The Development and Feasibility of a Novel Breast Cancer Awareness Intervention for Young Women with Neurofibromatosis Type 1, and their Associates

Plunkett, Caitríona Muireann (2025) The Development and Feasibility of a Novel Breast Cancer Awareness Intervention for Young Women with Neurofibromatosis Type 1, and their Associates. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

This research presents the development and feasibility of a novel breast cancer awareness (BCA) intervention for young women with neurofibromatosis type 1 (NF1) and their associates. Given the increased risk of breast cancer in this cohort, the study provides a preliminary evaluation of BCA including symptom, screening eligibility, breast checking frequency and risk knowledge, and medical consultation promptness. Patient and Public involvement was integral to intervention development and included the supervisory team, and the Childhood Tumour Trust charity, with online Padlet contributions garnering further insights from young women with NF1 (N = 2), associates (N ≈ 13), and healthcare professionals (N = 5). Systematic review: With the absence of NF1-specific interventions, BCA intervention efficacy was assessed among young women aged 18–50 years. Five studies met inclusion criteria highlighting the effectiveness of BCA interventions. However, measurement tools inconsistencies, and a lack of comprehensive application of behaviour change theory underscored the need for tailored systematic interventions and standardised measures. Study 1: Pre-post questionnaires measured NF1 BCA changes following exposure to a novel NF1 BCA animation. Adapted from the Breast-CAM, the Breast-CAM-NF1 measured changes including NF1-specific risk and screening recommendations. Data from 24 participants (N=13 young women with NF1; N=11 associates) were analysed using Wilcoxon signed rank and McNemar’s tests suggesting significant improvements of increased confidence in noticing a breast change (p = .020), a reduction in reasons for putting off going to a doctor (p = .036), and improved breast screening knowledge (p = .006). Study 2: Reflexive thematic analysis (RTA) explored researcher positionality on data interpretation, providing transparency and credibility in qualitative findings. Three positionalities were established of a woman who has had breast cancer and realises BCA importance, an ‘accidental’ researcher having never previously considered this path, and as a mother. Study 3: Feasibility was explored through interviews with young women with NF1 (N = 11) and associates (N = 8). RTA highlighted increased empowerment, persistent healthcare barriers, and the suitability of animation as a learning tool. Preliminary evaluation tentatively indicates intervention feasibility. It is recommended that future research explores long-term efficacy with wider involvement including healthcare professionals for NF1 BCA knowledge acquisition. Consideration of more accessible participant information sheets or employing other formats such as video is also recommended. A high drop-out rate (65%) was noted at the point of providing these, with one possible explanation being the length (7-pages) which may negatively affect comprehension.