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