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

Forwood, C; Hartley, E; Fleming, J; Crook, A; Nawara, D; Wilding, M; Thiyagarajan, L; Moore, K; Jimenez, Y; Saunderson, RB; Poplawski, N; Berman, Y

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

Forwood, C Hartley, E Fleming, J Crook, A

Nawara, D Wilding, M Thiyagarajan, L Moore, K Jimenez, Y Saunderson, RB Poplawski, N Berman, Y

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Publisher:: SAGE PUBLICATIONS LTD
Publication Type:: Journal Article
Citation:: Womens Health (Lond), 2025, 21, pp. 17455057251337118
Issue Date:: 2025

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Field	Value	Language
dc.contributor.author	Forwood, C
dc.contributor.author	Hartley, E
dc.contributor.author	Fleming, J
dc.contributor.author	Crook, A https://orcid.org/0000-0001-5578-0460
dc.contributor.author	Nawara, D
dc.contributor.author	Wilding, M
dc.contributor.author	Thiyagarajan, L
dc.contributor.author	Moore, K
dc.contributor.author	Jimenez, Y
dc.contributor.author	Saunderson, RB
dc.contributor.author	Poplawski, N
dc.contributor.author	Berman, Y
dc.date.accessioned	2025-11-27T04:07:37Z
dc.date.available	2025-11-27T04:07:37Z
dc.date.issued	2025
dc.identifier.citation	Womens Health (Lond), 2025, 21, pp. 17455057251337118
dc.identifier.issn	1745-5057
dc.identifier.issn	1745-5065
dc.identifier.uri	http://hdl.handle.net/10453/190801
dc.description.abstract	BACKGROUND: Women 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. OBJECTIVES: This study aimed to develop and evaluate NF1-specific patient-centric educational resources about breast cancer surveillance. DESIGN: A 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. METHODS: A 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. RESULTS: Nine 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. CONCLUSIONS: Information 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.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE PUBLICATIONS LTD
dc.relation.ispartof	Womens Health (Lond)
dc.relation.isbasedon	10.1177/17455057251337118
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1114 Paediatrics and Reproductive Medicine, 1117 Public Health and Health Services
dc.subject.classification	Obstetrics & Reproductive Medicine
dc.subject.classification	3215 Reproductive medicine
dc.subject.classification	4206 Public health
dc.subject.mesh	Humans
dc.subject.mesh	Female
dc.subject.mesh	Neurofibromatosis 1
dc.subject.mesh	Breast Neoplasms
dc.subject.mesh	Adult
dc.subject.mesh	Patient Education as Topic
dc.subject.mesh	Pilot Projects
dc.subject.mesh	Prospective Studies
dc.subject.mesh	Longitudinal Studies
dc.subject.mesh	Pamphlets
dc.subject.mesh	Middle Aged
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Humans
dc.subject.mesh	Neurofibromatosis 1
dc.subject.mesh	Breast Neoplasms
dc.subject.mesh	Longitudinal Studies
dc.subject.mesh	Prospective Studies
dc.subject.mesh	Pilot Projects
dc.subject.mesh	Pamphlets
dc.subject.mesh	Adult
dc.subject.mesh	Middle Aged
dc.subject.mesh	Female
dc.subject.mesh	Patient Education as Topic
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Humans
dc.subject.mesh	Female
dc.subject.mesh	Neurofibromatosis 1
dc.subject.mesh	Breast Neoplasms
dc.subject.mesh	Adult
dc.subject.mesh	Patient Education as Topic
dc.subject.mesh	Pilot Projects
dc.subject.mesh	Prospective Studies
dc.subject.mesh	Longitudinal Studies
dc.subject.mesh	Pamphlets
dc.subject.mesh	Middle Aged
dc.subject.mesh	Surveys and Questionnaires
dc.title	The development and evaluation of educational resources for young women with neurofibromatosis type 1 undergoing breast cancer surveillance.
dc.type	Journal Article
utslib.citation.volume	21
utslib.location.activity	United States
utslib.for	1114 Paediatrics and Reproductive Medicine
utslib.for	1117 Public Health and Health Services
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/4.0/
dc.date.updated	2025-11-27T04:07:36Z
pubs.publication-status	Published
pubs.volume	21

Abstract:

BACKGROUND: Women 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. OBJECTIVES: This study aimed to develop and evaluate NF1-specific patient-centric educational resources about breast cancer surveillance. DESIGN: A 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. METHODS: A 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. RESULTS: Nine 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. CONCLUSIONS: Information 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.

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http://hdl.handle.net/10453/190801