Abstract
Cirrhotic patients have an impaired health-related quality of life (HRQOL), which is usually analysed using static paper-pencil questionnaires. The Patient Reported Outcomes Measurement Information System (PROMIS) computerised adaptive testing (CAT) are flexible, freely available, noncopyrighted, HRQOL instruments with US-based norms across 11 domains. CAT presents five to seven questions/domain depending on the patient's response, from large validated question banks. This provides brevity and precision equivalent to the entire question bank. To evaluate PROMIS CAT tools against 'legacy instruments' for cirrhotics and their informal caregivers. A total of 200 subjects: 100 cirrhotics (70 men, 53% decompensated) and 100 caregivers were administered the PROMIS and legacy instruments [Sickness Impact Profile (SIP), Beck depression/anxiety inventories, Pittsburgh Sleep-Quality Index (PSQI) and Epworth Sleepiness scale (ESS)] concurrently. Both legacy and PROMIS results for patients were compared with caregivers and US norms. These were also compared between compensated and decompensated patients. Preference for SIP or PROMIS was inquired of a selected group (n = 70, 50% patients). Test - retest reliability was assessed in another group of 20 patients. Patients had significant impairment on all PROMIS domains apart from anger and anxiety compared with caregivers and US norms (P < 0.02 to <0.0001). Decompensated patients had significantly worse sleep, pain, social and physical function scores compared with compensated ones, similar to legacy instruments. There was a statistically significant correlation between PROMIS and their corresponding legacy instruments. The majority (71%) preferred PROMIS over SIP. PROMIS tools had significant test - retest reliability (ICC range 0.759-0.985) when administered 12 ± 6 days apart. PROMIS computerised adaptive testing tools had significant concurrent and discriminant validity, test - retest reliability and subject preference for assessing HRQOL in cirrhotic patients.
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