Sexual and gender minority populations may be at risk of suboptimal experiences throughout the cancer care continuum. There is limited population-level data available describing experiences and needs of lesbian, gay, bisexual, transgender or intersex (LGBTI) survivors of cancer in Australia, and limited evidence to guide culturally safe and appropriate care. We used two approaches to address these gaps:
1) secondary analyses of registry-based cross sectional survey data to compare quality of life, social difficulties and unmet needs of cancer survivors who identify LGBTI, with those who do not; and
2) qualitative systematic review and meta-synthesis to understand the experiences and needs of LGBTI cancer survivors.
The overall survey response rate was 46.1% (2115/4674). Only 33 (1.6%) responded positively to the question “Do you identify as LGBTI?”; 89 (4.2%) declined to disclose their status. LGBTI respondents were more likely to be younger at diagnosis, live alone, work full-time and be born in Australia. Preliminary results suggest LGBTI respondents (vs non-LGBTI respondents) report greater unmet needs for diet and lifestyle advice (42% vs 19%, p<0.05), and may have greater difficulties with anxiety/depression (45% vs 35%, n.s.) and body image (42% vs 30%, n.s.). LGBTI respondents reported fewer difficulties with communication (12% vs 22%, p<0.05) and financial services (8% vs 18%, p<0.05) and less need for support group information (2% vs 10%, p<0.01) compared with non-LGBTI respondents.
The systematic review (PROSPERO ID CRD42017067753) included 15 studies of lesbian, gay and bisexual (LGB) participants. Gender minorities were not represented. Thematic analysis of qualitative data revealed six themes: sexual orientation disclosure; experiences and fear of homophobia; positive and negative healthcare provider behaviors; heteronormative systems and care; inadequacy of support groups; and unmet needs for patient-centred care and LGB-specific information. Culturally appropriate care includes not assuming heterosexuality, use of inclusive language and involving partners in care.