Impact of a Patient-Facing Enhanced Genomic Results Report to Improve Understanding, Engagement, and Communication

Overview

Journal J Genet Couns

Publisher Wiley

Specialty Genetics

Date 2017 Dec 6

PMID 29204811

Citations 25

Authors

Janet L Williams

Alanna Kulchak Rahm

Doris T Zallen

Heather Stuckey

Kara Fultz

Audrey L Fan

Michele Bonhag

Lynn Feldman

Michael M Segal

Marc S Williams

Affiliations

Soon will be listed here.

Abstract

Trial Registration: Clinicaltrials.gov (Record 2013-0594).

Citing Articles

Genetics Navigator: protocol for a mixed methods randomized controlled trial evaluating a digital platform to deliver genomic services in Canadian pediatric and adult populations.

DAmours G, Clausen M, Luca S, Reble E, Kodida R, Assamad D BMJ Open. 2024; 14(9):e090084.

PMID: 39231549 PMC: 11407190. DOI: 10.1136/bmjopen-2024-090084.

Towards unified reporting of genome sequencing results in clinical microbiology.

Mutschler E, Roloff T, Neves A, Aamot H, Rodriguez-Sanchez B, Ramirez M PeerJ. 2024; 12:e17673.

PMID: 39131622 PMC: 11317035. DOI: 10.7717/peerj.17673.

Patient and Health Care Provider Perspectives on Patient Access to Test Results via Web Portals: Scoping Review.

Petrovskaya O, Karpman A, Schilling J, Singh S, Wegren L, Caine V J Med Internet Res. 2023; 25:e43765.

PMID: 37856174 PMC: 10623227. DOI: 10.2196/43765.

Patient Recommendations for the Content and Design of Electronic Returns of Genetic Test Results: Interview Study Among Patients Who Accessed Their Genetic Test Results via the Internet.

Korngiebel D, West K JMIRx Med. 2023; 3(2):e29706.

PMID: 37725563 PMC: 10414314. DOI: 10.2196/29706.

A personalized genomic results e-booklet, co-designed and pilot-tested by families.

Handra J, Guimond C, Jordan I, Lenahan B, Ohs K, Beauchesne R PEC Innov. 2023; 1:100039.

PMID: 37213729 PMC: 10194288. DOI: 10.1016/j.pecinn.2022.100039.

References

Kalia S, Adelman K, Bale S, Chung W, Eng C, Evans J . Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics. Genet Med. 2016; 19(2):249-255. DOI: 10.1038/gim.2016.190. View

Alterovitz G, Warner J, Zhang P, Chen Y, Ullman-Cullere M, Kreda D . SMART on FHIR Genomics: facilitating standardized clinico-genomic apps. J Am Med Inform Assoc. 2015; 22(6):1173-8. PMC: 11737838. DOI: 10.1093/jamia/ocv045. View

Chew L, Griffin J, Partin M, Noorbaloochi S, Grill J, Snyder A . Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med. 2008; 23(5):561-6. PMC: 2324160. DOI: 10.1007/s11606-008-0520-5. View

Cella D, Hughes C, Peterman A, Chang C, Peshkin B, Schwartz M . A brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire. Health Psychol. 2002; 21(6):564-72. View

Swaminathan R, Huang Y, Moosavinasab S, Buckley R, Bartlett C, Lin S . A Review on Genomics APIs. Comput Struct Biotechnol J. 2015; 14:8-15. PMC: 4669666. DOI: 10.1016/j.csbj.2015.10.004. View

Cacioppo C, Chandler A, Towne M, Beggs A, Holm I . Expectation versus Reality: The Impact of Utility on Emotional Outcomes after Returning Individualized Genetic Research Results in Pediatric Rare Disease Research, a Qualitative Interview Study. PLoS One. 2016; 11(4):e0153597. PMC: 4833284. DOI: 10.1371/journal.pone.0153597. View

Brehaut J, OConnor A, Wood T, Hack T, Siminoff L, Gordon E . Validation of a decision regret scale. Med Decis Making. 2003; 23(4):281-92. DOI: 10.1177/0272989X03256005. View

Read C, Perry D, Duffy M . Design and psychometric evaluation of the Psychological Adaptation to Genetic Information Scale. J Nurs Scholarsh. 2005; 37(3):203-8. DOI: 10.1111/j.1547-5069.2005.00036.x. View

Lerman C, Daly M, Masny A, Balshem A . Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol. 1994; 12(4):843-50. DOI: 10.1200/JCO.1994.12.4.843. View

10.

Levy H, Lopresti L, Seibert D . Twenty questions in genetic medicine--an assessment of World Wide Web databases for genetics information at the point of care. Genet Med. 2008; 10(9):659-67. DOI: 10.1097/gim.0b013e318180639d. View

11.

Condit C . Public attitudes and beliefs about genetics. Annu Rev Genomics Hum Genet. 2010; 11:339-59. DOI: 10.1146/annurev-genom-082509-141740. View

12.

Williams J, Rahm A, Stuckey H, Green J, Feldman L, Zallen D . Enhancing genomic laboratory reports: A qualitative analysis of provider review. Am J Med Genet A. 2016; 170A(5):1134-41. PMC: 5067598. DOI: 10.1002/ajmg.a.37573. View

13.

Lobach D, Sanders G, Bright T, Wong A, Dhurjati R, Bristow E . Enabling health care decisionmaking through clinical decision support and knowledge management. Evid Rep Technol Assess (Full Rep). 2012; (203):1-784. PMC: 4781172. View

14.

Stuckey H, Williams J, Fan A, Rahm A, Green J, Feldman L . Enhancing genomic laboratory reports from the patients' view: A qualitative analysis. Am J Med Genet A. 2015; 167A(10):2238-43. PMC: 4744953. DOI: 10.1002/ajmg.a.37174. View

15.

DuBenske L, Beckjord E, Hawkins R, Gustafson D . Psychometric evaluation of the Health Information Orientation Scale: a brief measure for assessing health information engagement and apprehension. J Health Psychol. 2009; 14(6):721-30. PMC: 2729509. DOI: 10.1177/1359105309338892. View

16.

Sapp J, Dong D, Stark C, Ivey L, Hooker G, Biesecker L . Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children. Clin Genet. 2013; 85(2):120-6. PMC: 3930614. DOI: 10.1111/cge.12254. View

17.

Greco K, Mahon S . The state of genomic health care and cancer. Are we going two steps forward and one step backward?. Annu Rev Nurs Res. 2012; 29:73-97. DOI: 10.1891/0739-6686.29.73. View

18.

Dearing J, Kreuter M . Designing for diffusion: how can we increase uptake of cancer communication innovations?. Patient Educ Couns. 2010; 81 Suppl:S100-10. PMC: 3000559. DOI: 10.1016/j.pec.2010.10.013. View

19.

Welch B, Kawamoto K . Clinical decision support for genetically guided personalized medicine: a systematic review. J Am Med Inform Assoc. 2012; 20(2):388-400. PMC: 3638177. DOI: 10.1136/amiajnl-2012-000892. View

20.

Suther S, Goodson P . Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genet Med. 2003; 5(2):70-6. DOI: 10.1097/01.GIM.0000055201.16487.61. View