Symptom Network Analysis in Patients With Primary Sclerosing Cholangitis.

introductionPatients with primary sclerosing cholangitis (PSC) experience numerous symptoms that impact quality of life. We sought to identify PSC-specific symptom clusters and relationships between symptoms to better understand the lived experience of PSC patients.

methodsPresence and severity of 16 symptoms were identified from the international "Our Voices" survey collected by PSC Partners Seeking A Cure in 2020. LASSO-regularized partial correlation network analysis was performed using Spearman correlations. The primary analysis utilized symptoms reported within the past 6 months of survey completion, with subgroup analyses conducted on patients with and without inflammatory bowel disease (IBD). Expected influence was computed to quantify the importance of each measure within networks. The Spinglass algorithm was employed to identify communities within networks.

resultsAmong 970 total participants, 54% were women, and 70% had IBD. Four dominant communities were identified across networks, including global symptoms, psychological symptoms, gastrointestinal symptoms, and cholestatic-related symptoms. Of the 16 symptoms included in network analyses, fatigue and weakness had the most positive influence across multiple networks and across different communities within each network.

conclusionsThe complex relationship between co-occurring symptoms in PSC organizes into four dominant symptom clusters. FTG and WEA emerged as strongly influential symptoms that consistently were associated with other symptoms. Our analyses emphasize the complex, co-occurring nature of PSC symptoms, identify highly influential symptoms, and highlight the need to develop patient-reported outcome symptom measures to assess changes in these key symptoms in clinical trials and clinical practice.