WHOSE QUALITY OF LIFE Exploring Discrepancies Between Health State Evaluations of Patients and the G

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WHOSE QUALITY OF LIFE?Exploring Discrepancies
Between Health State Evaluations of Patients and
the General Public

• Peter A. Ubel, M.D.
• Program for Improving Health Care Decisions
• Ann Arbor VAMC
• University of Michigan Health System

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Acknowledgements

• George Loewenstein
• Jack Hershey
• Jonathan Baron
• Christopher Jepson
• Norbert Schwarz
• Angie Fagerlin
• Jason Riis
• Dylan Smith
• Andrew Siderowf

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And, of course . . .
David Asch
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Disability Paradox

• People with disabilities are often much happier
  than non-disabled people think they would be

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Lottery Winners Vs. Accident Victims

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Lottery Winners Vs. Accident Victims

• In a famous study, happiness was measured one
  year after
• winning the lottery

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Lottery Winners Vs. Accident Victims

• In a famous study, happiness was measured one
  year after
• winning the lottery
• developing paraplegia or quadriplegia from an
  automobile accident

Vs.
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Lottery Winners Vs. Accident Victims

• Results Relatively little difference in quality
  of life and happiness

Vs.
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Discrepancy Between Patients and Non-patients

• Utility of dialysis
• patients 0.56
• non-patients 0.39
• Utility of having a colostomy
• patients 0.92
• non-patients 0.80

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Economic Importance of This Discrepancy

• Whos utilities should we include in cost
  effectiveness analyses?

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Clinical Importance of this Discrepancy

• Whos quality of life should guide clinical
  decision making?

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Goals of Talk

• Discuss possible factors contributing to
  discrepancies between health state evaluations of
  patients and the general public
• Show that an answer to the question of whos
  values to measure depends on source(s) of the
  discrepancy.

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From the Outset

• Agnostic view of whos to blame for
  discrepancies
• Clearly public mispredicts
• how they would answer QoL questions
• But that doesnt mean they mispredict
• QoL
• Patients might give faulty QoL reports

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From the Outset

• I will explore potential sources of discrepancies
  arising from
• patient error
• public error
• different points of view

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From the Outset

• I will focus on physical disabilities
• Where the discrepancy usually takes the following
  form
• QoL patient gt QoL public
• I will ignore illnesses/disabilities that have a
  big affect on mood
• e.g. depression, pain, chronic fatigue

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From the Outset

• There is no gold standard for measuring
• utility
• happiness
• QoL
• life satisfaction
• Whats more, all these concepts are
• multifaceted, complex,
• viewed differently by different people

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Potential Source of Discrepancies Incomplete
health state descriptions
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Incomplete Health State Descriptions

• Health state descriptions by definition are
  incomplete
• patients will be able to fill in much of the
  missing data
• but non-patients will not
• they might leave the details out
• or they might fill it in as best they can, with
  or without bringing their own biases to bear

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Global versus Momentary QoL
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Global versus Momentary QoL

• People have difficulty describing average
  emotions over time
• There may be a discrepancy between
• moment to moment SWB
• general evaluation of SWB

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No pain, no gain
High
Pain
Pain
Low
60
60
90
Time
Time
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Imagine a Dialysis Patients Quality of Life

• How happy are you right now (0 - 10)?
• 6
• 5
• 5
• 6
• 8
• How happy do you feel generally?
• 7

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Are Dialysis Patients as happy as they say?

• Collected momentary and global health ratings
  from dialysis patients
• Dialysis patients often experience hour to hour
  shifting of energy levels
• How well do they sum up these experiences?

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(No Transcript)
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Subjects

• Patients
• 6 dialysis centers. All 203 patients asked to
  participate
• 116 couldnt or wouldnt
• 63 participated (35)
• Controls
• Newspaper ads
• Screened for major health conditions
• 35 participated

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Self Reported Health
In general, would you say your health is
CONTROLS 2.3
PATIENTS 3.7
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Three stages of data collection

• Entry Interview
• Palm-pilot data
• Exit Interview

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Entry Percentage of time, during a typical
week, that you are in each of the following moods?
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Palm Week

• Carried Palms for 1 week
• Palms beeped 8 times per day
• The Palm could be put to sleep

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Palm Week
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Predicted Moods
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Predicted vs. Actual Mood
Predicted Mood
p .19
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Specific Moods (0-6 scale)- Palm Data -
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Selection Effect?

• The 116 non-participating patients were asked for
  their average mood.
• M .74
• 56 were 2 or 1
• 9 were 2 or 1

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Dialysis
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Dialysis
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Dialysis
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Dialysis
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Healthy (Never had kidney problems )
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Healthy (Never had kidney problems )
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Conclusions

• Dialysis patients show hedonic adaptation.
• Healthy people do not anticipate this adaptation
  and this can explain at least part of the
  discrepancy.
• Patients themselves do not seem to appreciate the
  extent to which they have adapted.

