Desai, Archita P.Madathanapalli, AbhishekTang, QingOrman, Eric S.Lammert, CraigPatidar, Kavish R.Nephew, Lauren D.Ghabril, MarwanMonahan, Patrick O.Chalasani, Naga2024-02-012024-02-012023-12Desai, A. P., Madathanapalli, A., Tang, Q., Orman, E. S., Lammert, C., Patidar, K. R., Nephew, L. D., Ghabril, M., Monahan, P. O., & Chalasani, N. (2023). PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring quality of life in chronic liver disease. Hepatology, 78(6), 1788-1799. https://doi.org/10.1097/HEP.0000000000000480https://hdl.handle.net/1805/38279Background and Aims: The Patient-Reported Outcomes Measurement Information System (PROMIS) is increasingly used to measure health-related quality of life, 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 and Results: In all, 204 adult outpatients with CLD completed PROMIS-29, CLDQ, SF-36 and usability questionnaires. Mean scores were compared between groups, the correlation between domain scores was assessed, and floor/ceiling effects were calculated. Etiologies of CLD were NAFLD (44%), hepatitis C (16%), and alcohol (16%). Fifty-three percent 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. The presence of cirrhosis or complications was associated with worse scores in most PROMIS Profile-29 domains, indicating known group 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 the improved depth of measurement by Profile-29. Conclusions: Profile-29 is a valid, more efficient, well-received tool that provides an improved depth of measurement when compared to SF-36 and CLDQ and, therefore, an ideal tool to measure general health-related quality of life in CLD.en-USPublisher PolicyHealth related quality of lifePatient reported outcome measurementChronic liver diseasePROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring quality of life in chronic liver diseaseArticle