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

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.