PC-PAL: USING METRICS TO MEASURE PERSON-
CENTERED PRACTICES
Maribeth Bersani Senior Vice-President, ALFA
Sheryl Zimmerman Professor, UNC-CH
The Movement
▶ Pioneers started the assisted living movement 25 years ago
▶ Goal: Develop a residential alternative to skilled nursing facilities
▶ Consumer driven, resident centered
▶ News flash: Residents, not staff, regulators or even families, make the decisions
Enemy # 1
Founding Principles of Assisted Living
▶ Choice
▶ Dignity
▶ Independence
▶ Respect
▶ All lead to PCC
How Do We Define PCC ?
▶ We know it when we see it
▶ Creating pleasant days
▶ Purposeful living
▶ Individualized care plans
▶ Quality of life
Moments of Joy
Purpose and Meaning
Choice
Challenges
▶ No one size fits all
▶ Balancing choice with risk and safety
▶ State regulatory requirements
The Bar Has Been Raised
▶ PCC: the new normal
▶ Residents, families, regulators expect it
▶ CMS Home and Community Based Waiver Rule
How Do You Know if You Are Delivering PCC?
▶ You will have the tools you need at the end of this session
▶ Why do we need to measure? – We need to demonstrate to law makers,
regulators, media and families that we are delivering PCC
– Consumers can make a better informed choice on where to live
Keep up the Great Work
▶ 94% of AL residents say they are satisfied or very satisfied with the overall quality of life in their AL community
“Older people need a dream as well as a memory”
Dr. Arthur Flemming 1995 White House Conference on Aging
Person-‐Centered Care
Strongly Disagree
Disagree Agree Strongly Agree
The ac'vi'es here are meaningful to me.
1 2 3 4
I have the privacy I want when I receive my medica'ons.
1 2 3 4
Caregivers, administrators, and other staff introduced me to residents who have common interests so we could develop friendships.
1 2 3 4
How would your residents answer these ques9ons (and 46 others)?
Why?
Person-‐Centered Care
Strongly Disagree
Disagree Agree Strongly Agree
My feedback is welcomed and responded to.
1 2 3 4
There are social events that everyone (residents, families, caregivers, administra've staff) can enjoy together.
1 2 3 4
My performance review includes how well I help residents according to their personal preferences and goals.
1 2 3 4
How would your staff answer these ques9ons (and 59 others)?
Why?
A Collabora9ve Research Project to Develop a Measure of
Person-‐Centeredness in Assisted Living Sheryl Zimmerman, Lauren Cohen, David Reed, Philip Sloane
Cecil G. Sheps Center for Health Services Research University of North Carolina at Chapel Hill
Josh Allen, Jackie Pinkowitz Center for Excellence in Assisted Living
Jayne Clairmont, Walter Coffey, Lisa Demeter, Susan Frazier, Pat Giorgio, Michael Lepore, Peter Reed
Community Partners
Supported by the Na/onal Ins/tute on Aging Grant R21 AG038808
My Personal Interest
CEAL White Paper
Person-‐Centered Care
To provide care and support in a dignified, respecHul
manner that honors personal choice, interests, and needs, including having control over decisions that affect daily
life; and to maintain normalcy in daily rou'nes including having meaningful and interes'ng things to do
CEAL White Paper
Domains of Person-‐Centered Care
1. Core values and philosophy (personhood, respect, dignity, autonomy, independence, choice, privacy)
2. Rela'onships and community 3. Senior management/ownership/governance 4. Leadership 5. Workforce 6. Services 7. Meaningful life 8. Environment 9. Accountability
UNC-‐CEAL Research Project
Aim: Use community-‐based par'cipatory research to develop research quality self-‐administered measures of person-‐centered care (PCC) from the perspec've of residents and staff
Partners
The Center for Excellence in Assisted Living (CEAL) A collabora've of 11 na'onal organiza'ons working together to promote excellence in assisted living (AALNA, AARP, ALFA, Alzheimer’s Associa'on, ASHA, CCAL, LeadingAge, NCAL, NCB, Pioneer Network, Paralyzed Veterans)
