PMID- 35347534 OWN - NLM STAT- MEDLINE DCOM- 20221115 LR - 20230104 IS - 1573-2568 (Electronic) IS - 0163-2116 (Linking) VI - 67 IP - 12 DP - 2022 Dec TI - Patient-Predicted Outcomes Are Associated with Quality of Life in Patients with Primary Sclerosing Cholangitis. PG - 5483-5492 LID - 10.1007/s10620-022-07482-z [doi] AB - BACKGROUND: Primary sclerosing cholangitis (PSC) is a chronic, progressive liver disease, and many patients ultimately require liver transplantation (LT). PSC also confers an increased risk of malignancies, including cholangiocarcinoma (CCA) and colorectal cancer. AIMS: This study aimed to evaluate patient-perceived outcomes and the extent to which these impact health-related quality of life (HRQoL). METHODS: Patients with PSC completed a risk perception questionnaire, the Short Form-36 (SF-36), and the Chronic Liver Disease Questionnaire. Multivariable models were used to determine factors associated with patient-perceived risks of malignancy, LT, and life expectancy, as well as their relationship with HRQoL scores. RESULTS: A total of 95 patients completed the risk perception questionnaire, and 73 returned the remaining instruments. The estimated risks varied widely. Half overestimated their one-year or lifetime CCA risk, while some predicted zero chance. Predicted LT risk was the only outcome concordant with disease severity. Pruritus was associated with higher predicted one-year risks and lower life expectancy. Lifetime CCA and LT risks were associated with the SF-36 physical component score, while perceived life expectancy was strongly associated with mental health domains, including the SF-36 mental component score. CONCLUSIONS: Predicted prognosis varies widely among patients with PSC and is influenced more by symptoms than objective disease severity. The psychological burden of shorter perceived life expectancy impacts mental HRQoL more than the risks of malignancy or LT. These findings highlight an opportunity for improved patient communication regarding these outcomes, as well as the importance of discussing them, as they may impact HRQoL. CI - (c) 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature. FAU - Henson, Jacqueline B AU - Henson JB AUID- ORCID: 0000-0003-3488-6615 AD - Division of Gastroenterology, Department of Medicine, Duke University School of Medicine, DUMC 3913, Durham, NC, 27710, USA. jackie.henson@duke.edu. FAU - Helzberg, James H AU - Helzberg JH AD - Department of Medicine, Duke University School of Medicine, Durham, NC, USA. FAU - Muir, Andrew J AU - Muir AJ AD - Division of Gastroenterology, Department of Medicine, Duke University School of Medicine and Duke Clinical Research Institute, Durham, NC, USA. LA - eng PT - Journal Article DEP - 20220328 PL - United States TA - Dig Dis Sci JT - Digestive diseases and sciences JID - 7902782 SB - IM MH - Humans MH - Quality of Life MH - *Cholangitis, Sclerosing/complications MH - *Cholangiocarcinoma/diagnosis MH - *Liver Diseases/complications MH - Bile Ducts, Intrahepatic/pathology MH - *Bile Duct Neoplasms/complications OTO - NOTNLM OT - Cholangitis, sclerosing OT - Prognosis OT - Quality of life OT - Surveys and questionnaires EDAT- 2022/03/30 06:00 MHDA- 2022/11/16 06:00 CRDT- 2022/03/29 05:48 PHST- 2022/01/05 00:00 [received] PHST- 2022/03/07 00:00 [accepted] PHST- 2022/03/30 06:00 [pubmed] PHST- 2022/11/16 06:00 [medline] PHST- 2022/03/29 05:48 [entrez] AID - 10.1007/s10620-022-07482-z [pii] AID - 10.1007/s10620-022-07482-z [doi] PST - ppublish SO - Dig Dis Sci. 2022 Dec;67(12):5483-5492. doi: 10.1007/s10620-022-07482-z. Epub 2022 Mar 28.