Disparate Barriers to Care Among Ovarian Cancer Patients in Managing Their Sleep Disturbance and Fatigue

OBJECTIVES: Sleep disturbance and fatigue are well-documented among people with ovarian cancer (OC) and associated with poor health-related quality of life (HRQoL) outcomes. However, the barriers to accessing care and unmet needs for sleep disturbance and fatigue are underexplored. This study assessed the impact of sleep disturbance and fatigue among patients with advanced OC and explored how barriers to care created additional burdens by race, ethnicity, and socioeconomic status.

METHODS: Data were collected from interviews with 20 stage III/IV OC patients diagnosed within three years. The sample, recruited via Cancer Support Community’s network and advocacy organizations, was stratified by sociodemographics, disease phase, and treatment type. Semi-structured interviews lasted between 43-107 minutes. Data were coded based on emergent themes on sleep and fatigue issues, demographics, and clinical characteristics.

RESULTS: Most participants expressed significant unmet needs in managing their sleep disturbance and fatigue, compounded by barriers to care. These barriers included financial and work-related distress, medical distrust, perceived discrimination, and reluctance to seek psychosocial support, and were more frequently reported by Black, Latino, and multi-racial participants, and those with lower income and fewer years of education. There is significant evidence of disparities from this qualitative inquiry that warrant further investigation.

CONCLUSIONS: Findings suggest that Black, Latino, and multi-racial patients, and those with lower levels of education and income, experience greater barriers to care, which may exacerbate the burden of sleep and fatigue issues. Healthcare providers should consider additional screening for sleep and fatigue issues for patients with greater barriers to accessing care. Providing robust psychosocial support, especially for marginalized communities, may help address unmet needs regarding sleep disturbance and fatigue. Further research could identify the causal mechanisms in this relationship with a larger sample and help address the disparities in unmet needs.