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Listening for the Consumer’s Voice: Measuring Quality of Life for People Using LTC Supports and...
Transcript of Listening for the Consumer’s Voice: Measuring Quality of Life for People Using LTC Supports and...
Listening for the Consumer’s Voice: Measuring Quality of Life for People Using LTC Supports and Services
Mary L. JamesUniversity of Michigan
Michigan’s Long-Term Care ConferenceTroy, Michigan March 23, 2006
Agenda
Becoming an informed consumer of QoL information
Update on the Pinckney Project
Agenda
Becoming an informed consumer of QoL information
Update on the Pinckney Project
Proposed Aim of Public Policy in QoL:
Reduce the distance/difference between the individual’s actual and desired QoL
Individual choice should be the guiding principle for any action taken
QoL Measurement Isn’t Universally Beloved
“Tyranny of Quality” “Colonial ethnocentrism” “American passion for reducing complex
qualitative concepts to simple scalar instruments”
The Wide World of QoL Research
Huge industry, many activities– Governmental initiatives– Accreditation agencies, like NCQA HEDIS – Specialty measures: Alzheimer’s, PWID, cancer,
diabetes, kidney disease, etc
Specialty journals, societies
Confusing And Overlapping Terms Abound
Happiness– ☺– Longitudinal studies: a durable trait, or temperament
Life Satisfaction– How well life’s expectations have been met
Subjective Well-Being – Overall QoL of life-as-a whole– Global expression of satisfaction with nature and quality of
one’s own life– Some researchers think SWB = Happiness
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
Biologically, We Are Designed to Be Positive
Cummin’s “homeostatic mechanism” Loewenstein’s “happiness set-point” Measurement of QoL needs to account for
this positive bias
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
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
People Are “Surprising And Complex”
Surrogate (“proxy”) measures do not accurately reflect the values and perceptions of the person– Research can’t 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
LTC Populations: Additional Challenges
Hearing ability Vision Cognitive ability Outreach strategies
Agenda
Becoming an informed consumer of QoL information
Update on the Pinckney Project
Sponsors
Funded by Michigan Department of Community Health
CMS Real Choice Systems Change Grant
AKA the “POSM” Project
Add cute pic of the possum here
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
Project Goals for Measuring QoL
Help individuals get the life they want Insure that people aren’t “institutionalized” at
home Look at a person’s whole life Drive system to respond to preferences and
values of consumers without expanding resource base
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?
AutonomyIndependence
Choice and controlSelf-determination
IndividualityIdentityDignity RespectPrivacy
Meaningful RelationshipsIntimacy
Participation in social activitiesCommunity integration/inclusion
NormalizationMeaningful activity Role performance
Psychological healthAnxiety/depression
Spiritual well-being Enjoyment
Satisfaction
SecurityAccommodation of needs
Living situationFinancial resources
EnvironmentAvailability of care/supports
Physical healthFunctional competence
ADLsIADLsPain
QoL
Updated 4/12/05
Issues included on POSMIssue on MDS-HCDuplicate issue area
AutonomyIndependence
Choice and control
IndividualityDignity RespectPrivacy
Meaningful Relationships Community integration
Meaningful activity
Spiritual well-being Satisfaction
SecurityAccommodation of needs
Availability of care/supports
QoL
Issue Areas Addressed in POSM as of July 2005
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
Approach
Test some “similar” items Pair most items:
– Importance as well as occurrence
Test “wide” response set Seek review by large number of individuals
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