Ms Robyn Smith1, Lisa Caterina1, Charlie Durazza1, Gabrielle Reid1
1Inherited Cancers Australia, Narrabeen, Australia
Biography:
Robyn is the Programs and Advocacy Manager at Inherited Cancers Australia. She has a background in finance and health promotion. Robyn is a keen advocate for patients making informed decisions about managing their inherited cancer risk. She is part of several genomics working groups and enjoys contributing to cancer genetics focused research.
Aims:
To explore the lived experiences, care pathways, decision making, and information needs of individuals experiencing medically induced menopause, using the inherited cancers population, to inform development of targeted, evidence-based resources.
Methods:
A mixed methods study was conducted by Inherited Cancers Australia in partnership with Jean Hailes for Women’s Health. ICA facilitated three focus groups with community members experiencing or having experienced MIM (n=20). Participants completed a supplementary online survey (n=18). Participants were recruited via convenience sampling; informed consent was obtained and data deidentified. Focus group data were analysed thematically and survey data descriptively. Structured feedback was additionally collected from healthcare professionals across primary and specialist care (n=9).
Results:
Experiences of MIM were overwhelmingly negative, with over 90% of descriptors reflecting emotional, physical, or psychosocial burden. Care was fragmented, information inconsistent, and clinician-initiated discussion limited. 61% reported insufficient information for informed decision-making, 38% accessed no healthcare support, and most relied on social media for information. Significant impacts were reported on mental health, cognition, relationships, and work. Healthcare professionals confirmed gaps in knowledge, resources, and tailored guidance.
Conclusions:
MIM is an under recognised consequence of cancer risk management and treatment. Improved clinician education, clearer pathways, and codesigned resources are urgently required.