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Measuring Health-Related Quality of Life
Ron D. Hays, Ph.D. UCLA Department of Medicine UCLA School of Public Health RAND Health Program May 13, 2015, 8-9:50am (M218, ) 1

Measuring Health-Related Quality of Life

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Students Aryana Amoon, Epidemiology Shannon Dunlap, Social Welfare
Nancy Guerrero-Llamas, Comm. Health Sci. Aryun Hahm, Social Welfare Melissa Johnson, Nursing Neha Srivastava, Social Welfare Leslie Thomas, Community Health Sciences Lumo Tserling, Visiting student from Tibet

Students Aryana Amoon, Epidemiology Shannon Dunlap, Social Welfare

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U.S. Health Care Issues Access to care Costs of care
~ 50 million people without health insurance Costs of care Expenditures ~ $ 2.7 Trillion Effectiveness (quality) of care

U.S. Health Care Issues Access to care Costs of care

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How Do We Know If Care Is Effective?
Effective care maximizes probability of desired health outcomes Health outcome measures indicate whether care is effective Cost ↓ Effectiveness ↑

How Do We Know If Care Is Effective

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Signs and Symptoms of Disease
Indicators of Health Signs and Symptoms of Disease

Signs and Symptoms of Disease

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Signs and Symptoms of Disease
Indicators of Health Signs and Symptoms of Disease Functioning Well-Being

Signs and Symptoms of Disease

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Health-Related Quality of Life (HRQOL)
How the person FEELs (well-being) Emotional well-being Pain Energy What the person can DO (functioning) Self-care Role Social

Health-Related Quality of Life (HRQOL)

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Signs and Symptoms of Disease
Indicators of Health Signs and Symptoms of Disease Functioning Well-Being

Signs and Symptoms of Disease

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KDQOL Symptoms/Problems
During the past 4 weeks, to what extent were you bothered by each of the following? Soreness in your muscles? Chest pain? Itchy skin? Shortness of breath? Faintness or dizziness?

KDQOL Symptoms/Problems

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Health-Related Quality of Life (HRQOL)
Quality of environment Type of housing Level of income Social Support

Health-Related Quality of Life (HRQOL)

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Determinants of Health
Quality Of Care Health Characteristics Behavior Environment Chronic Conditions

Determinants of Health

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Patient-Reported Measures (PRMs)
Mediators Health behaviors (adherence) Health Care Process Reports about care (e.g., communication) Outcomes (PROs) Patient satisfaction with care Health-Related Quality of Life (HRQOL)

Patient-Reported Measures (PRMs)

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Type of HRQOL Scores Multiple Scores (Profile) Single Score
Generic (SF-36) How much of the time during the past 4 weeks have you been happy? (None of the time  All of the time) Targeted (“Disease specific”) KDQOL-36 My kidney disease interferes too much with my life. Single Score Preference-based (EQ-5D, HUI, SF-6D) Combinations of above

Type of HRQOL Scores Multiple Scores (Profile) Single Score

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HRQOL Scoring Options 0-100 possible range
T-scores (mean = 50, SD = 10) (10 * z-score) + 50 z-score = (score – mean)/SD 0 (dead) to 1 (perfect health)

HRQOL Scoring Options possible range

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HRQOL in HIV Compared to other
Chronic Illnesses and General Population T-score metric Hays et al. (2000), American Journal of Medicine

HRQOL in HIV Compared to other

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HRQOL in HIV Compared to other
Chronic Illnesses and General Population T-score metric Hays et al. (2000), American Journal of Medicine

HRQOL in HIV Compared to other

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HRQOL in HIV Compared to other
Chronic Illnesses and General Population T-score metric Hays et al. (2000), American Journal of Medicine

HRQOL in HIV Compared to other

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HRQOL in HIV Compared to other
Chronic Illnesses and General Population T-score metric Hays et al. (2000), American Journal of Medicine

HRQOL in HIV Compared to other

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Item Responses and Trait Levels
Person 1 Person 2 Person 3 Trait Continuum

Item Responses and Trait Levels

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In general, how would you rate your health?
Excellent Very Good Good Fair Poor

In general, how would you rate your health

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In general, how would you rate your health?
62 = Excellent 54 = Very Good 47 = Good 38 = Fair 29 = Poor Reliability = 0.52 (compared to 0.81 for 4-item scale).

In general, how would you rate your health

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Reliability Target for Use of Measures with Individuals
Reliability ranges from 0-1 0.90 or above is goal SE = SD (1- reliability)1/2 Reliability = 1 – (SE/10)2 Reliability = 0.90 when SE = 3.2 95% CI = true score +/ x SE T = z*

Reliability Target for Use of Measures with Individuals

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In the past 7 days … I was grouchy [1st question]
Never [39] Rarely [48] Sometimes [56] Often [64] Always [72] Estimated Anger = 56.1 SE = 5.7 (rel. = 0.68) Never: 39 Rarely: 48 Sometimes = 56 Often = 64 Always = 72

In the past 7 days … I was grouchy [1st question]

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In the past 7 days … I felt like I was ready to explode [2nd question]
Never Rarely Sometimes Often Always Estimated Anger = 51.9 SE = 4.8 (rel. = 0.77)

In the past 7 days … I felt like I was ready to explode [2nd question]

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In the past 7 days … I felt angry [3rd question]
Never Rarely Sometimes Often Always Estimated Anger = 50.5 SE = 3.9 (rel. = 0.85)

In the past 7 days … I felt angry [3rd question]

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In the past 7 days … I felt angrier than I thought I should [4th question] – Never Rarely Sometimes Often Always Estimated Anger = 48.8 SE = 3.6 (rel. = 0.87)

In the past 7 days … I felt angrier than I thought I should [4th question] - Never. Rarely. Sometimes.

