Evidence map›Paper›PMID 36548287›Full record

ArticlePloS one2022

Cancer prevention in cancer predisposition syndromes: A protocol for testing the feasibility of building a hereditary cancer research registry and nurse navigator follow up model.

Holly Etchegary, April Pike, Rebecca Puddester, Kathy Watkins, Mike Warren, Vanessa Francis, Michael Woods, Jane Green, Sevtap Savas, Melanie Seal and 7 more

Open access · goldAbstract read
In one paragraph

Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed, 8 citations in OpenAlex.

  1. Article
  2. Article
  3. An integrative review on the oncology nurse navigator role in the Canadian context.Canadian oncology nursing journal = Revue canadienne de nursing oncologique · 2023
    Article
  4. Canadian oncology nursing journal = Revue canadienne de nursing oncologique · 2023
    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

17 authors at 3 institutions in 1 country.

Holly EtchegaryClinical Epidemiology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.ORCID 0000-0001-9673-0726
April PikeFaculty of Nursing, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Rebecca PuddesterFaculty of Nursing, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Kathy WatkinsCentre for Nursing and Health Studies, Eastern Health, St. John's, Newfoundland, Canada.
Mike WarrenPatient Partner, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Vanessa FrancisPatient Partner, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Michael WoodsDivision of Biomedical Sciences, Discipline of Oncology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Jane GreenDivision of Biomedical Sciences, Discipline of Oncology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Sevtap SavasDivision of Biomedical Sciences, Discipline of Oncology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.ORCID 0000-0002-7324-938X
Melanie SealDiscipline of Oncology, Faculty of Medicine, Memorial University of Newfoundland, Cancer Care Program, Eastern Health, St. John's, Newfoundland, Canada.
Zhiwei GaoClinical Epidemiology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Susan AveryFamily Medicine, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Fiona CurtisProvincial Medical Genetics Program, Eastern Health, St. John's, Newfoundland, Canada.
Jerry McGrathGastroenterology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Donald MacDonaldNewfoundland and Labrador Centre for Health Information, St. John's, Newfoundland, Canada.
T Nadine BurryClinical Epidemiology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Lesa DawsonObstetrics and Gynecology, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Memorial University of Newfoundland · CASt. John’s Health Sciences Centre · CANewfoundland and Labrador Centre for Applied Health Research · CA

Funding

CIHR 179835
6 · The paper itself

Abstract

Monogenic, high penetrance syndromes, conferring an increased risk of malignancies in multiple organs, are important contributors to the hereditary burden of cancer. Early detection and risk reduction strategies in patients with a cancer predisposition syndrome can save their lives. However, despite evidence supporting the benefits of early detection and risk reduction strategies, most Canadian jurisdictions have not implemented programmatic follow up of these patients. In our study site in the province of Newfoundland and Labrador (NL), Canada, there is no centralized, provincial registry of high-risk individuals. There is no continuity or coordination of care providing cancer genetics expertise and no process to ensure that patients are referred to the appropriate specialists or risk management interventions. This paper describes a study protocol to test the feasibility of obtaining and analyzing patient risk management data, specifically patients affected by hereditary breast ovarian cancer syndrome (HBOC; BRCA 1 and BRCA 2 genes) and Lynch syndrome (LS; MLH1, MSH2, MSH6, and PMS2 genes). Through a retrospective cohort study, we will describe these patients' adherence to risk management guidelines and test its relationship to health outcomes, including cancer incidence and stage. Through a qualitative interviews, we will determine the priorities and preferences of patients with any inherited cancer mutation for a follow up navigation model of risk management. Study data will inform a subsequent funding application focused on creating and evaluating a research registry and follow up nurse navigation model. It is not currently known what proportion of cancer mutation carriers are receiving care according to guidelines. Data collected in this study will provide clinical uptake and health outcome information so gaps in care can be identified. Data will also provide patient preference information to inform ongoing and planned research with cancer mutation carriers.

Indexed as

Genetic Predisposition to DiseaseNeoplastic Syndromes, HereditaryBreast NeoplasmsCanadaFeasibility StudiesFollow-Up StudiesGenetic TestingHumansRegistriesRetrospective Studies

Identifiers

PMID36548287
PMCPMC9778977
OpenAlexW4312091521

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.