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