The University of North Carolina at Chapel Hill (UNC) An interdisciplinary team of scholars conduc'ng research to promote quality of life and long-‐term care
Community members, organiza9onal representa9ves Other key stakeholders relevant to the mission at hand
UNC-‐CEAL Research Project
1. Conduct literature search to iden'fy specific acributes/indictors of PCC; develop measurable ques'onnaire items for each one
2. Cogni'vely test ques'onnaires in two assisted living communi'es; discuss results and revise items
3. Test ques'onnaires in 19 assisted living communi'es
4. Review results and reach consensus about findings and implica'ons for prac'ce and policy
5. Disseminate findings and advocate use
Person-‐centered Resident-‐centered Pa'ent-‐centered Family-‐centered Person-‐centered care Resident-‐centered care Pa'ent-‐centered care Family-‐centered care Person-‐directed care Resident-‐directed care Pa'ent-‐directed care Family-‐directed care Person-‐centeredness Resident-‐centeredness Pa'ent-‐centeredness Family-‐centeredness Personhood Culture change Eden Alterna've Green House Homes Wellspring Planetree Ar'facts (of Culture Change) Pa'ent-‐Environment Transac'on Experience of Home
CMS/HCBS division FutureAge Provider LTC Living Eden Alterna've CARF Ins'tute for Caregiver Educa'on Kansas Founda'on for Medical Care Colorado Founda'on for Medical Care Green House Project Wellspring Planetree American College of Health Care Administrators Center for Excellence in Assisted Living Na'onal Resource Center for Par'cipant-‐Directed Services PC experts Council on Quality and Leadership Ins'tute for Pa'ent & Family-‐Centered Care Names of known experts and authors in the field
Literature Review
Domain Ques9onnaire
I receive care and services according to my life history, personal preferences, and goals.
And many others ….
Each person is a unique individual with his/her own background, interests, needs, preferences, daily rou'nes, capabili'es, cultural/spiritual/ethnic prac'ces, lifestyle preferences and hobbies, and personality traits.
“The woman hit the man with the umbrella” What happened?
“Should people get the flu shot?” Which people? “Do you eat five fruits and vegetables a day?” How many?
“Do you eat five fruits and vegetables a day?” Do both macer?
“How much television do you watch?” What macers?
Collabora9ve Item Development
Who thinks like that when they
answer?
Ques9onnaires
Resident Staff
Ques9onnaires
Design: Two assisted living communi'es; 4 residents, 8 staff
Eligibility: Living/working there at least three months;
able to complete ques'onnaire independently
Complete ques'onnaire Put ques'ons in own words and explain why gave that answer
Cogni9ve Tes9ng
Resident Staff
Cogni9ve Test: Results
Comple'on 'me: 18 minutes
Ques'ons modified for clarity
Example The same staff members usually assist the same residents The same caregivers usually assist…
Comple'on 'me: 16 minutes
Ques'ons modified for clarity
Example I have the choice for staff to update other residents about how I am doing if I am in the hospital If I am in the hospital, I have the choice …
Design: 19 assisted living communi'es of varying size in 6 states
RESIDENT Eligibility and Response N (%)
Total residents 1,008
Ineligible 544 (54%)
Cogni9vely impaired 375 (71%)
Physically impaired 80 (15%)
Lived in AL < 3 months 88 (16%)
Non-‐English speaking 1 (<1%)
Eligible 464 (46%)
Completed ques9onnaire 231 (50%)
STAFF Eligibility and Response N (%)
Total staff 722
Ineligible 176 (24%)
Younger than 21 77 (44%)
Employed < 3 months 95 (54%)
Non-‐English speaking 4 (2%)
Eligible 546 (76%)
Completed ques9onnaire 123 (23%)
Ques9onnaire Tes9ng
Aim: Use community-‐based par'cipatory research to develop research quality self-‐administered measures of person-‐centered care from the perspec've of residents and staff.
Key ques9on: What is person-‐centered care to residents and staff?
