Listening for the Consumer’s Voice: Measuring Quality of Life for People Using LTC Supports and Services

1. Listening for the Consumer’s Voice: Measuring Quality of Life for People Using LTC Supports and Services Mary L. James University of Michigan Michigan’s Long-Term Care Conference Troy, Michigan March 23, 2006

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

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

4. 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

5. QoL Measurement Isn’t Universally Beloved • “Tyranny of Quality” • “Colonial ethnocentrism” • “American passion for reducing complex qualitative concepts to simple scalar instruments”

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. LTC Populations: Additional Challenges • Hearing ability • Vision • Cognitive ability • Outreach strategies

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

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

16. AKA the “POSM” Project • Add cute pic of the possum here

17. 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

18. 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

19. 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?

20. Meaningful Relationships Intimacy Participation in social activities Community integration/inclusion 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 Availability of care/supports Physical health Functional competence ADLs IADLs Pain Issues included on POSM Issue on MDS-HC Duplicate issue area Updated 4/12/05

21. 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

22. 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

23. Approach • Test some “similar” items • Pair most items: • Importance as well as occurrence • Test “wide” response set • Seek review by large number of individuals

24. 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