Course Overview

Profile Health-Related Qualityof Life MeasuresRon D. Hays, Ph.D. January 12, 2015 (9:00-11:50 am)HPM 214 http://hpm214.med.ucla.edu/

1Where we are now in HPM214IntroductionProfile Measures (SF-36 due) Preference-Based MeasuresDesigning MeasuresEvaluating Measures PROMIS/IRT/Internet PanelsReviews of ManuscriptsCourse Review (Cognitive interviews due)Final Exam (3/16/15)

23http://www.kidney.org/professionals/CFCs.cfmDeterminants of Health4HealthBehaviorEnvironmentCharacteristicsQualityOf CareChronic ConditionsIndicators of Health5Signs and Symptoms of DiseaseFunctioningWell-BeingFunctioning and Well-BeingFunctioning (what you can do)Self-careRoleSocial

Well-being (how you feel)PainEnergyDepressionPositive affect6Indicators of Health7Signs and Symptoms of DiseaseFunctioningWell-Being8Health-Related Quality of Life (HRQOL)

Quality of environmentType of housingLevel of incomeSocial Support89In general, how would you rate your health?ExcellentVery GoodGood FairPoor

910Does your health now limit you inwalking more than a mile?(If so, how much?)

Yes, limited a lotYes, limited a littleNo, not limited at all

1011How much of the time during the past 4 weeks have you been happy?None of the timeA little of the timeSome of the timeMost of the timeAll of the time

1112- Profile: Targeted vs. Generic - Preference

Types of HRQOL Measures1213Targeted 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.1314Kidney-Disease Targeted ItemsDuring the last 30 days, to what extent were you bothered by cramps during dialysis? Not at all botheredSomewhat botheredModerately botheredVery much botheredExtremely bothered

14IBS-Targeted ItemDuring the last 4 weeks, how often were you angry about your irritable bowel syndrome?None of the timeA little of the timeSome of the timeMost of the timeAll of the time 1516Cross-sectional study of 214 men with prostate cancer- 98 radical prostatectomy- 56 primary pelvic irradiation 60 observation alone273 age/zip matched pts. without cancerJAMA, 1995Litwin et al. Study of HRQOL in Men Treated for Localized Prostate Cancer

1617Sexual, Urinary and Bowel Function

1718SF-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)1819Scoring HRQOL Profile ScalesAverage or sum all items in the same scale.Transform average or sum to0 (worse) to 100 (best) possible rangez-score (mean = 0, SD = 1)T-score (mean = 50, SD = 10)

1920 X =(original score - minimum) *100(maximum - minimum)Y= target mean + (target SD * Zx)

ZX =SDX(X - X)Formula for Transforming Scores2021

2122Example Uses of Generic HRQOL MeasuresCross-SectionalComparison of Same Disease in Different SamplesProfiles of Different Diseases

LongitudinalProfiles of Different DiseaseIdentifying Antecedents of HRQOL

2223 HRQOL of Patients in ACTG versus Public Hospital Samples

Adjusted Scale Scores (Cunningham et al., 1995)Health IndexCurrentHealth PhysicalFunction Energy/Fatigue Low Pain EmotionalWell-being SocialFunction RoleFunction CognitiveFunction Trial Non-trial 2324HRQOL in HIV Compared to otherChronic Illnesses and General Population

Hays et al. (2000), American Journal of MedicineT-score metric2425HRQOL in HIV Compared to otherChronic Illnesses and General Population

Hays et al. (2000), American Journal of MedicineT-score metric2526HRQOL in HIV Compared to otherChronic Illnesses and General Population

Hays et al. (2000), American Journal of MedicineT-score metric2627HRQOL in HIV Compared to otherChronic Illnesses and General Population

Hays et al. (2000), American Journal of MedicineT-score metric2728HypertensionDiabetesCurrent DepressionStewart, A.L., Hays, R.D., Wells, K.B., Rogers, W.H., Spritzer, K.L., & Greenfield, S. (1994). Long-termfunctioning and well-being outcomes associated with physical activity and exercise in patients withchronic conditions in the Medical Outcomes Study. Journal of Clinical Epidemiology, 47, 719-730.Physical Functioning in Relation to TimeSpent Exercising 2-years Before

LowHighTotal Time Spent Exercising848280787674727068666462

0-100 range2829HypertensionDiabetesCurrent DepressionStewart, A.L., Hays, R.D., Wells, K.B., Rogers, W.H., Spritzer, K.L., & Greenfield, S. (1994). Long-termfunctioning and well-being outcomes associated with physical activity and exercise in patients withchronic conditions in the Medical Outcomes Study. Journal of Clinical Epidemiology, 47, 719-730.Physical Functioning in Relation to TimeSpent Exercising 2-years Before

