PRIMARY SCLEROSING CHOLANGITIS
PATIENT REGISTRY
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2026. Psychometric evaluation of PROMIS® fatigue and cognitive function short forms customized for adults living with primary sclerosing cholangitis
Plain-Language Summary
The Symptom Assessment Survey, conducted in the Registry, evaluated whether questionnaires customized for measuring fatigue and cognitive function (brain fog) in PSC worked as intended in a large sample of people living with PSC.
Analysis of responses showed that the fatigue and brain fog questionnaires are effective at consistently and reliably measuring these symptoms. Fatigue and brain fog are strongly associated with each other and with overall physical/mental health and functioning. Higher levels of fatigue and brain fog were found in women and in people with late stage PSC.
These results support the use of these new questionnaires to accurately capture fatigue and brain fog for people with PSC in clinical research.
Authors: Bryce B. Reeve, Li Lin, Brian Thorsen, Rachel Gomel, Christopher L. Bowlus & Donna M. Evon
Journal: Quality of Life Research. doi.org/10.1007/s11136-026-04398-3
Abstract:
Purpose: The study goal is to evaluate the psychometric properties of Patient-Reported Outcomes Measurement Information System® (PROMIS®) Fatigue and Cognitive Function Short Forms customized for use in adults with primary sclerosing cholangitis (PSC).
Methods: Participants completed a survey through the PSC Partners Patient Registry. The survey included the customized PROMIS short forms, the PROMIS Global Health scale, the PROMIS Sleep-related Impairment short form, and self-reported sociodemographic and clinical data. The factor structure was evaluated with confirmatory factor analysis, and reliability indices included coefficient alpha for internal consistency and intra-class correlations for test-retest reliability. Construct validity was evaluated based on the associations of the customized short forms with related patient-reported outcomes and the ability to differentiate between known groups.
Results: Participants included 287 adults, including 55% female, 93% White race, with a mean age of 52 years. Both Fatigue and Cognitive Function short forms were confirmed to be unidimensional, with internal consistency reliability of 0.98 and 0.97, and test-retest reliability of 0.92 and 0.89, respectively. The correlation between Fatigue and Cognitive Function scores was − 0.76, and had strong associations with physical health, mental health, sleep-related impairment, work productivity, and daily activities. Both customized short forms found statistically significantly worse fatigue and cognitive functioning in women, those with cirrhosis, and with a hepatic decompensation event in the past 12 months.
Conclusion: This study provided strong evidence for the construct validity and reliability of the PROMIS Fatigue and Cognitive Function short forms customized for adults with PSC. These PSC-specific outcome measures will benefit clinical research.