1. Profile Health-Related Quality of Life Measures
Ron D. Hays, Ph.D.
January 12, 2015 (9:00-11:50 am)
HPM 214

2. Where we are now in HPM214 Introduction Profile Measures (SF-36 due) 
Preference-Based Measures
Designing Measures
Evaluating Measures
PROMIS/IRT/Internet Panels
Reviews of Manuscripts
Course Review (Cognitive interviews due)
Final Exam (3/16/15)

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

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

6. Functioning and Well-Being
Functioning (what you can do)
Self-care
Role
Social
Well-being (how you feel)
Pain
Energy
Depression
Positive affect

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

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

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

10. Does your health now limit you in walking more than a mile?
(If so, how much?)
Yes, limited a lot
Yes, limited a little
No, not limited at all

11. How much of the time during the past 4 weeks have you been happy?
None of the time
A little of the time
Some of the time
Most of the time
All of the time

12. Types of HRQOL Measures
- Profile: Targeted vs. Generic
- Preference

13. Targeted HRQOL Measures
Designed to be relevant to particular group.
Sensitive to small, but clinically-important
changes.
More familiar and actionable for clinicians.
Enhance respondent cooperation.

14. Kidney-Disease Targeted Items
During the last 30 days, to what extent were you bothered by cramps during dialysis?
Not at all bothered
Somewhat bothered
Moderately bothered
Very much bothered
Extremely bothered

15. IBS-Targeted Item
During the last 4 weeks, how often were you angry about your irritable bowel syndrome?
None of the time
A little of the time
Some of the time
Most of the time
All of the time

16. Litwin et al. Study of HRQOL in Men Treated for Localized Prostate Cancer
Cross-sectional study of 214 men with prostate cancer
- 98 radical prostatectomy
- 56 primary pelvic irradiation
60 observation alone
273 age/zip matched pts. without cancer
JAMA, 1995

17. Sexual, Urinary and Bowel Function

18. SF-36 Generic Profile Measure
Physical functioning (10 items)
Role limitations/physical (4 items)
Role limitations/emotional (3 items)
Social functioning (2 items)
Emotional well-being (5 items)
Energy/fatigue (4 items)
Pain (2 items)
General health perceptions (5 items)

19. Scoring HRQOL Profile Scales
Average or sum all items in the same scale.
Transform average or sum to
0 (worse) to 100 (best) possible range
z-score (mean = 0, SD = 1)
T-score (mean = 50, SD = 10)

20. Formula for Transforming Scores
(original score - minimum) *100
X =
(maximum - minimum) Y
= target mean + (target SD * Zx)
ZX =
SDX
(X - X)

22. Example Uses of Generic HRQOL Measures
Cross-Sectional
Comparison of Same Disease in Different Samples
Profiles of Different Diseases
Longitudinal
Profiles of Different Disease
Identifying Antecedents of HRQOL

23. HRQOL of Patients in ACTG versus Public Hospital Samples
Adjusted Scale Scores (Cunningham et al., 1995)
Health
Index
Current
Health
Physical
Function
Energy/
Fatigue
Low Pain
Emotional
Well-being
Social
Function
Role
Function
Cognitive
Function
Trial
Non-trial

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

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

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

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

28. Physical Functioning in Relation to Time Spent Exercising 2-years Before84 82 80 78 76 74 72 70 68 66 64 62
Hypertension
Diabetes
0-100 range
Current Depression
Low
High
Total Time Spent Exercising
Stewart, A.L., Hays, R.D., Wells, K.B., Rogers, W.H., Spritzer, K.L., & Greenfield, S. (1994). Long-term functioning and well-being outcomes associated with physical activity and exercise in patients with chronic conditions in the Medical Outcomes Study. Journal of Clinical Epidemiology, 47,

29. Physical Functioning in Relation to Time Spent Exercising 2-years Before84 82 80 78 76 74 72 70 68 66 64 62
Hypertension
Diabetes
0-100 range
Current Depression
Low
High
Total Time Spent Exercising
Stewart, A.L., Hays, R.D., Wells, K.B., Rogers, W.H., Spritzer, K.L., & Greenfield, S. (1994). Long-term functioning and well-being outcomes associated with physical activity and exercise in patients with chronic conditions in the Medical Outcomes Study. Journal of Clinical Epidemiology, 47,

30. Role functionphysical
Physical Health
Physical Health
Physical function
Role functionphysical
Pain
General Health

31. Role function-emotional
Mental Health
Mental Health
Emotional Well-Being
Role function-emotional
Energy
Social function

32. SF-36 PCS and MCS
PCS_z = (PF_Z * 0.42) + (RP_Z * 0.35) (BP_Z * 0.32) + (GH_Z * 0.25) (EF_Z * 0.03) + (SF_Z * -.01) (RE_Z * -.19) + (EW_Z * -.22)
MCS_z = (PF_Z * -.23) + (RP_Z * -.12) (BP_Z * -.10) + (GH_Z * -.02) (EF_Z * 0.24) + (SF_Z * 0.27) (RE_Z * 0.43) + (EW_Z * 0.49)
PCS = (PCS_z*10) + 50
MCS = (MCS_z*10) + 50

33. Treatment Impact on Physical Health

34. Treatment Impact on Mental Health

35. Summary scores for SF-36 derived from uncorrelated (orthogonal) two factor (physical and mental health) solution, producing negative weights in scoring.
PCS-z = (PF-z*.42) + (RP-z*.35) + (BP-z*.32) +
(GH-z*.25) + (EN-z*.03) + (SF-z*-.01) +
(RE-z*-.19) + (MH-z*-.22)
MCS-z = (PF-z*-.23) + (RP-z*-.12) + (BP-z*-.10) +
(GH-z*-.12) + (EN-z*.24) + (SF-z*.27) +
(RE-z*.43) + (MH-z*.48)
Weights

