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Measuring Quality of Life in Rare Pediatric Disease Using Anchoring Vignettes (303214)

Kaveh Ardelan, Northwestern University 
Suzanne Lane, University of Pittsburgh 
Clement Stone, University of Pittsburgh 
Kathryn S Torok, Children's Hospital of Pittsburgh of UPMC 
Lan Yu, University of Pittsburgh 
*Christina Kelsey Zigler, University of Pittsburgh 

Keywords: quality of life, measurement, anchoring vignettes, patient care

Health-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.