National Institutes of Health Bethesda, MD Self-Report Measures in Chronic Illness Outcome Evaluation • Self-report measures are increasingly a component of outcome evaluation. • Decisions about approving new therapies often incorporate data about the effects of a therapy on symptoms, function or quality of life as primary or secondary outcome measures. • Improved understanding of the impact of chronic GVHD and its symptoms on self-reported health, functional status and quality of life, will contribute to better supportive care. Lee Chronic GVHD Symptom Scale • Instrument developed and psychometrically evaluated by Stephanie J. Lee, M.D., M.P.H. and colleagues1. • Assesses the degree to which respondents are bothered by each of 30 common chronic GVHD symptoms: – Skin – Eyes and Mouth – Breathing – Eating and Digestion – Arthralgias/Myalgias/Limitations in ROM – Fatigue and Asthenia – Emotional Distress 1. Lee, S., Cook, E., Soiffer, R., & Antin, J. (2002). Development and validation of a scale to measure symptoms of chronic graft-versus-host disease. Biol Blood Marrow Transplant, 8(8), 444-452. Lee Chronic GVHD Symptom Scale • Responses are captured on a five-point Likert scale: – “no symptoms or not bothered at all” – “slightly bothered” – “moderately bothered” – “quite a bit bothered” – “extremely bothered” • Time frame of response based on: LAST FOUR WEEKS. • Scores normalized on a 0–100 point scale, and summary and subscale scores can be created. • Higher scores indicate more bothersome symptoms. • Takes about five minutes to complete. Lee Chronic GVHD Symptom Scale: Modifications for Pediatrics • Validity evidence supports Lee Chronic GVHD Symptom Scale as a self-report measure for adults.1 • Adolescents 13 years and older: independent self-report. • Children 8-12 years: measure completed with assistance from health care provider. 1. Lee, S., Cook, E., Soiffer, R., & Antin, J. (2002). Development and validation of a scale to measure symptoms of chronic graft-versus-host disease. Biol Blood Marrow Transplant, 8(8), 444-452.