| Title: |
The development and evaluation of educational resources for young women with neurofibromatosis type 1 undergoing breast cancer surveillance |
| Authors: |
Forwood, Caitlin; Hartley, Emma; Fleming, Jane; Crook, Ashley; Nawara, Diana; Wilding, Mathilda; Thiyagarajan, Lavvina; Moore, Katrina; Jimenez, Yobelli; Saunderson, Rebecca B.; Poplawski, Nicola; Berman, Yemima |
| Contributors: |
Children’s Tumour Foundation of Australia; Human Genetics Society of Australia and the Nigel Clarke Memorial Education Bursary; RNSH No. 2 Trust Fund supported the Advanced Trainee Research Program; Joint Venture Partners |
| Source: |
Women's Health ; volume 21 ; ISSN 1745-5057 1745-5065 |
| Publisher Information: |
SAGE Publications |
| Publication Year: |
2025 |
| Description: |
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. |
| Document Type: |
article in journal/newspaper |
| Language: |
English |
| DOI: |
10.1177/17455057251337118 |
| Availability: |
https://doi.org/10.1177/17455057251337118; https://journals.sagepub.com/doi/pdf/10.1177/17455057251337118; https://journals.sagepub.com/doi/full-xml/10.1177/17455057251337118 |
| Rights: |
https://creativecommons.org/licenses/by-nc/4.0/ ; https://journals.sagepub.com/page/policies/text-and-data-mining-license |
| Accession Number: |
edsbas.1D68DBC |
| Database: |
BASE |