Agreement between Proxy and Patient Reports of HRQoL using the EQ-5D:

Transcription

1 Agreement between Proxy and Patient Reports of HRQoL using the EQ-5D: The interaction effect of perspective, timing and patient cognition Steven McPhail,2 Elaine Beller,2 Terry Haines,2 The University of Queensland 2 Princess Alexandra Hospital Health-Related Quality of Life Domains of Health + Influences Physical Psychological Social Experiences Expectations Perceptions Environment

2 Measuring HRQoL Usually measured via patient self-report Generic instruments Disease specific instruments Problematic in some populations Poor cognition Communication difficulty Proxy reporting proposed as an alternative to self-report where a valid self-report is not viable Proxy reporting Various investigations of agreement Mixed results -5 Two perspectives of Proxy reports are possible 6 Proxy-patient Proxy responds as they believe patient would Proxy-proxy Proxy s responds with own perspective Most prior investigations not clear which, if any consistent perspective has been used by proxies No previous investigations of both perspectives

3 Three things considered Perspective proxy-proxy versus proxy-patient Timing (exposure to patient) Admission assessment versus discharge assessment Basic cognition Intact (MMSE>23) versus not intact (MMSE <23) Method Design: Prospective cohort investigations of inter-rater agreement Participants and Settings: Patients admitted to the Geriatric Assessment and Rehabilitation Unit Their treating physiotherapist Outcome Measure EQ-5D

4 Procedure Perspective A (Proxy-Patient) Patients admitted to rehabilitation unit July January Both Proxy Types (A & B) January Perspective B (Proxy-Proxy) Patients admitted to rehabilitation unit January June Admission Assessment Proxy-Patient & Patient Self Report Total pairs n = 69 Patients in both A & B n=3 Proxy-Proxy & Patient Self Report Total pairs n = 33 Discharge assessment not complete Total n = 22 Usual care during admission Usual care during admission Discharge Assessment Proxy-Patient & Patient Self Report Total pairs n = 5 Patients in both A & B n=3 Proxy-Proxy & Patient Self Report Total pairs n = 3 Data Analysis 5 complete datasets with proxy reports from Perspective A 3 complete datasets with proxy reports from Perspective B Results Complete datasets Proxy-patient = 5 (proxies n= 23) Proxy-proxy = 3 (proxies n= 2) 22 Incomplete datasets unexpected transfer/discharge from ward (8) patient self discharged against medical advice without reassessment (6), death before discharge assessment (5), patient refused assessment (2), English translator not available ()

5 Results - Demographics Proxy-Patient (Perspective-A) n=5 Proxy-Proxy (Perspective-B) n=3 Median Age (IQR) 79 (69-85) 77 (67-84) Median Length of stay (IQR) 42 (3-69) 4 (22-67) Basic cognition group median MMSE (IQR) Intact group (MMSE >23) Not Intact group (MMSE <23) 28 (27-3) n=99 2 (6-22) n=5 28 (26-3) n=78 2 (6-22) n=52 Both groups combined 27 (2-3) 25 (2-29) Agreement (kappa) Basic Cognition Mobility kappa (95%CI) Personal Care kappa (95%CI) Usual Activities kappa (95%CI) Pain / Discomfort kappa (95%CI) Anxiety / Depression kappa (95%CI) Intact n=99 (.73,.95) (.66,.87) (.62,.86) (.57,.8) (.62,.86) Proxy Patient (Phase-A) Admission Discharge Not intact n=5 Combined n=5 Intact n=99 Not intact n=5.53 (.26,.78).75 (.63,.86).9 (.8,.98).84 (.7,.).52 (.33,.7).69 (.58,.78).85 (.73,.94).84 (.68,.96).76 (.56,.9).76 (.65,.85).78 (.65,.89).88 (.76,.97).6 (.4,.77).66 (.55,.76).93 (.85,.98).95 (.82,.).47 (.24,.68).65 (.54,.76).76 (.56,.9).78 (.55,.95) Combined n=5 (.8,.95) (.76,.92) (.74,.9) (.87,.98) (.63,.88) Intact n=78.76 (.57,.9).55 (.36,.72).57 (.4,.74).8 (.67,.92).62 (.44,.77) Proxy Proxy (Phase-B) Admission Discharge Not intact n=52 Combined n= 3 Intact n=78 Not intact n=52 Combined n= 3.4 (.9,.6).59 (.45,.72).77 (.62,.9).42 (.26,.63).62 (.5,.74).23 (.8,.4).39 (.26,.52).68 (.49,.85).29 (.4,.49).5 (.38,.63).32 (.5,.5).45 (.33,.57).67 (.49,.82).3 (.5,.5).49 (.37,.6).6 (.42,.77).72 (.6,.8).72 (.57,.86).8 (.62,.97).76 (.64,.86).52 (.29,.72).58 (.43,.7).95.82,.).67 (.44,.87).8 (.68,.92)

