MySurvivorCare (MSC) Study Summaries

Menopausal symptoms are a common and often distressing consequence of cancer treatment for women, yet they are frequently under-recognised and under-treated. Symptoms such as hot flushes, sleep disturbance, mood changes, vaginal dryness, and pain can significantly affect quality of life. Many women report feeling unsupported in managing these issues, with limited access to evidence-based care—particularly in rural and remote areas.

The MySurvivorCare (MSC) project aims to address this gap by developing a patient-driven, stepped-care digital platform to support the management of menopausal symptoms after cancer. The platform will empower women to self-manage where appropriate, provide resources to share with their GP, and ensure timely referral to specialist care when needed.

The project is being delivered in four stages, moving from understanding the scope of the problem, to identifying barriers and enablers, through to co-designing and testing a digital tool that is practical, acceptable, and scalable.

Stage 1: Scoping Survey (Completed)

A scoping survey was conducted with female cancer survivors across tumour streams to assess prevalence, severity, bother, interference, and distress associated with menopausal symptoms (including vasomotor symptoms, mood disturbance, sleep disturbance, vulvovaginal dryness/irritation, pain during sex, and urinary discomfort). And menopause-related quality of life, symptom management, satisfaction with treatments, and unmet needs. Comparable data were collected across tumour streams using consistent PROMs, and outcomes were compared between MSAC (Menopause Symptoms After Cancer) clinic participants and community-based participants.

Stage 2: Barriers and Enablers Study (Completed)

A qualitative study explored the feasibility of a patient-driven stepped-care model through interviews with patients and clinicians (GPs, nurses, and specialists). Key insights included: Patients’ willingness to use the platform, share clinical guidelines with their GP, and recommend the platform to peers; Barriers and enablers to care, including access challenges for rural and remote populations; Clinicians’ openness to recommending the platform, accepting guidelines provided by patients, and engaging with referral pathways. Practical implementation strategies were identified to inform development of the severity-stratification tool, stepped-care model, and online platform.

Stage 3 – Co-Design and Prototype Development (In Progress)

A prototype of the MySurvivorCare (MSC) Web-based App is being co-designed using a participatory, iterative approach. The process involves designing the initial prototype based on findings from Stages 1 and 2 and ongoing refinement through focus group workshops with women living with and beyond cancer, healthcare professionals, researchers, and technical partners (designers/developers). This will result in a co-designed prototype app that is practical, user-friendly, and responsive to stakeholder needs, with feedback guiding refinement into a beta version of the platform.

Stage 4: Feasibility Testing and User Experience (Planned)

The MSC Beta Version will undergo a small RCT feasibility study. Participants will be allocated to tailored care options (e.g., online CBT, GP consultation with guidelines, or referral to specialist services). The primary hypothesis is that ≥80% of participants will comply with their allocated care pathway. We will also conduct a GP sub-study, these interviews will assess GP engagement, willingness to support platform use, and perceived barriers/enablers to delivering optimal guideline-based care. The aim is to collect evidence of feasibility, usability, and acceptability of the MSC platform among women with a history of breast cancer and their GPs. Also to collect preliminary data on health outcomes, including reduction of vasomotor symptoms (e.g., hot flushes, night sweats) and improved quality of life. Insights to guide the design and evaluation of a fully functional “live” MSC platform for future implementation.