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Who Wants to Know?
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Who wants to Know?

• Imagine a person with PKS disease receiving the
  following phone call
• We are calling people with Parkinsons Disease
  to find out about their quality of life. . .
• How does the conversational context influence
  responses?
• I know that he knows that I have Parkinsons . .
  .

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Who wants to know?

• Conversational context likely to push in two
  directions
• QOL up Given that I have Parkinsons, I am
  doing rather well . . .
• QOL down by priming effect How happy am I? . .
  . Well now that you have reminded me about my
  Parkinsons . . .

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Who wants to know Study Design

• Call PKS patients cared for at UPENN
• half given intro like above
• half given other intro We are calling people in
  the Northeastern portion of the United States . .
  .

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Who wants to know Study Design

• Ask them the following questions
• Life satisfaction
• Health Satisfaction
• Why in that order?
• Let me take a quick detour

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Is there more to life than love?

• Q1 How satisfied are you with your love life?
• Q2 How satisfied are you with your life overall
• correlation 0.7
• Ask the second question before the first
• correlation -0.1

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Who wants to know results

• No difference in life satisfaction between two
  groups
• both groups had high satisfaction
• Big change in how important health appeared to be
  in determining peoples overall satisfaction
• Parkinson group - life satisfaction explained 50
  by health satisfaction
• Northeastern USA group life satisfaction
  explained lt 10 by health satisfaction

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Focusing Illusion
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Focusing Illusion

• What do people think about when they imagine
  paraplegia?
• being in a wheel chair
• activities affected by paraplegia
• What will they probably not consider?
• activities unaffected by paraplegia
• watching T.V.
• enjoying a good conversation
• savoring a tasty meal

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Focusing Illusion (continued)

• People might overestimate the emotional
  impact of events by disproportionately focusing
  on narrow life domains influenced
  by the events
• football fans
• college students in California
  and Michigan

X
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Focusing Illusion Implications

• To the extent that a focusing illusion
  contributes to the discrepancy
• public utility responses are flawed
• Implications
• an argument for elicitations from patients
• or for finding ways to eliminate the focusing
  illusion

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Eliminating the focusing illusion Defocusing
Studies

• General design
• QoL of paraplegia or BKA
• ask subjects to estimate QoL before and after
  defocusing task
• Hypothesis QoL estimates will increase after the
  defocusing task

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Subjects

• Prospective jurors in Philadelphia County
  courthouse

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Subjects

• Prospective jurors in Philadelphia County
  courthouse

• Reimbursement

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First Defocusing TaskLife Domains

• How much do you think having a below-the-knee
  amputation would affect
• Your overall health?
• Your standard of living?
• Your work?
• Your love life?
• Your family life?
• Your social life?
• Your spiritual side of your life?
• Your leisure activities, such as hobbies,
  pastimes, travel, and entertainment?

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Disability Ratings Before and After Defocusing
Exercise

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 53
• BKA 52

58.5 78.1
51.8 72.3
0.02 0.01
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Second Defocusing Task Concrete Events

• If you had below the knee amputation/paraplegia,
  what would your experience of these things be
  like compared to now?
• visiting with friends and/or family
• paying bills and taxes
• vacation and travel
• getting caught in traffic
• physical recreational activities
• arguing with family and/or friends
• reading and/or watching TV or movies
• coping with death and/or illness in the family

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Concrete Events Defocusing Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 50
• Paraplegia 51
• BKA 51
• BKA 51

55 - 71 -
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Concrete Events Defocusing Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 50
• Paraplegia 51
• BKA 51
• BKA 51

55 - 71 -
51 45
.41 .05
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Concrete Events Defocusing Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 50
• Paraplegia 51
• BKA 51
• BKA 51

55 - 71 -
51 45 72 67
.41 .05 .27 .34
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Third Defocusing Task Time Weighted

• Think about the past day, starting from when you
  woke up yesterday to when you woke up this
  morning. What did you do yesterday? In the
  spaces provided, we would like you to list the
  things that took up the most amount of time from
  yesterday when you woke up to today when you woke
  up.
• Subjects were asked to imagine how these five
  activities would be affected if they had the
  disability in question.