6 Domain Kappa scores Admission Discharge Proxy Patient Kappa Mobility Personal Care Usual Activities Proxy Proxy Kappa < < Pain Discomfort Anxiety Depression Cognition (MMSE) Group Cognition (MMSE) Group Proxy-Patient Poor Cognition Admission % CI

7 Proxy-Patient Poor Cognition Discharge Proxy-Patient Good Cognition Admission

8 Proxy-Patient Good Cognition Discharge Proxy-Proxy Poor Cognition Admission % CI Difference not

9 Proxy-Proxy Poor Cognition Discharge Proxy-Proxy Good Cognition Admission

10 Proxy-Proxy Good Cognition Discharge Discussion Generally kappa values were quite high compared with previous investigations Interaction of all three factors under consideration Perspective Cognition Timing Necessary to consider perspective when using proxy reports Important to clearly instruct proxy reporters Describe which perspective used Which perspective?proxy-proxy for poor cognition No gold standard!

11 Discussion Limitations One population of patients and proxies All patients capable of self report Future research Other populations of patients and proxies Criterion related validity References. Bryan, S, Hardyman, W, Bentham, P, et al., Proxy completion of EQ-5D in patients with dementia. Qual Life Res. 25; 4(): Coucill, W, Bryan, S, Bentham, P, et al., EQ-5D in patients with dementia: an investigation of inter-rater agreement. Med Care. 2; 39(8): Dorman, PJ, Waddell, F, Slattery, J, et al., Are proxy assessments of health status after stroke with the EuroQol questionnaire feasible, accurate, and unbiased? Stroke. 997; 28(): Hickey, A, Barker, M, McGee, H, et al., Measuring health-related quality of life in older patient populations: a review of current approaches. Pharmacoeconomics. 25; 23(): Pickard, AS, Johnson, JA, Feeny, DH, et al., Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and Health Utilities Index. Stroke. 24; 35(2): Tamim, H, McCusker, J and Dendukuri, N, Proxy reporting of quality of life using the EQ-5D. Med Care. 22; 4(2): Williams, LS, Bakas, T, Brizendine, E, et al., How valid are family proxy assessments of stroke patients' health-related quality of life? Stroke. 26; 37(8): Sitoh, YY, Lau, TC, Zochling, J, et al., Proxy assessment of health-related quality of life in the frail elderly. Age Ageing. 23; 32(4):

12 9. Sprangers, MA and Aaronson, NK, The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol. 992; 45(7): Andresen, EM, Vahle, VJ and Lollar, D, Proxy reliability: health-related quality of life (HRQoL) measures for people with disability. Qual Life Res. 2; (7): Rothman, ML, Hedrick, SC, Bulcroft, KA, et al., The validity of proxy-generated scores as measures of patient health status. Med Care. 99; 29(2): Sneeuw, KC, Sprangers, MA and Aaronson, NK, The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. J Clin Epidemiol. 22; 55(): Tripoliti, E, Campbell, C, Pring, TR, et al., Quality of life in multiple sclerosis: should clinicians trust proxy ratings? Mult Scler Sneeuw, KC, Albertsen, PC and Aaronson, NK, Comparison of patient and spouse assessments of health related quality of life in men with metastatic prostate cancer. J Urol. 2; 65(2): Sneeuw, KC, Aaronson, NK, Osoba, D, et al., The use of significant others as proxy raters of the quality of life of patients with brain cancer. Med Care. 997; 35(5): Pickard, AS and Knight, SJ, Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care. 25; 43(5): Questions? Contact details: steven_mcphail@health.qld.gov.au The University of Queensland & Princess Alexandra Hospital, Brisbane Australia