Evidence map›Paper›PMID 30600607›Full record

ArticleCancer medicine2019

Next-generation sequencing in precision oncology: Patient understanding and expectations.

J Scott Roberts, Michele C Gornick, Lan Q Le, Natalie J Bartnik, Brian J Zikmund-Fisher, Arul M Chinnaiyan, MI-ONCOSEQ Study team

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Cancer medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
36citing papers in PubMed, 4 pooled it
–field-weighted citation impact
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

36 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Trial
  6. Trial
  7. Article
  8. Article
  9. Article
  10. Article
  11. Article
  12. Observational
  13. Review
  14. Review
  15. Review
  16. Article
  17. Review
  18. Article
  19. Article
  20. Preparing for the unexpected: Recommendations for returning secondary findings in late-stage cancer care.Genetics in medicine : official journal of the American College of Medical Genetics · 2024
    Article
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

7 authors.

J Scott RobertsDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan.ORCID 0000-0003-1083-8299
Michele C GornickCenter for Bioethics & Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, Michigan.ORCID 0000-0002-3451-8858
Lan Q LeDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan.
Natalie J BartnikDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan.
Brian J Zikmund-FisherDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan.ORCID 0000-0002-1637-4176
Arul M ChinnaiyanRogel Cancer Center, University of Michigan Medical School, Ann Arbor, Michigan.
MI-ONCOSEQ Study team

Funding

Sequencing, Analysis, and Interpretation of SequencingUM1HG006508 · NHGRI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI PIENTA, KENNETH J., PIENTA, KENNETH J. · 2013 to 2016
$7.8M
NHGRI NIH HHS UM1 HG006508
6 · The paper itself

Abstract

backgroundImplementation of precision oncology interventions poses several challenges to informed consent and patient education. This study assessed cancer patients' understanding, expectations, and outcomes regarding participation in research examining the impact of matched tumor and germline sequencing on their clinical care.

methodsA total of 297 patients (mean age: 59 years; 50% female; 96% white) with refractory, metastatic cancer were surveyed, including 217 who completed surveys both before and after undergoing integrated whole exome and transcriptome sequencing as part of a larger clinical research study.

resultsAt baseline, the vast majority of patients expected to receive several potential direct benefits from study participation, including written reports of sequencing findings (88%), greater understanding of the causes of their cancer (74%), and participation in clinical trials for which sequencing results would make them eligible (84%). In most cases, these benefits were not realized by study completion. Despite explanations from study personnel to the contrary, most participants (67%-76%) presumed that incidental germline sequencing findings relevant to noncancerous health conditions (eg, diabetes) would automatically be disclosed to them. Patients reported low levels of concern about study risks at baseline and low levels of regret about study participation at follow-up.

conclusionsFindings suggest that cancer patients participating in precision oncology intervention research have largely unfulfilled expectations of direct benefits related to their study participation. Increased focus on patient education to supplement the informed consent process may help manage patients' expectations regarding the extent and likelihood of benefits received as a result of undergoing genomic sequencing.

Indexed as

High-Throughput Nucleotide SequencingAdultAgedAged, 80 and overCommunicationFemaleHumansInformed ConsentMaleMiddle AgedMotivationNeoplasmsPrecision MedicineSurveys and QuestionnairesYoung Adultgenome sequencinginformed consentpatient educationprecision oncology

Identifiers

PMID30600607
PMCPMC6346219

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.