1. Objective Measures of Physical Performance in Chronic GVHD: Pediatrics David A. Jacobsohn, M.D. Kimberly E. Thormann, M.A., CPNP Children’s Memorial Hospital Chicago, IL

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

3. How Do We Measure Impact? Symptoms scales: –What problems are they having? Patient/proxy-reported outcomes –Performance: What are they doing? –Health-related quality of life: How are they doing? Functional capacity: –End organ function (e.g., PFTs) –Physical capacity: What can they do?

4. Functional Performance: Physical Objective measures –2 minute walk distance –Grip strength Clinician-reported –Lansky/Karnofsky Performance Status Self-reported –Activities Scale for Kids (ASK) –Child Health Ratings Inventories (CHRIs)

5. 2 Minute Walk Distance 50 foot gait path marked with tape at start and finish Stopwatch or watch with second hand to time 2 minutes Lap counter Tape measure or other device to measure the distance in feet covered in the final partial lap

6. Grip Strength—Hand Dynamometer Hand dynamometer selected based on hand size Evaluated with patient seated, shoulder adducted and in neutral position with elbow at 90 degrees Forearm neutral position Wrist 0–30 degrees extension Record three trials for dominant hand

7. Clinician-Reported Measures Lansky/Karnofsky Scale –Mixture of performance, health status, and impairment measures

8. ScoreLansky Performance Status Scale Definitions (circle from 0–100) Karnofsky Performance Status Scale Definitions (circle from 0–100) 100Fully active, normal Normal; no complaints; no evidence of disease 90Minor restrictions in physically strenuous activity Able to carry on normal activity; minor signs or symptoms of disease 80Active, but tires more quickly Normal activity with effort; some signs or symptoms of disease 70 Both greater restriction of and less time spent in play activity Cares for self; unable to carry on normal activity or to do active work 60 Up and around, but minimal active play; keeps busy with quieter activities Requires occasional assistance but is able to care for most personal needs 50 Gets dressed but lies around much of the day, no active play but able to participate in all quiet play and activities Requires considerable assistance and frequent medical care 40Mostly in bed; participates in quiet activities Disabled; requires special care and assistance 30In bed; needs assistance even for quiet play Severely disabled; hospital admission is indicated although death not imminent 20 Often sleeping; play entirely limited to very passive activities Very sick; hospital admission necessary; active supportive treatment necessary 10No play; does not get out of bed Moribund; fatal processes progressing rapidly 0Unresponsive Dead