Literature DB >> 29159545

Clinician-Stakeholders' Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results.

Diane M Korngiebel1, Kathleen M West2, Wylie Burke2.   

Abstract

Test results for genetic conditions, such as Lynch Syndrome (LS), have traditionally been returned by genetic counselors or other providers who can explain results implications and provide psychosocial support. Returning genetic results through an Electronic Health Record's patient portal may increase the efficiency of returning results and could activate patient follow-up; however, stakeholder input is necessary to determine acceptability and appropriate implementation for LS. Twenty interviews were conducted with clinicians from six specialties involved in LS screening that represent a range of settings. Data were analyzed using directed content analysis and thematic analysis across content categories. Participants felt that patient portals could supplement personal calls, but the potential sensitive nature of LS screening results indicated the need for caution. Others felt that LS results could be returned through portals if there were clear explanations of the result, reputable additional information available within the portal, urging follow up confirmatory testing, and a referral to a genetics specialist. Patient portals were seen as helpful for prompting patient follow-up and providing resources to notify at-risk family members. There is potential for patient portals to return LS screening and other genetic results, however we raise several issues to resolve before implementation is warranted.

Entities:  

Keywords:  Ethics; Genetic testing; Hereditary nonpolyposis colorectal cancer; Implementation science; Lynch syndrome; Patient portals; Precision medicine; Return of results

Mesh:

Year:  2017        PMID: 29159545      PMCID: PMC5860941          DOI: 10.1007/s10897-017-0179-3

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  44 in total

1.  Public expectations for return of results--time to stop being paternalistic?

Authors:  Conrad Fernandez
Journal:  Am J Bioeth       Date:  2008-11       Impact factor: 11.229

2.  NCCN increases the emphasis on genetic/familial high-risk assessment in colorectal cancer.

Authors:  Heather Hampel
Journal:  J Natl Compr Canc Netw       Date:  2014-05       Impact factor: 11.908

3.  Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

Authors:  Susan M Wolf; Wylie Burke; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

4.  EMR documentation of physician-patient communication following genomic counseling for actionable complex disease and pharmacogenomic results.

Authors:  K Sweet; A C Sturm; T Schmidlen; S Hovick; J Peng; K Manickam; A Salikhova; J McElroy; L Scheinfeldt; A E Toland; J S Roberts; M Christman
Journal:  Clin Genet       Date:  2016-07-28       Impact factor: 4.438

5.  Health literacy and patient portals.

Authors:  Yulong Gu; Martin Orr; Jim Warren
Journal:  J Prim Health Care       Date:  2015-06-01

Review 6.  A systematic review of electronic portal usage among patients with diabetes.

Authors:  Daniel J Amante; Timothy P Hogan; Sherry L Pagoto; Thomas M English
Journal:  Diabetes Technol Ther       Date:  2014-07-07       Impact factor: 6.118

7.  Integrating personalized health information from MedlinePlus in a patient portal.

Authors:  Damian Borbolla; Guilherme Del Fiol; Vanina Taliercio; Carlos Otero; Fernando Campos; Marcela Martinez; Daniel Luna; Fernan Quiros
Journal:  Stud Health Technol Inform       Date:  2014

8.  Use of Patient Portals: Personal Health Information Management in Older Adults.

Authors:  Anne Turner; Katie Osterhage; Jonathan Joe; Andrea Hartzler; Lorelei Lin; George Demiris
Journal:  Stud Health Technol Inform       Date:  2015

9.  Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing.

Authors:  Joon-Ho Yu; Tanya M Harrell; Seema M Jamal; Holly K Tabor; Michael J Bamshad
Journal:  Am J Hum Genet       Date:  2014-06-26       Impact factor: 11.025

10.  Guidelines on genetic evaluation and management of Lynch syndrome: a consensus statement by the US Multi-society Task Force on colorectal cancer.

Authors:  Francis M Giardiello; John I Allen; Jennifer E Axilbund; C Richard Boland; Carol A Burke; Randall W Burt; James M Church; Jason A Dominitz; David A Johnson; Tonya Kaltenbach; Theodore R Levin; David A Lieberman; Douglas J Robertson; Sapna Syngal; Douglas K Rex
Journal:  Am J Gastroenterol       Date:  2014-07-22       Impact factor: 10.864

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  2 in total

1.  Introduction to the "Technology in Practice" Special Issue.

Authors:  Vickie Venne; Megan Doerr
Journal:  J Genet Couns       Date:  2018-03-01       Impact factor: 2.537

2.  Features of a Patient Portal for Blood Test Results and Patient Health Engagement: Web-Based Pre-Post Experiment.

Authors:  Bas Struikman; Nadine Bol; Annelijn Goedhart; Julia C M van Weert; Esther Talboom-Kamp; Sanne van Delft; Anne E M Brabers; Liset van Dijk
Journal:  J Med Internet Res       Date:  2020-07-20       Impact factor: 5.428

  2 in total

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