36. Debate About Summary Scores
Taft, C., Karlsson, J., & Sullivan, M. (2001). Do SF-36 component score accurately summarize subscale scores? Quality of Life Research, 10,
Ware, J. E., & Kosinski, M. (2001). Interpreting SF-36 summary health measures: A response. Quality of Life Research, 10,
Taft, C., Karlsson, J., & Sullivan, M. (2001). Reply to Drs Ware and Kosinski. Quality of Life Research, 10,

37. Initiating Antidepressant Tx
536 Primary Care Patients
Initiating Antidepressant Tx
3-month improvements in physical functioning, role—physical, pain, and general health perceptions ranging from 0.28 to 0.49 SDs.
Yet SF-36 PCS did not improve.
Simon et al. (Med Care, 1998)

38. Role function-physical
Four scales improve SD, but
PCS did not change
Physical Health
Physical function
Role function-physical
Pain
General Health

39. n = 194 with Multiple Sclerosis
Lower scores than general population on
Emotional well-being ( 0.3 SD)
Role—emotional ( 0.7 SD)
Energy (1.0 SD)
Social functioning (1.0 SD)
Yet SF-36 MCS was only 0.2 SD lower.
Nortvedt et al. (Med Care, 2000)

40. Role function-emotional
Four scales are lower by SD,
but MCS only 0.2 SD lower
Mental Health
Emotional Well-Being
Role function-emotional
Energy
Social function

41. Farivar et al. alternative weights
PCS_z = (PF_z * .20) + (RP_z * .31) + (BP_z * .23) +
(GH_z * .20) + (EF_z * .13) + (SF_z * .11) +
(RE_z * .03) + (EW_z * -.03)
MCS_z = (PF_z * -.02) + (RP_z * .03) + (BP_z * .04) +
(GH_z * .10) + (EF_z * .29) + (SF_z * .14) +
(RE_z * .20) + (EW_z * .35)
Farivar, S. S., Cunningham, W. E., & Hays, R. D. (2007). Correlated physical and mental health summary scores
for the SF-36 and SF-12 health survey, V. 1. Health and Quality of Life Outcomes, 5: 54. [PMCID: PMC ]

42. Is Complementary and Alternative Medicine
(CAM) Better than Standard Care (SC)?
CAM SC
CAM SC
Physical
Health
CAM > SC
Mental
Health
SC > CAM

43. Does Taking Medicine for HIV Lead to Worse HRQOL?
Subject Antiretroviral s HRQOL (0-100)
1 No dead
2 No dead
3 No 50
4 No 75
5 No 100
6 Yes 0
7 Yes 25
8 Yes 50
9 Yes 75
Yes 100
Group n HRQOL
No Antiretroviral
Yes Antiretoviral

45. Cost-Effectiveness of Health Care
Effectiveness (“Utility”) ↑

46. HRQOL Measurement Options
Multiple Scores (Profile)
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

47. Are self-reports reliable?
Extent to which you get the same score on repeated assessments

48. Range of reliability estimates
for blood pressure
for multi-item self-report scales
Hahn, E. A., Cella, D., et al. (2007). Precision of health-related
quality-of-life data compared with other clinical measures.
Mayo Clin Proceedings, 82 (10),

49. Are self-reports valid?
Validity—score represents what you are trying
to measure rather than something else

50. Hospitalized Patients Report Worse General Health (n = 20,158)
% Hospitalized in past 3 months
In general, how would you rate your health?
Kravitz, R. et al. (1992). Differences in the mix of patients among medical specialties and systems of care: Results from the Medical Outcomes Study. JAMA, 267,

51. Self-Reports of Physical Health Predict Five-Year Mortality%
Dead
(n=676)
(n=754)
(n=1181)
(n=609)
SF-36 Physical Health Component Score (PCS)—T score
Ware et al. (1994). SF-36 Physical and Mental Health Summary Scales: A User’s Manual.

52. Mark D. Sprenke et al. (Chest, 2004)
“The Veterans Short Form 36 Questionnaire is predictive of mortality and health-care utilization in a population of veterans with a self-reported diagnosis of asthma or COPD”

53. Cognitive Interview Assignment
Conduct 5 cognitive interviews with a self-administered health-related quality of life survey instrument
2-3 page written summary

54. MOS-Derived Health Profile Instruments
LF-116
SF-56
ESI-55
SF-38
SF-36
SF-30
SF-20
SF-12
Physical Health
Physical functioning 10 6 2
Role limitations - physical 7 5 4
Pain 11 1
Mental Health
Psychological distress 22 3
Psychological Well-being
Role limitations- emotional
Cognitive Functioning
Loneliness 8
Hopefulness
Quality of Life
Health in General
Energy/fatigue
Sleep problems 9
Role limitations
Social functioning
Health perceptions
Health distress

55. Criteria for Choosing Measures
Domains of health
Choice of domains affects the treatment
effects observed
Range of health
Range of measure affects the coverage of the spectrum of performance and change in health status
Reliability
Unreliable measures yield inconsistent, uninterpretable results
Validity
Valid measures provide information about the dysfunction of interest. Includes sensitivity or responsiveness
Practical considerations
The burden of administration influences the responses from patients and providers and amount of information obtained

56. Questions?
Contact Information:
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Powerpoint file posted at: 56