UNTOLD: UNderstanding The experience of Ovarian cancer ? Life after Diagnosis: A Mixed Methods Approach

PROJECT SUMMARY There are more than 250,000 ovarian cancer survivors in the US and this number is growing. Throughout treatment for this disease, many patients encounter serious effects, including physical issues like nausea, vomiting, fatigue, sleep disruptions, peripheral neuropathy, hair loss, and sexual dysfunction, as well as psychological challenges such as cognitive dysfunction, fear of recurrence, anxiety, and depression. Comprehensively understanding how the prevalence and severity of side effects, unmet needs, and barriers to supportive care affect quality of life (QOL) in diverse ovarian cancer survivors remains a research gap and priority. Our long-term goal is to improve the survivorship experience of individuals with ovarian cancer. Our overall objective is to document 1) physical and psychosocial concerns, 2) barriers and facilitators to supportive care, and 3) factors associated with unmet needs among ovarian cancer survivors. Our central hypothesis is that ovarian cancer survivors face significant challenges, with differences in the frequency and type of concerns by patient characteristics, e.g., time since diagnosis, age, race/ethnicity, sexual identity, education, income, geographic location, and social support network. We will pursue the following specific aims: (1) describe the physical and mental health conditions of ovarian cancer survivors that impact quality of life and detail pharmacologic and non-pharmacologic interventions utilized to manage these conditions; (2) identify barriers and facilitators to accessing and receiving supportive care among ovarian cancer survivors; and (3) describe the unmet needs of ovarian cancer survivors and identify associated risk and protective factors related to the number and types of unmet needs. We will use a mixed-methods approach. We will recruit a diverse national sample of 2,000 ovarian cancer survivors in collaboration with the California Cancer Registry along with regional and national ovarian cancer advocacy groups to complete a cross-sectional survey. Among a subset, we will conduct follow-up interviews to gather additional information. The expected outcome of this study is a comprehensive description of survivorship experiences among diverse ovarian cancer survivors. This detailed information regarding their unmet needs and care gaps will serve as a call-to-action to develop and implement targeted interventions to improve QOL of individuals with ovarian cancer. The proposed research is innovative because we will assess outcomes in diverse ovarian cancer survivors, allowing for subgroup analyses and we will identify care elements that contributed either negatively or positively to survivors’ experiences. We expect our study will have a significant impact on informing effective strategies that can be readily implemented and expanded to improve the QOL of cancer survivors, an explicit goal of Healthy People 2030.