Listening for the Consumer

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Listening for the Consumers Voice Measuring
Quality of Life for People Using LTC Supports and
Services

• Mary L. James
• University of Michigan
• Michigans Long-Term Care Conference
• Troy, Michigan
• March 23, 2006

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Agenda

• Becoming an informed consumer of QoL information
• Update on the Pinckney Project

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Agenda

• Becoming an informed consumer of QoL information
• Update on the Pinckney Project

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Proposed Aim of Public Policy in QoL

• Reduce the distance/difference between the
  individuals actual and desired QoL
• Individual choice should be the guiding principle
  for any action taken

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QoL Measurement Isnt Universally Beloved

• Tyranny of Quality
• Colonial ethnocentrism
• American passion for reducing complex
  qualitative concepts to simple scalar
  instruments

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The Wide World of QoL Research

• Huge industry, many activities
• Governmental initiatives
• Accreditation agencies, like NCQA HEDIS
• Specialty measures Alzheimers, PWID, cancer,
  diabetes, kidney disease, etc
• Specialty journals, societies

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Confusing And Overlapping Terms Abound

• Happiness
• ?
• Longitudinal studies a durable trait, or
  temperament
• Life Satisfaction
• How well lifes expectations have been met
• Subjective Well-Being
• Overall QoL of life-as-a whole
• Global expression of satisfaction with nature and
  quality of ones own life
• Some researchers think SWB Happiness

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Terms And Measurement May Share Much Variance

• Cummins .79 correlation between LS and SWB
• Kozma and Stones Happiness explained most
  variance across 3 QoL studies with elderly people

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Biologically, We Are Designed to Be Positive

• Cummins homeostatic mechanism
• Loewensteins happiness set-point
• Measurement of QoL needs to account for this
  positive bias

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Qol Measurement Should Address Both Objective and
Subjective Measures

• Objective function, health, wealth, etc
• Subjective value accorded any measure by the
  individual
• Much research shows two are poorly correlated

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Different Groups of People Value Qol Domains
Differently

• Young people are less satisfied with lives
  overall complain more, more negative re future
• Subjective well-being rises into middle age then
  stabilizes
• Temperament better predictor of subjective
  well-being than objective measures

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People Are Surprising And Complex

• Surrogate (proxy) measures do not accurately
  reflect the values and perceptions of the person
• Research cant reliably predict direction of bias
  in given proxy group
• Concerns about acquiescence bias or social
  desirability bias
• Interviewer effects, e.g., in recent Kane study
  for CMS no agreement on how to overcome

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LTC Populations Additional Challenges

• Hearing ability
• Vision
• Cognitive ability
• Outreach strategies

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Agenda

• Becoming an informed consumer of QoL information
• Update on the Pinckney Project

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Sponsors

• Funded by Michigan Department of Community Health
• CMS Real Choice Systems Change Grant

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AKA the POSM Project

• Add cute pic of the possum here

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Project Design Team

• University of Michigan
• Brant Fries
• Mary James
• Angela Schmorrow
• Michigan Dept. of Community Health
• Michael Daeschlein
• Mike Head
• Pamela McNab
• Other Stakeholders
• David Youngs
• Jim Conroy
• RoAnne Chaney
• Marion Owen
• Barb Stoops

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Project Goals for Measuring QoL

• Help individuals get the life they want
• Insure that people arent institutionalized at
  home
• Look at a persons whole life
• Drive system to respond to preferences and values
  of consumers without expanding resource base

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So Many Domains, So Little Time

• What domains are we already assessing in other
  ways?
• What domains do we need in order to complete the
  quality of life picture for Michigan LTC users?

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Meaningful Relationships Intimacy Participation
in social activities Community integration/inclusi
on Normalization Meaningful activity Role
performance
Individuality Identity Dignity Respect Privacy
Autonomy Independence Choice and
control Self-determination
QoL
Psychological health Anxiety/depression Spiritual
well-being Enjoyment Satisfaction
Security Accommodation of needs Living
situation Financial resources Environment Availabi
lity of care/supports
Physical health Functional competence ADLs IADLs P
ain
Issues included on POSM Issue on MDS-HC Duplicate
issue area
Updated 4/12/05
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Meaningful Relationships Community
integration Meaningful activity
Individuality Dignity Respect Privacy
Autonomy Independence Choice and control
QoL
Spiritual well-being Satisfaction
Security Accommodation of needs Availability of
care/supports
Issue Areas Addressed in POSM as of July 2005
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Desired Design Specifications

• 30 minutes to complete
• Separate from other assessment activity
• No duplicate items/domains
• Face-to-face with an interviewer
• Could be peer interviewer
• 6th grade vocabulary
• Design for use with persons without major
  cognitive issues
• Quality of Life, not satisfaction with services

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Approach

• Test some similar items
• Pair most items
• Importance as well as occurrence
• Test wide response set
• Seek review by large number of individuals

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Project Timeline

• Review stakeholder feedback, amend items if
  needed June to September 2005
• Formal Testing October to March 2006
• Time to complete
• Acceptability of items
• Ability to perform in diverse settings (e.g.,
  nursing home, home)
• Statistical analysis April 2006
• Identify items with no variation in responses
• Identify redundant items
• Develop scales
• Official Version 1.0 of instrument July 2006