SelfReport of Functional Status and Quality of Life: Children

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
  515 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 52 years
• Adolescent 1321 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 moduleCHRIs-HSCT
• Hassles
• Distress
• Body image
• Reference period past week
• Generate domain scores, scaled from 0-100
  (worst-best)

8
CHRIs Administration

• Patients (818 years of age) and parents
• Parent only in the 57-year age group
• Children 812 complete CHRIs-General and
  CHRS-HSCT on laptop computer
• All other measures paper and pencil mode
• Assistance from research/clinical staff only

9
(No Transcript)
10
(No Transcript)
11
(No Transcript)
12
(No Transcript)