Self-Report Measures of Functional Status and Quality of Life: AdultsSandra A. Mitchell, CRNP, M.Sc.N., AOCN

National Institutes of Health

Bethesda, MD

Self-Report Measures in Chronic GVHD Outcome Evaluation

• Self-report measures are increasingly a component of outcome evaluation.

• Decisions about approving new therapies often incorporate data about the effects of a therapy on function, symptoms, or quality of life.

• Improved understanding of the impact of chronic GVHD and its symptoms on self-reported health, functional status, and quality of life will contribute to better supportive care.

Self-Report Measures

• Lee Chronic GVHD Symptom Scale• Human Activity Profile (HAP)• Medical Outcomes Study Short Form 36 (MOS-

SF-36)• Functional Assessment of Cancer Therapy- Bone

Marrow Transplantation (FACT-BMT)

Human Activity Profile

• Collects information about what activities people are actually performing in their daily lives.

• Items reflect 94 oxygen-demanding activities of daily living that an individual currently performs unassisted.

• Activities are arranged in a hierarchical fashion beginning with getting in and out of bed, dressing, bathing, walking, using public transit, walking, performing a series of progressively more physically demanding household chores, bicycling, playing tennis, doing calisthenics, and ending with running or jogging 3 miles in 30 minutes or less.

Human Activity Profile

• For each activity– Still doing this activity– Have stopped doing this activity– Never did this activity

• Time frame for response: the last time they had an opportunity to perform the activity independently.

• Takes approximately 8 minutes to complete.

Medical Outcomes StudyShort Form-36 (SF-36v.2)

• Self-reported general health status, including physical and emotional health, limitations in activities as a result of health status.

• 36 items evaluate eight factors:– Physical functioning– Physical role functioning– Emotional role functioning– Social functioning– Bodily pain– Mental health– Vitality– General health

Medical Outcomes StudyShort Form-36 (SF-36v.2)

• Individual subscale scores can be calculated.• Two summary measures can be created through

aggregation of the subscales the Physical Component Summary (PCS) and the Mental Component Summary (MCS) items.

• Time frame for response based on: LAST FOUR WEEKS.

• Norm based scoring to compare with healthy age-matched population.

FACT-BMT

• Functional Assessment of Cancer Therapy (FACT-BMT)

• Measures disease or treatment specific quality of life, of which functioning is one component

• Platform of measure assesses health related quality of life in four domains:– Physical well being– Social/family well being– Emotional well being– Functional well being

FACT-BMT

• Additional module evaluates concerns common to patients who have undergone stem cell transplantation.

• Time frame of response based on: LAST SEVEN DAYS.