2023. AASLD Liver Meeting Abstract and Poster: 4558-C: NETWORK ANALYSIS OF SYMPTOMS EXPERIENCED BY PATIENTS WITH PRIMARY SCLEROSING CHOLANGITIS

Authors: Melinda Wang, Amy M. Shui, Joanne Hatchett, Ruth-Anne Pai, Rachel Gomel, Mary Pressley Vyas, Sarah Curup Callif, Ricky Safer, Christopher L. Bowlus, Donna M. Evon, Jennifer C. Lai, Michael Li.

Journal: Hepatology. 78(S1):S1-S2154, October 2023.

Abstract:

Background: Patients with primary sclerosing cholangitis (PSC) experience numerous symptoms that impact quality of life. PSC Partners Seeking a Cure developed the international Our Voices survey to capture the presence, severity, and impact of PSC symptoms on quality of life. We sought to identify PSC-specific symptom clusters and relationships between these symptoms to better understand the lived experience of PSC patients.

Methods: Presence and severity of 16 symptoms potentially related to PSC were identified from the Our Voices survey. LASSO regularized partial correlation network analyses were performed to model unique interactions between symptoms. The primary analysis utilized symptoms reported within the past 6 months of survey completion. Secondary analyses included active symptoms and symptoms at their worst. Expected influence, which accounts for both positive and negative associations and assesses the nature and strength of a node’s cumulative influence within a network, was computed for all symptoms in each network. The Spinglass algorithm was employed to identify symptom communities.

Results: Among 970 total participants, 54% were women, most were white (70%), and 70% had inflammatory bowel disease (IBD). 88% of patients reported experiencing symptoms. Four dominant communities were identified across networks including psychological symptoms (anxiety, depression), gastrointestinal symptoms (anorexia, nausea/vomiting, liver pain, abdominal pain), cholestasis-related symptoms (pruritus, insomnia, night sweats, jaundice), and global symptoms (fatigue, weakness, joint pain, other pain, brain fog, encephalopathy) (Figure). Of the 16 PSC symptoms, fatigue and weakness consistently had the greatest expected influence across the multiple networks generated in the primary and secondary analyses. On subgroup analysis, symptoms with the strongest influence among patients with and without IBD were similar (IBD: fatigue and insomnia; no IBD: fatigue and anorexia).

Conclusion: Our analyses suggest that the complex relationships between PSC symptoms organize into four dominant, clinically-relevant clusters. Fatigue and weakness emerged as the symptoms with the strongest influence across the primary and secondary analyses. Our data emphasize the co-occurring nature of PSC symptoms, identify highly influential symptoms, and highlight the need to develop patient-reported outcome measures to assess changes in these key symptoms in clinical trials