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PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring quality of life in chronic liver disease.

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BACKGROUND AIMS The Patient-Reported Outcomes Measurement Information System (PROMIS) is increasingly used to measure health-related quality of life (HRQOL), yet, it has not been well-studied in chronic liver disease (CLD).… Click to show full abstract

BACKGROUND AIMS The Patient-Reported Outcomes Measurement Information System (PROMIS) is increasingly used to measure health-related quality of life (HRQOL), yet, it has not been well-studied in chronic liver disease (CLD). This study compares PROMIS Profile-29 to Short-Form Health Survey (SF-36) and Chronic Liver Disease Questionnaire (CLDQ) in patients with CLD. APPROACH RESULTS 204 adult outpatients with CLD completed PROMIS-29, CLDQ, SF-36 and usability questionnaires. Mean scores were compared between groups, correlation between domain scores were assessed and floor/ceiling effects were calculated. Etiologies of CLD were NAFLD (44%), hepatitis C (16%) and alcohol (16%). 53% had cirrhosis and 33% were Child-Pugh B/C with a mean Model for End-stage Liver Disease Score of 12.0. In all 3 tools, the poorest scores were in physical function and fatigue. Presence of cirrhosis or complications was associated with worse scores in most PROMIS Profile-29 domains indicating known groups validity. Strong correlations (r ≥ 0.7) were present between Profile-29 and SF-36 or CLDQ domains measuring similar concepts, indicating strong convergent validity. Profile-29 was completed faster than SF-36 and CLDQ (5.4 ± 3.0, 6.7 ± 3.3, 6.5 ± 5.2 min, p = 0.003) and rated equally on usability. All CLDQ and SF-36 domains reached the floor or ceiling while none were noted for Profile-29. These floor/ceiling effects were magnified when assessed in those with and without cirrhosis indicating improved depth of measurement by Profile-29. CONCLUSIONS Profile-29 is a valid, more efficient, well-received tool that provides improved depth of measurement when compared to SF-36 and CLDQ and, therefore, an ideal tool to measure general HRQOL in CLD.

Keywords: disease; liver disease; chronic liver; promis profile

Journal Title: Hepatology
Year Published: 2023

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