Exploring the Multilevel Factors and Experiences to Palliative Care Referrals in Patients with Advanced Ovarian Cancer

Abstract

Background. Ovarian cancer presents significant challenges as patients experience high symptom burden and recurrence rates despite advancements in treatment. Integrating palliative care (PC) into the care of patients with advanced ovarian cancer remains critical yet underutilized. Through a scoping review and subsequent empiric research, this dissertation aimed to elucidate the multifaceted factors influencing PC referral practices and patients' lived experiences. Method 1. The first part of the study was a scoping review which involved a comprehensive search across academic databases and journal archives from 2012 to 2023, targeting studies on advanced ovarian cancer and palliative care referral. Key terms such as 'palliative care' and 'ovarian cancer,' alongside additional terms were utilized for inclusivity. Disagreements were resolved through consensus using Rayyan and Covidence platforms, with data extraction employing a descriptive qualitative approach. Method 2. This secondary data analysis investigated patient-reported symptoms, quality of life (QOL), and palliative care (PC) referral data in women with advanced ovarian cancer within the electronic Self-Assessment and Care (eSAC) study conducted at the Gynecologic Oncology clinic at the University of Washington, Montlake campus, between September 2020 and February 2022. Data included demographic characteristics, pain intensity numerical score (PINS), and the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15 PAL). PC referral recommendations were triggered based on specific symptom and quality of life scores. Statistical analyses, encompassing descriptive statistics and logistic regression models, explored associations between patient-reported outcomes (PROs), demographic characteristics, and the likelihood of having a PC referral order. Method 3. This qualitative study examined the lived experiences of women with advanced ovarian cancer in integrating palliative care (PC) into their care using a phenomenological approach. Participants were recruited from the electronic Self-report Assessment and Care (eSAC) study at the University of Washington. Eligible participants had stage III/IV or recurrent ovarian cancer and had triggered a PC referral recommendation within the eSAC study. Telephone interviews were conducted, and data analysis followed Braun and Clarke's six-phase process, leading to a thematic understanding of their narratives. Results 1. This scoping review analyzed 13 studies revealing socioecological factors impacting PC referrals across various socioecological levels. The findings emphasized the significance of patient-specific medical conditions, particularly in ovarian cancer cases. Also, the findings underscored the importance of a comprehensive assessment of physical and psychosocial symptoms to facilitate PC referrals. Results 2. Fatigue and appetite loss were significantly greater in the group receiving a PC referral. Significant differential effects on the likelihood of PC referral across demographic subgroups were examined with several PROs. First, the likelihood of having a PC referral order with appetite loss was higher for participants in a relationship. Second, there was a significant interaction between educational status and insomnia, meaning insomnia had a different impact on the likelihood of having a PC referral order depending on the participants’ educational status. Lastly, a significant interaction was observed between QoL score and participants’ relationship status. Specifically, participants with better QoL and in a relationship status were less likely to have a PC referral order. Results 3. Participants described diagnostic and treatment events unfolding rapidly. Misunderstandings about PC's role, often conflated with hospice care, hindered acceptance. Concerns about time constraints, care coordination, and symptom management also affected readiness to engage with PC services. Conclusion. The findings of these studies emphasize the urgent need to revamp palliative care (PC) referral practices for advanced ovarian cancer patients. The results highlight the complex factors influencing PC referrals, stressing the importance of comprehensive symptom assessment and consideration of non-clinical determinants. As treatment options evolve, identifying reliable factors guiding PC referrals becomes crucial. A holistic approach is advocated to better understand patients' treatment trajectories and acknowledge the interplay of demographic factors in PRO presentation and associations with the likelihood of receiving a PC referral order. Despite some progress, patient acceptance of, and engagement with, PC remains lacking, necessitating improved communication strategies and interventions to clarify the role of PC. Collaborative efforts among stakeholders are essential for realizing patient-centered and integrated PC delivery within oncology settings.