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