1. Self-Report of Functional Status and Quality of Life: Children Susan K. Parsons, MD, MRP Director, Center on Child and Family Outcomes, ICRHPS Tufts-NEMC Boston, Massachusetts

2. Why Measure Impact? Improved understanding of the impact of chronic GVHD will contribute to better supportive care. Information on disease impact can inform the evaluation of new therapies. Information on disease and treatment impact can inform decision making.

3. How Do We Measure Impact? Symptoms scales: –What symptoms are they having? Patient/proxy-reported functional status and quality of life: –Performance: What are they doing? –Health-related quality of life: How are they doing? Objective measures of physical performance: –Physical performance: What can they do? –End organ functional capacity (e.g., PFTs)

4. Self-Reported Outcome Measures Lee Chronic GVHD Symptom Scale Activities Scale for Kids (ASK) Child Health Ratings Inventories (CHRIs)

5. Activities Scale for Kids (ASK) Evaluates physical performance and ADL (e.g., personal care, dressing, eating) 30-item, self-report measure for children aged 5–15 years Younger children may complete with assistance from parents

6. Child Health Ratings Inventories (CHRIs) Health Related Quality of Life (HRQOL) instrument, originally developed for children with chronic disease Two self-report age-based versions: –School-aged: 5–2 years –Adolescent: 13–21 years Age-based modifications: –School-aged version: pictorial response scale; computer animated –Adolescent: text based; web-based tool under evaluation Parent proxy versions with parallel content

7. CHRIs Components 20-item general health module: CHRIs-General –Physical functioning –Role functioning –Emotional functioning –Energy 10-item transplant-specific module:CHRIs-HSCT –Hassles –Distress –Body image Reference period: past week Generate domain scores, scaled from 0-100 (worst- best)

8. CHRIs Administration Patients (8–18 years of age) and parents Parent only in the 5–7-year age group Children 8–12 complete CHRIs-General and CHRS-HSCT on laptop computer All other measures paper and pencil mode Assistance from research/clinical staff only