Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

• Published in: Health and quality of life outcomes 2018-07, Vol.16 (1), p.133-133, Article 133
• Main Authors: Isa, Fatima, Turner, Grace M, Kaur, Geetinder, Kyte, Derek, Slade, Anita, Pankhurst, Tanya, Kerecuk, Larissa, Keeley, Thomas, Ferguson, James, Calvert, Melanie
• Format: Article
• Language: English
• Subjects: Analysis; Anxiety; Arousal; Autonomic nervous system; Bile; Bladder; Care and treatment; Case studies; Cholangitis; Cholangitis, Sclerosing - psychology; Cholestasis; Clinical outcomes; Cognitive ability; Completion time; Correlation analysis; Diagnosis; Digestive system; Digestive system diseases; Discomfort; Domains; Fatigue; Female; Females; Gastrointestinal symptoms; Health; Health aspects; Humans; Inflammatory bowel disease; Interference; Kidney diseases; Liver; Liver cirrhosis; Liver transplantation; Longitudinal studies; Lubrication; Male; Mental depression; Mental disorders; Orthostatic tolerance; Pain; Patient outcomes; Patient Reported Outcome Measures; Patient reported outcome measures (PROMs); Primary sclerosing cholangitis; PROSPERO (Registration Number: CRD42016036544); Psychology; Quality of Life; Schedules; Schizophrenia; Signs and symptoms; Sleep; Sleep disorders; Studies; Systematic review; Websites
• ISSN: 1477-7525; 1477-7525
• DOI: 10.1186/s12955-018-0951-6

Primary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients' to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC. A systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist. Thirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study. A wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.