Evidence map›Paper›PMID 36871550›Full record

ArticlePublic health genomics2023

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

Katrina M Romagnoli, Alanna Kulchak Rahm, Mary Cabell Jonas, Rachel Schwiter, Tracey Klinger, Ilene Ladd, Zachary Salvati, Anna DiNucci, Paula Rae Blasi, Leigh Sheridan and 2 more

Open access · diamondAbstract read
In one paragraph

Article in Public health genomics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
1.6field-weighted citation impact, top 16% 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

6 citing papers in PubMed, 5 citations in OpenAlex.

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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

12 authors at 3 institutions in 1 country.

Katrina M RomagnoliDepartment of Health System Sciences, Geisinger Health System, Danville, Pennsylvania, USA.
Alanna Kulchak RahmDepartment of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA.
Mary Cabell JonasMid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA.
Rachel SchwiterDepartment of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA.
Tracey KlingerDepartment of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA, tlklinger1@geisinger.edu.
Ilene LaddDepartment of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA.
Zachary SalvatiDepartment of Genomic Health, Geisinger Health System, Danville, Pennsylvania, USA.
Anna DiNucciMid-Atlantic Permanente Research Institute, Kaiser Permanente, Rockville, Maryland, USA.
Paula Rae BlasiKaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA.
Leigh SheridanKaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA.
Aaron ScrolKaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA.
Nora B HenriksonKaiser Permanente Washington Health Research Institute, Kaiser Permanente, Seattle, Washington, USA.
Geisinger Health System · USKaiser Permanente Washington Health Research Institute · USKaiser Permanente · US

Funding

Feasibility and Assessment of a Cascade Traceback Screening program - FACTSU01CA240747 · NCI · GEISINGER CLINIC · PI BUCHANAN, ADAM H, HENRIKSON, NORA B. · 2020 to 2023
$2.9M
NCI NIH HHS U01 CA240747
6 · The paper itself

Abstract

introductionA 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.

methodsWe 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.

resultsWe 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.

conclusionParticipants 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.

Indexed as

Delivery of Health Care, IntegratedOvarian NeoplasmsCommunicationFemaleGenetic TestingHumansCascade testingGenetic testingHuman-centered designOvarian cancerTraceback

Identifiers

PMID36871550
PMCPMC10475143
OpenAlexW4323035762

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.