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Measuring Quality of Life in Rare Pediatric Disease Using Anchoring Vignettes (303451)
*Christina Kelsey Zigler, University of PittsburghHealth-related quality of life (QoL) is an important consideration in patient care and symptom management. Recently, disease specific QoL measures have increased in popularity because they tend to be more sensitive to specific disease characteristics (Patrick & Deyo, 1989). For rare diseases, appropriate QoL measures have even more special considerations because of the low sample size available for research (Price et al., 2009). Localized scleroderma (LS) is an autoimmune, dermatologic condition that causes progressive fibrosis and sclerosis of the skin and underlying tissues. There are currently limited outcome measures in localized scleroderma as well as no expert consensus on which monitoring tools to use, both of which have impacted the development of clinical trials (Hawley et al., 2014). Anchoring vignettes have been implemented as a solution to increase measurement precision in QoL through correcting for personal differences in ranking of Likert scales (King, Murray, Salomon, & Tandon, 2004) but have not yet been studied in children. This study aims to create and validate a new survey that adequately captures QoL in pediatric LS patients using anchoring vignettes.