Development and Initial Validation of the Quality of life Evaluation in NF2-related Schwannomatosis Trials (QUEST) Assessment

Individuals with NF2-related schwannomatosis experience complex physical, emotional, and social symptoms that significantly impact their quality of life. Researchers developed a new specialized test called QUEST consisting of 21 items that measures how the disease negatively affects daily life over the past seven days. The test was validated in a sample of 174 people with NF2-schwannomatosis aged 15 years and older (67% women, 89% White individuals). Analyses showed that QUEST has a reliable four-factor structure with excellent internal consistency and strong test-retest reliability. The test demonstrated validity through relationships with other quality of life measures and distinguished individuals with different disease severity levels. QUEST is suitable for use as a measurement tool in clinical trials.