Evidence map›Paper›PMID 40581956›Full record

ArticleWomen's health (London, England)

The development and evaluation of educational resources for young women with neurofibromatosis type 1 undergoing breast cancer surveillance.

Caitlin Forwood, Emma Hartley, Jane Fleming, Ashley Crook, Diana Nawara, Mathilda Wilding, Lavvina Thiyagarajan, Katrina Moore, Yobelli Jimenez, Rebecca B Saunderson and 2 more

Abstract read
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Article in Women's health (London, England). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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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

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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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.

Caitlin ForwoodDepartment of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia.ORCID 0000-0003-0131-1954
Emma HartleyFaculty of Health and Medicine, Northern Clinical School, University of Sydney, Sydney, NSW, Australia.ORCID 0000-0002-1163-176X
Jane FlemingDepartment of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia.
Ashley CrookDepartment of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia.ORCID 0000-0001-5578-0460
Diana NawaraGraduate School of Health, University of Technology Sydney, Sydney, NSW, Australia.ORCID 0009-0007-9201-6526
Mathilda WildingDepartment of Cancer Services, NSLHD Familial Cancer Service, Royal North Shore Hospital, Sydney, NSW, Australia.ORCID 0000-0001-6054-039X
Lavvina ThiyagarajanDepartment of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia.
Katrina MooreDepartment of Breast Surgery, Royal North Shore Hospital, Sydney, NSW, Australia.
Yobelli JimenezFaculty of Medicine and Health, Discipline of Medical Imaging Science, University of Sydney, Sydney NSW, Australia.
Rebecca B SaundersonFaculty of Health and Medicine, Northern Clinical School, University of Sydney, Sydney, NSW, Australia.
Nicola PoplawskiAdult Genetics Unit, Royal Adelaide Hospital, Adelaide, SA, Australia.ORCID 0000-0002-9372-3325
Yemima BermanDepartment of Clinical Genetics, Royal North Shore Hospital, Sydney, NSW, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundWomen with neurofibromatosis type 1 (NF1) have an increased risk of breast cancer and poorer 5-year survival. Current breast surveillance patient information resources may be inappropriate for this cohort due to increased cognitive deficits and cancer worry.

objectivesThis study aimed to develop and evaluate NF1-specific patient-centric educational resources about breast cancer surveillance.

designA pilot, prospective longitudinal cohort study was conducted through a Sydney tertiary hospital (Royal North Shore Hospital) adult NF1 clinic and an established breast cancer risk management clinic.

methodsA brochure was developed with input from stakeholders and women with NF1 participating in breast surveillance. The content was adapted to create a webpage and animation evaluated through clinician and patient surveys. Final iterations of the resources were based on stakeholder feedback.

resultsNine semi-structured interviews were conducted with women with NF1 after breast surveillance. All considered the brochure acceptable and valuable and supported sharing the resource. Fifty-seven patient and clinician surveys were also completed, with the webpage and animation highly rated regarding acceptability, usefulness, and relevance.

conclusionsInformation in three media has been developed specifically for women with NF1, considering breast surveillance to increase understanding, provide reassurance, and as a memory aid to support clinician consultation.

Indexed as

Breast NeoplasmsNeurofibromatosis 1PamphletsPatient Education as TopicAdultFemaleHumansLongitudinal StudiesMiddle AgedPilot ProjectsProspective StudiesSurveys and Questionnairesbreast cancer surveillanceeducation resourceneurofibromatosis type 1

Identifiers

PMID40581956
PMCPMC12206990

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LicenceCC BY-NC
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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.