LowHighTotal Time Spent Exercising848280787674727068666462

0-100 range2930Physical HealthPhysical functionRole functionphysicalPainGeneral HealthPhysical Health3031Mental HealthEmotional Well-BeingRole function-emotionalEnergySocial functionMental Health3132SF-36 PCS and MCSPCS_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) + 50MCS = (MCS_z*10) + 50

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Treatment Impact on Physical Health3334

Treatment Impact on Mental Health3435WeightsSummary 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) 3536Debate About Summary ScoresTaft, C., Karlsson, J., & Sullivan, M. (2001). Do SF-36 component score accurately summarize subscale scores? Quality of Life Research, 10, 395-404.Ware, J. E., & Kosinski, M. (2001). Interpreting SF-36 summary health measures: A response. Quality of Life Research, 10, 405-413.Taft, C., Karlsson, J., & Sullivan, M. (2001). Reply to Drs Ware and Kosinski. Quality of Life Research, 10, 415-420.

3637536 Primary Care Patients Initiating Antidepressant Tx3-month improvements in physical functioning, rolephysical, 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)

3738Physical HealthPhysical functionRole function-physicalPainGeneral HealthFour scales improve 0.28-0.49 SD, but PCS did not change3839n = 194 with Multiple SclerosisLower scores than general population on Emotional well-being ( 0.3 SD)Roleemotional ( 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)3940Mental HealthEmotional Well-BeingRole function-emotionalEnergySocial functionFour scales are lower by 0.3-1.0 SD, but MCS only 0.2 SD lower4041Farivar 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: PMC2065865]4142Is Complementary and Alternative Medicine (CAM) Better than Standard Care (SC)?

CAMSCCAMSCPhysicalHealth

CAM > SCMental Health

SC > CAM4243Does Taking Medicine for HIV Lead to Worse HRQOL?1 Nodead2 Nodead 3 No50 4 No75 5 No100 6 Yes0 7 Yes25 8 Yes50 9 Yes75 10 Yes100 Subject Antiretrovirals HRQOL (0-100)No Antiretroviral375Yes Antiretoviral550Group n HRQOL 4344http://www.ukmi.nhs.uk/Research/pharma_res.asp

4445 Cost-Effectiveness of Health CareCost

Effectiveness (Utility) 45HRQOL Measurement OptionsMultiple 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-36My kidney disease interferes too much with my life.Single ScorePreference-based (EQ-5D, HUI, SF-6D)Combinations of above4647Are self-reports reliable?Extent to which you get the same score on repeated assessments4748Range of reliability estimates0.80-0.90 for blood pressure 0.70-0.90 for multi-item self-report scales

Hahn, E. A., Cella, D., et al. (2007). Precision of health-relatedquality-of-life data compared with other clinical measures. Mayo Clin Proceedings, 82 (10), 1244-1254.4849Are self-reports valid?Validityscore represents what you are trying to measure rather than something else

49Hospitalized Patients Report Worse General Health (n = 20,158)

% Hospitalized in past 3 monthsKravitz, 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, 1617-1623.In general, how would you rate your health?5051

% Dead(n=676) (n=754) (n=1181) (n=609)SF-36 Physical Health Component Score (PCS)T scoreWare et al. (1994). SF-36 Physical and Mental Health Summary Scales: A Users Manual.Self-Reports of Physical Health Predict Five-Year Mortality

5152Mark 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

52Cognitive Interview AssignmentConduct 5 cognitive interviews with a self-administered health-related quality of life survey instrument2-3 page written summary

http://www.chime.ucla.edu/qualitativemethods.htm

53MOS-Derived Health Profile InstrumentsLF-116SF-56ESI-55SF-38SF-36SF-30SF-20SF-12Physical HealthPhysical functioning10610610662Role limitations - physical70504002Pain112212111Mental HealthPsychological distress223333331Psychological Well-being102222221Role limitations- emotional30503002Cognitive Functioning66560400Loneliness08000000Hopefulness07000000 Quality of Life07270100Health in GeneralEnergy/fatigue55444401Sleep problems90000000Role limitations22020220Social functioning42212111Health perceptions95955151Health distress60000400Criteria for Choosing MeasuresDomains of healthChoice of domains affects the treatment effects observedRange of healthRange of measure affects the coverage of the spectrum of performance and change in health statusReliabilityUnreliable measures yield inconsistent, uninterpretable resultsValidityValid measures provide information about the dysfunction of interest. Includes sensitivity or responsivenessPractical considerationsThe burden of administration influences the responses from patients and providers and amount of information obtained56 Questions?

Contact Information:drhays@ucla.edu (310-794-2294)

Powerpoint file posted at: http://hpm214.med.ucla.edu/

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