Evidence map›Paper›PMID 36385723›Full record

ArticleJournal of genetic counseling2023

Measuring quality and value in genetic counseling: The current landscape and future directions.

Emily Higgs, Karen E Wain, Julia Wynn, Megan T Cho, Sonja Higgins, David Blaisdell, Donna Dugan, Sara Valek, Stephanie Cohen

Open access · greenAbstract read
In one paragraph

Article in Journal of genetic counseling, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
1.3field-weighted citation impact, top 18% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 7 citations in OpenAlex.

  1. Article
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  5. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 6 institutions in 1 country.

Emily HiggsCardiovascular Genetics Program, University of California, San Francisco, California, USA.ORCID 0000-0001-9450-6317
Karen E WainGeneDx, LLC, Gaithersburg, Maryland, USA.
Julia WynnDepartment of Pediatrics, Columbia University Irving Medical Center, New York, New York, USA.
Megan T ChoCenter for Precision Health Research, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.ORCID 0000-0001-5666-5376
Sonja HigginsMetis Genetics, Dallas, Texas, USA.
David BlaisdellDiscern Health, Part of Real Chemistry, San Francisco, California, USA.
Donna DuganDiscern Health, Part of Real Chemistry, San Francisco, California, USA.
Sara ValekDiscern Health, Part of Real Chemistry, San Francisco, California, USA.
Stephanie CohenAscension St. Vincent, Indianapolis, Indiana, USA.
Discerning Technologies (United States) · USColumbia University Irving Medical Center · USMetroplex Clinical Research Center · USNational Institutes of Health · USSt. Vincent Hospital · USUniversity of California, San Francisco · US

Funding

Intramural NIH HHS Z99 HG999999
6 · The paper itself

Abstract

Genetic counselors strive to provide high-quality genetic services. To do so, it is essential to define quality in genetic counseling and identify opportunities for improvement. This Professional Issues article provides an overview of the evaluation of healthcare quality in genetic counseling. The National Society of Genetic Counselors' Research, Quality, and Outcomes Committee partnered with Discern Health, a value-based healthcare policy consulting firm, to develop a care continuum model of genetic counseling. Using the proposed model, currently available quality measures relevant to genetic counseling in the US healthcare system were assessed, allowing for the identification of gaps and priority areas for further development. A total of 560 quality measures were identified that can be applied to various aspects of the care continuum model across a range of clinical specialty areas in genetic counseling, although few measures were specific to genetic counseling or genetic conditions. Areas where quality measures were lacking included: attitudes toward genetic testing, family communication, stigma, and issues of justice, equity, diversity, and inclusion. We discuss these findings and other strategies for an evidence-based approach to quality in genetic counseling. Strategic directions for the genetic counseling profession should include a consolidated approach to research on quality and value of genetic counseling, development of quality metrics and patient-experience measures, and engagement with other improvement activities. These strategies will allow for benchmarking, performance improvement, and future implementation in accountability programs which will strengthen genetic counseling as a profession that provides evidence-based high-quality care to all patients.

Indexed as

CounselorsGenetic CounselingDelivery of Health CareGenetic ServicesGenetic TestingHumansgenetic counselinggenetic servicesoutcomespatient-reported outcomesqualityquality measuresvalue

Identifiers

PMID36385723
PMCPMC12207684
OpenAlexW4309246710

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.