Analy9c method: Factor analysis
Collabora9ve Data Analysis
• Sta's'cal method to test and simplify/shorten ques'onnaires
• Looks for rela'onship in how people answer ques'ons • Examining rela'onships iden'fies the underlying concept similar to all ques'ons (i.e., the team iden'fies the underlying “factor”)
Health
-‐ BMI -‐ Chronic
condi9ons -‐ Energy
Work life
-‐ Workload -‐ Respect -‐ Pay
Personal life
-‐ Family -‐ Hobbies -‐ Friends
Honda Toyota
Shoe size
-‐ Func9on -‐ Illnesses -‐ Energy
-‐ Workload -‐ Respect -‐ Pay
-‐ Family -‐ Hobbies -‐ Friends
Popcorn Pizza
Blond Brunece
Factor Analysis
• Sta's'cal method to test and simplify/shorten ques'onnaires
• Looks for rela'onship in how people answer ques'ons • Examining rela'onships iden'fies the underlying concept similar to all ques'ons (i.e., the team iden'fies the underlying “factor”)
Health
-‐ BMI -‐ Chronic
condi9ons -‐ Energy
Work life
-‐ Workload -‐ Respect -‐ Pay
Personal life
-‐ Family -‐ Hobbies -‐ Friends
Cars Honda Toyota
Shoe size
Health
-‐ Func9on -‐ Illnesses -‐ Energy
Work life
-‐ Workload -‐ Respect -‐ Pay
Personal life
-‐ Family -‐ Hobbies -‐ Friends
Snacks Popcorn Pizza
Hair Blond
Brunece
Factor Analysis
Factor analysis requires complete data
Decisions
Respondents must answer at least 70% of ques'ons, as fewer suggest:
• Do not understand ques'ons • Not able to respond to ques'ons
Individual ques'ons must be answered (SD, D, A, or SA) by at least 70% of respondents, as fewer suggest:
• Ques'on is confusing • Respondents don’t know the answer
Data Analysis
• When I moved in, my family was welcomed and provided informa9on about the ac9vi9es and services.
• There are social events that everyone (residents, families, caregivers, and administra9ve staff) can enjoy together.
• There are ac9vi9es here that include people from outside the community, including children.
• Transporta9on is provided to go to places and ac9vi9es outside of the assisted living community.
• I have the opportunity to go outdoors as much as I want to. • When I am in pain or discomfort, caregivers take steps to relieve it. • Many types of caregiving and administra9ve staff spend 9me with me
doing interes9ng ac9vi9es. • I can take part in daily ac9vi9es and spend 9me with other people, as
liile or as much as I want. • There are different types of ac9vi9es that are interes9ng to do here. • Overall, I am sa9sfied with my family’s inclusion in this assisted living
community.
Factor Name:
• When I moved in, my family was welcomed and provided informa9on about the ac9vi9es and services.
• There are social events that everyone (residents, families, caregivers, and administra9ve staff) can enjoy together.
• There are ac9vi9es here that include people from outside the community, including children.
• Transporta9on is provided to go to places and ac9vi9es outside of the assisted living community.
• I have the opportunity to go outdoors as much as I want to. • When I am in pain or discomfort, caregivers take steps to relieve it. • Many types of caregiving and administra9ve staff spend 9me with me
doing interes9ng ac9vi9es. • I can take part in daily ac9vi9es and spend 9me with other people, as
liile or as much as I want. • There are different types of ac9vi9es that are interes9ng to do here. • Overall, I am sa9sfied with my family’s inclusion in this assisted living
community.
Factor: Social Connectedness and Rela9onships
Well-‐being and Belonging (18 items)
-‐ It feels like home. -‐ MealDmes are pleasant and
enjoyable for me. -‐ Overall, I am saDsfied with the
acDviDes here and how they are provided.
Individualized Care and Services (12 items)
-‐ Caregivers, administraDve, and other staff address me using my preferred name.
-‐ I am involved in planning my care and services.
-‐ I have the privacy I want when I receive my medicaDons.
Social Connectedness and Rela9onships ( 10 items) -‐ TransportaDon is provided to go
to places and acDviDes outside of the assisted living community.
-‐ I can take part in daily acDviDes, and spend Dme with other people, as liJle or as much as I want.
Atmosphere (9 items)
-‐ It is difficult to get around here. -‐ Caregivers and administraDve
staff don’t know what is meaningful to me.
-‐ Overall, I don’t like the food that is served here.
Resident Factors (49 items)
Well-‐being and Belonging (18 items)
-‐ It feels like home. -‐ MealDmes are pleasant and
enjoyable for me. -‐ Overall, I am saDsfied with the
acDviDes here and how they are provided.
Individualized Care and Services (12 items)
-‐ Caregivers, administraDve, and other staff address me using my preferred name.
-‐ I am involved in planning my care and services.
-‐ I have the privacy I want when I receive my medicaDons.