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Time Weighted Defocusing Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 57
• Paraplegia 60
• BKA 53
• BKA 54

51 - 75 -
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Time Weighted Defocusing Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 57
• Paraplegia 60
• BKA 53
• BKA 54

51 - 75 -
50 45
.59 .23
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Time Weighted Defocusing Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 57
• Paraplegia 60
• BKA 53
• BKA 54

51 - 75 -
50 45 74 67
.59 .23 .60 .08
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Fourth Defocusing Task Changes for Better or
Worse

• To get subjects to think more broadly about
  disabilities
• We asked them to think about aspects of their
  life that would probably
• change for the better
• be unchanged
• change for the worse

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Changes Results

• QoL Rating (0 - 100)
• Disability N Before After P

Paraplegia 105 53 Paraplegia
103 -- BKA 117 75
BKA 106 --
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Changes Results

• QoL Rating (0 - 100)
• Disability N Before After P

Paraplegia 105 53 55
.09 Paraplegia 103 -- 57
.46 BKA 117 75 BKA
106 --
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Changes Results

• QoL Rating (0 - 100)
• Disability N Before After P

Paraplegia 105 53 55
.09 Paraplegia 103 -- 57
.46 BKA 117 75 75
.31 BKA 106 -- 73
.29
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Focusing Illusion Implications

• To the extent that a focusing illusion
  contributes to the discrepancy
• public utility responses are flawed
• Implications
• an argument for elicitations from patients
• or for finding ways to eliminate the focusing
  illusion

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Response Shift
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Response Shift
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What is a 10 to an 85 Year Old
My health is 9 out of 10
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Evidence for possible response shift
Note 0-5 scale
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Research in Progress Comparison Group

• Survey elderly people
• Have them rate their health on a 0 - 100 scale
• 100 perfect health
• 100 best possible health for your age
• 100 best possible health for a 20 year old
• Among other things, will be able to see which
  measure best predicts other self reported health
  responses

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Preliminary Results

• 100 perfect health
• mean rating 73
• 100 best possible health for your age
• mean rating 73
• 100 best possible health for a 20 year old
• mean rating 65

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More Research in Progress How does lung
disease compare

• Ask patients and non-patients to rate QoL of 30
  health and non-health related conditions
• Dandruff, nasty boss, long commute, asthma, etc.
• Have them rate moderate shortness of breath from
  lung disease
• Our dream results . . .

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Dream 1 No Response Shift
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Dream 2 Response Shift
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Another explanation to considerTheory driven
recall bias
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A useless study skills course

• Measured study skills before course
• suppose mine are 6 out of 10
• I know that mine are 6 out of 10
• Measure study skills again after course
• still 6 out of 10
• and I still believe they are 6 out of 10
• but I think I am much better now. How?

I remember having skills of 4 out of 10 before
the course
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Separating response shift from recall bias

• Conducting longitudinal studies of adaptation to
  new illnesses and disabilities
• colostomy
• amputation
• spinal cord injury

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Separating response shift from recall bias

• Have recall measures and follow up surveys
• some of which are not susceptible to response
  shift
• e.g. Percent time in good mood
• compare recall bias for these versus other
  measures

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Adaptation
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Adaptation

• For adaptation to contribute to the discrepancy,
  2 things must occur
• 1. Patients must adapt
• 2. Non-patients must underestimate adaptation
• by not considering it
• or by not believing it

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What is Adaptation?

• Physical
• Emotional
• Strong emotions do not persist
• reduction in expectations
• no longer care about taking long walks in the
  woods
• people with arthritis stop playing the piano and
  start singing

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Are Disability Ratings Influenced by Failure to
Consider Adaptation?

• Adaptation exercise
• Think of bad event from more than 6 months ago
• more or less upsetting than predicted
• emotions stronger or weaker over time?
• List the 2 most upsetting things about becoming
  paraplegic
• Do you think these 2 things would become more or
  less upsetting over time?

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Adaptation Results

• QoL Rating (0 - 100)
• Disability N Before After P
• Paraplegia 123
• Paraplegia 56

.003 .001
47 -
52 62
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Adaptation Implications

• If failure to consider adaptation influences the
  discrepancy,
• one could argue that public utility elicitations
  are flawed and must be improved or abandoned

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Adaptations Implications (continued)

• However, one could also debate whether adaptation
  ought to influence utility responses
• Suppose people are on an hedonic treadmill
• whatever happens to people, they return to
  baseline SWB
• then, health interventions that improve the
  quality of life would be significantly devalued
• is that what is best for society?

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Where do we go from here?
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Where do We Go from Here?

• Conduct more research, of course
• But dont expect to find the truth anytime soon
• is there a gold standard for measuring utility or
  happiness or quality of life?
• Policy planners need to decide what it is that
  health care and other public interventions ought
  to influence
• function
• happiness
• subjective quality of life
• etc.

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Health State Description Ambiguity About
Recency of Onset
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Health State Description Ambiguity About
Recency of Onset

• Health state descriptions are often ambiguous
  about when the ailments in question began
• imagine you are completely blind

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Program for Improving Health Care
Decisions www.med.umich.edu/pihcd