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In the past 7 days … I felt annoyed [5th question]
Never Rarely Sometimes Often Always Estimated Anger = 50.1 SE = 3.2 (rel. = 0.90)

In the past 7 days … I felt annoyed [5th question]

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In the past 7 days … I made myself angry about something just by thinking about it. [6th question] Never Rarely Sometimes Often Always Estimated Anger = 50.2 SE = 2.8 (rel = 0.92)

In the past 7 days … I made myself angry about something just by thinking about it. [6th question] Never.

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PROMIS Physical Functioning vs. “Legacy” Measures
PROMIS Physical Functioning vs. Legacy Measures

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Is CAM Better than Standard Care (SC)?
Physical Health CAM > SC Mental Health SC > CAM

Is CAM Better than Standard Care (SC)

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Is Acupuncture Related to Worse HRQOL?
Subject Acupuncture General Health 1 No dead 2 No dead 3 No 50 4 No 60 5 No 70 6 Yes 40 7 Yes 50 8 Yes 50 9 Yes Yes 55 Group n HRQOL No Acupuncture Yes Acupuncture

Is Acupuncture Related to Worse HRQOL

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0.435

0.435

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HRQOL in SEER-Medicare Health Outcomes Study (n = 126,366)
Controlling for age, gender, race/ethnicity, education, income, and marital status.

HRQOL in SEER-Medicare Health Outcomes Study (n = 126,366)

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Physical Functioning and Emotional Well-Being at Baseline for 54 Patients at UCLA-Center for East West Medicine EWB Physical MS = multiple sclerois; ESRD = end-stage renal disease; GERD = gastroesophageal reflux disease. 37

Physical Functioning and Emotional Well-Being at Baseline for 54 Patients at UCLA-Center for East West Medicine

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Significant Improvement in all but 1 of SF-36 Scales (Change is in T-score metric)
t-test prob. PF-10 1.7 2.38 .0208 RP-4 4.1 3.81 .0004 BP-2 3.6 2.59 .0125 GH-5 2.4 2.86 .0061 EN-4 5.1 4.33 .0001 SF-2 4.7 3.51 .0009 RE-3 1.5 0.96 .3400 EWB-5 4.3 3.20 .0023 PCS 2.8 3.23 .0021 MCS 3.9 2.82 .0067

Significant Improvement in all but 1 of SF-36 Scales (Change is in T-score metric)

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Effect Size (Follow-up – Baseline)/ SDbaseline Cohen’s Rule of Thumb:
ES = Small ES = Medium ES = Large

Effect Size (Follow-up – Baseline)/ SDbaseline Cohen’s Rule of Thumb:

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Effect Sizes for Changes in SF-36 Scores
0.53 0.13 0.35 0.35 0.21 0.36 0.11 0.41 0.24 0.30 PFI = Physical Functioning; Role-P = Role-Physical; Pain = Bodily Pain; Gen H=General Health; Energy = Energy/Fatigue; Social = Social Functioning; Role-E = Role-Emotional; EWB = Emotional Well-being; PCS = Physical Component Summary; MCS =Mental Component Summary.

Effect Sizes for Changes in SF-36 Scores

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Defining a Responder: Reliable Change Index (RCI)
Note: SDbl = standard deviation at baseline rxx = reliability

Defining a Responder: Reliable Change Index (RCI)

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Amount of Change in Observed Score Needed To be Statistically Significant
Note: SDbl = standard deviation at baseline and rxx = reliability

Amount of Change in Observed Score Needed To be Statistically Significant

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Amount of Change in Observed Score Needed for Significant Individual Change
Scale RCI Effect size Cronbach’s alpha PF-10 8.4 0.67 0.94 RP-4 0.72 0.93 BP-2 10.4 1.01 0.87 GH-5 13.0 1.13 0.83 EN-4 12.8 1.33 0.77 SF-2 13.8 1.07 0.85 RE-3 9.7 0.71 EWB-5 13.4 1.26 0.79 PCS 7.1 0.62 MCS 0.73 43

Amount of Change in Observed Score Needed for Significant Individual Change

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Amount of Change Needed for Significant Individual Change
Effect Size 1.33 0.67 0.72 1.01 1.13 1.07 0.71 1.26 0.62 0.73 PFI = Physical Functioning; Role-P = Role-Physical; Pain = Bodily Pain; Gen H=General Health; Energy = Energy/Fatigue; Social = Social Functioning; Role-E = Role-Emotional; EWB = Emotional Well-being; PCS = Physical Component Summary; MCS =Mental Component Summary.

Amount of Change Needed for Significant Individual Change

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7-31% of People in Sample Improve Significantly
% Improving % Declining Difference PF-10 13% 2% + 11% RP-4 31% + 29% BP-2 22% 7% + 15% GH-5 0% + 7% EN-4 9% SF-2 17% 4% + 13% RE-3 15% EWB-5 19% PCS 24% + 17% MCS 11%

7-31% of People in Sample Improve Significantly

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Thank you. http://gim.med.ucla.edu/FacultyPages/Hays/
Powerpoint file at: 46

Thank you.

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