Living with hepatocellular carcinoma from the patient perspective: A longitudinal study.

Abstract

373 Background: Hepatocellular carcinoma (HCC) is a growing problem. For those diagnosed with terminal HCC, there is no curative treatment. Despite a high death rate, no longitudinal studies were found examining the illness experience of patients with HCC as they are approaching death. The aim of this study was to describe the experience of living with terminal HCC and how it may affect end of life care from the perspective of patients. Methods: This was a longitudinal, prospective mixed methods pilot study using quantitative and qualitative approaches. Semi-structured interviews were conducted with a convenience sub-sample of 14 patients with HCC once a month for a 6-month period. The interview guide included questions about living with HCC, pain and symptom management strategies, treatment decisions, and any current concerns of significance. Interview data were analyzed using qualitative description. Results: This poster reports on qualitative analysis of 45 interviews from the sub-sample. Eleven patients were male and 3 were female (mean age=61.5, range=54-68 years). Findings included 4 major themes: 1) illness perceptions, 2) uncertainty about treatments over time, 3) quality of life, and 4) coping strategies. Patients perceived HCC as isolating as compared to other cancers. Patients lacked information to prepare them for the journey ahead. They struggled with symptom management over time and chose to stop treatment, delay treatment in hope of improvement, or regretted starting treatment once underway. Conclusions: For patients, the impact of HCC and treatment side effects on quality of life was challenging and filled with uncertainty. From this first step, knowledge gained is serving as the foundation for a proposed larger scale study. The goal is to develop future interventions to address challenges (e.g., symptom management and treatment decision making) at the end of life for these understudied cancer patients.