2024. AASLD Liver Meeting Abstract and Poster: 4333: UNDERSTANDING FATIGUE EXPERIENCES THROUGH QUALITATIVE INTERVIEWS WITH ADULTS LIVING WITH PRIMARY SCLEROSING CHOLANGITIS (PSC): AN ESSENTIAL FIRST STEP TOWARDS CUSTOMIZING A PSC-SPECIFIC PROMIS® MEASURE
Authors: Donna Evon, Kaya Merkler, Jing Yuan, Laura Mkumba, Lauren Wright, Nicole Lucas, Joanne Hatchett, Ricky Safer, Stephen Rossi, Bryce Reeve,
Abstract:
Background: A comprehensive understanding of fatigue experienced by adults living with PSC is necessary for the development of a PSC-specific patient-reported outcome measure that captures essential fatigue concepts and is suitable for clinical trials to assess treatment benefits.
Methods: Adults with PSC were recruited through the PSC Partners Patient Registry or their hepatologists. Participants consented and were screened for the presence, frequency, severity, and distress associated with multiple PSC-related symptoms. Purposeful sampling was used to capture a representative sample of 17 adults to engage in in-depth, individual qualitative interviews to describe key symptoms, including fatigue. Interviews were conducted virtually, audio-recorded, and transcribed. Transcripts were coded and analyzed using Nvivo. A codebook was developed to identify themes related to fatigue severity, frequency, interference, and symptom clustering.
Results: Twelve out of 17 participants who reported fatigue as a prominent symptom were asked to describe in-depth their experiences living with fatigue. Participants were, on average, 39 years old (range: 22 to 58), and diagnosed with PSC, on average, at 31 years old. Participants were 42% female, 8% Asian, 17% Black, and 75% White, and 67% had inflammatory bowel disease (IBD). Table 1 provides illustrative quotes of participants’ terminology used to describe the experience of fatigue. Half of the participants described experiencing fatigue “all the time”, while some described variation in fatigue severity throughout their day and week and several required daytime naps. Some participants felt best in the morning and described fatigue getting progressively worse throughout the day. Fatigue interfered with their daily domestic tasks, job responsibilities, and family and social activities. Fatigue impacted mental health with participants expressing feelings of frustration, sadness, and guilt. Rationing energy, breaking up daily tasks, and naps were used to cope with fatigue. Participants can describe the difference between fatigue and a poor night’s sleep or simple tiredness. All participants reported experiencing concomitant “brain fog” with fatigue, although they can occur separately. Some participants report that fatigue can be accompanied by body pain or nausea.
Conclusion: Fatigue emerged as a prominent and distressing symptom in adults with PSC. These qualitative findings will directly inform the customization of a PSC-specific PROMIS® fatigue measure with strong evidence for its content validity. The measure will be suitable for future PSC clinical trials and research to find effective treatments for people living with PSC-fatigue.