Patients with advanced ovarian cancer and their experiences and perceptions of sleep disturbance and fatigue across the treatment trajectory: A qualitative study
Sleep disturbance and fatigue are prevalent among patients with advanced ovarian cancer (OC) and associated with poor health-related quality of life (HRQoL). This study aimed to illustrate the lived experiences of OC patients with sleep disturbance and fatigue and the range of factors that they perceive as contributing to these symptoms. Individual semi-structured interviews were conducted with twenty patients with Stage III and IV OC diagnosed and treated within three years (17/20 receiving treatment). Interview transcripts were analyzed based on emergent themes in the data and study goals. Participants reported high levels of sleep disturbance and fatigue, which interfered with their cognitive, social, and physical function. The nature of their sleep and fatigue issues varied across the treatment trajectory. The majority (16/20) used chemotherapy as a benchmark to assess their current symptom burden. Fatigue and sleep disturbance were described as more intense and cyclic, with the highest symptom burden immediately following chemotherapy infusions followed by periodic improvement between treatments, whereas symptoms were less intense, but more persistent during maintenance therapy. Participants pursued a variety of strategies to manage symptoms, but fatigue persisted among thirteen of twenty participants. Participants were dissatisfied with providers' lack of communication and recommendations to manage symptoms. Findings underscore that while sleep disturbance and fatigue are intense among participants with OC, the lived experiences of these symptoms are qualitatively distinct at different points during treatment. Participants' dissatisfaction with providers' communication suggests the need for improved screening and scaled interventions for advanced OC patients.