study is an in-depth examination of how Erika (a pseudonym) interpreted and understood her genetic test results for breast cancer susceptibility. Her experience is presented in the form of a biography, which was built from key passages retrieved from the semi structured interview the author conducted at Erikas home. The interview data showed that Erikas interpretation and understanding of her inconclusive test results were embedded in her own and her familys experiences with breast cancer. Her interpretation of her test results was influenced by perception of risk for future breast cancers for herself and her family, as well as from the continued etiological uncertainty of her current breast cancer. Although unfinished, Erikas experience of receiving inconclusive genetic test results for breast cancer susceptibility provides examples of possible universal themes within the experience of others who receive similar test results.

Parents' long-term adjustment to the genetic test results of minors at risk for Long QT Syndrome

2004 ◽  
Author(s):  
K. S. W. H. Hendriks ◽  
F. J. M. Grosfeld ◽  
A. A. M. Wilde ◽  
J. van den Bout ◽  
I. M. van Langen ◽  
...  
Keyword(s):  
At Risk ◽  
Long Qt Syndrome ◽  
Genetic Test ◽  
Test Results ◽  
Long Qt ◽  
Genetic Test Results ◽  
Qt Syndrome

Metagnosis

2020 ◽  
Author(s):  
Danielle Spencer
Keyword(s):  
Real World ◽  
Genetic Test ◽  
Narrative Medicine ◽  
Test Results ◽  
Diagnostic Categories ◽  
Genomic Knowledge ◽  
Blade Runner ◽  
Genetic Test Results ◽  
Scant Attention ◽  
Productive Model

This book identifies and names the phenomenon of metagnosis: the experience of newly learning in adulthood of a long-standing condition. It can occur when the condition has remained undetected (e.g., colorblindness) and/or when the diagnostic categories themselves have shifted (e.g., ADHD). More broadly, it can occur with unexpected revelations bearing upon selfhood, such as surprising genetic test results. This phenomenon has received relatively scant attention, yet learning of an unknown condition is frequently a significant and bewildering revelation, subverting narrative expectations and customary categories. In addressing the topic this book deploys an evolution of narrative medicine as a robust research methodology comprising interdisciplinarity, narrative attentiveness, and creating a writerly text. Beginning with the author’s own experience of metagnosis, it explores the issues it raises—from communicability to narrative intelligibility to different ways of seeing. Next, it traces the distinctive metagnostic narrative arc through the stages of recognition, subversion, and renegotiation, discussing this trajectory in light of a range of metagnostic experiences, from Blade Runner to real-world midlife diagnoses. Finally, it situates metagnosis in relation to genetic revelations and the broader discourses concerning identity. Proposing that the figure of blindsight—drawn from the author’s metagnostic experience—offers a productive model for negotiating such revelations, the book suggests that better understanding metagnosis will not simply aid those directly affected but will also serve as a bellwether for how we will all navigate advancing biomedical and genomic knowledge, and how we may fruitfully interrogate the very notion of identity.

scholarly journals Development of a Web-Based Query Tool for Quality Assurance of Clinical Molecular Genetic Test Results

2007 ◽  
Vol 9 (1) ◽  
pp. 95-98 ◽  
Author(s):  
Matthew J. McGinniss ◽  
Rebecca Chen ◽  
Victoria M. Pratt ◽  
Arlene Buller ◽  
Franklin Quan ◽  
...  
Keyword(s):  
Quality Assurance ◽  
Genetic Test ◽  
Molecular Genetic ◽  
Test Results ◽  
Web Based ◽  
Genetic Test Results ◽  
Query Tool ◽  
Molecular Genetic Test

Patient recommendations for content and design for electronic return of genetic test results: An interview study among patients who accessed their genetic test results online (Preprint)

2021 ◽  
Author(s):  
Diane M Korngiebel ◽  
Kathleen McGlone West
Keyword(s):  
Patient Preferences ◽  
Genetic Test ◽  
Smartphone Application ◽  
Patient Portal ◽  
Genetic Test Result ◽  
Test Results ◽  
User Centered Design ◽  
Detailed Report ◽  
Genetic Test Results ◽  
Test Result

BACKGROUND Genetic test results will be increasingly made available electronically as more patient-facing tools are developed; however, little research has been done that collects patient preferences for content and design before creating results templates. OBJECTIVE This study identifies patient preferences for electronic return of genetic test results, including what considerations should be prioritized for content and design. METHODS Following User-Centered Design methods, 59 interviews were conducted using semi-structured protocols. The interviews explored content and design issues for patient portal results return for patients who received electronic results for specific types of genetic tests (pharmacogenomic, hereditary blood disorders, and positive and negative risk results for heritable cancers) or who had electronically received any type of genetic test result as well as a non-genetic test result. RESULTS In general, a majority of participants felt that there always needed to be some clinician involvement in electronic results return and that electronic coversheets with simple summaries would be helpful for facilitating that. Coversheet summaries could accompany, but not replace, the more detailed report. Participants had specific suggestions for those results summaries, such as only reporting the information that was most important for patients to understand, including next steps, and to do so using clear language free of medical jargon. Electronic results return should also include explicit encouragement for patients to contact providers with questions. Finally, many participants preferred to manage their care using their smartphones, particularly in instances where they needed to access health information on the go. CONCLUSIONS Participants recommended that a patient-friendly front section accompany the more detailed report and made suggestions for organization, content, and wording. Many used their smartphones regularly to access test results, therefore, health systems and patient portal software vendors should accommodate smartphone application design and web portal design concomitantly when developing results return platforms. CLINICALTRIAL N/A

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