Other (26) Resident Items
EXAMPLES
• Grief and healing support is available to residents, families, caregivers, and other staff aper someone dies.
• Residents complete sa'sfac'on surveys at least once a year, and the results are shared with everyone.
• I can keep a pet here if I want to. • My family members can have input into policies and prac'ces here.
Workplace Prac9ces (23 items)
-‐ My feedback is welcomed and responded to.
-‐ The workload is distributed fairly among staff.
-‐ The staff work well together.
Individualized Care and Services (8 items)
-‐ Caregivers respect and know residents’ abiliDes, life history, needs, and personal preferences.
-‐ Residents have the privacy they want when they receive their medicaDons.
Social Connectedness ( 16 items)
-‐ TransportaDon is provided to go to places and acDviDes outside of the assisted living community.
-‐ Residents can take part in daily acDviDes, and spend Dme with other people, as liJle or as much as they want.
Atmosphere (8 items)
-‐ It is difficult to get around here. -‐ Caregivers ignore residents’
concerns. -‐ It is noisy at night.
Staff Factors (62 items)
Caregiver-‐Resident Rela9onships (7 items)
-‐ Caregivers treat finishing their work as more important than meeDng resident needs and personal preferences.
Well-‐being and Belonging (18 items)
-‐ It feels like home. -‐ MealDmes are pleasant and
enjoyable for me. -‐ Overall, I am saDsfied with the
acDviDes here and how they are provided.
Individualized Care and Services (12 items)
-‐ Caregivers, administraDve, and other staff address me using my preferred name.
-‐ I am involved in planning my care and services.
-‐ I have the privacy I want when I receive my medicaDons.
Other (40) Staff Items
EXAMPLES
• Residents complete sa'sfac'on surveys at least once a year, and the results are shared with everyone.
• Residents feel a sense of belonging here. • Resident feedback and complaints are welcomed and responded to.
• Caregivers use prac'ces other than medica'ons to address resident’s behavioral challenges.
Two ques9onnaires and scoring instruc9ons
Residents: 49 items Staff: 62 items
Addi9onal ques9ons Residents: 26 items Staff: 40 items
Available at www.theceal.org
www.shepscenter.unc.edu
PC-‐PAL Toolkit
Individualized Care and Services (12 items)
-‐ Caregivers, administraDve, and other staff address me using my preferred name.
-‐ I am involved in planning my care and services.
-‐ I have the privacy I want when I receive my medicaDons.
Scoring the PC-‐PAL
Well-‐being and Belonging (18 items)
-‐ It feels like home. -‐ MealDmes are pleasant and
enjoyable for me. -‐ Overall, I am saDsfied with the
acDviDes here and how they are provided.
Individualized Care and Services (12 items)
-‐ Caregivers, administraDve, and other staff address me using my preferred name.
-‐ I am involved in planning my care and services.
-‐ I have the privacy I want when I receive my medicaDons.
Frequently Asked Ques9ons
What is a “good” score on the PC-‐PAL? The highest possible score is 100; in tes/ng, resident scores averaged 75, and staff scores averaged 80.
Is it worth comparing resident and staff scores? Yes, especially in areas they both considered reflected person-‐centeredness.
Do scores on the separate areas macer? Yes, they allow understanding of where care may be beNer or indicate room for improvement.
Can we use this for families, and in nursing homes? Yes, but keep in mind that percep/ons of person-‐centeredness may differ somewhat.
How Person-‐Centered Are Your Prac9ces?
Available at www.theceal.org
www.shepscenter.unc.edu
Chairman and CEO, IBM
Next Step: Quality Improvement
Plan, Do, Study, Act
Administer the PC-‐PAL
Meet with staff, residents
Jointly plan for change
Administer the PC-‐PAL
Con'nuous QI
Begin at the Beginning
Well-‐being and Belonging (18 items)
-‐ It feels like home. -‐ MealDmes are pleasant and
enjoyable for me. -‐ Overall, I am saDsfied with the
acDviDes here and how they are provided.
Individualized Care and Services (12 items)
-‐ Caregivers, administraDve, and other staff address me using my preferred name.
-‐ I am involved in planning my care and services.
-‐ I have the privacy I want when I receive my medicaDons.
Addi9onal Informa9on
Zimmerman et al. (2015). A Measure of Person-‐Centered Prac'ces in Assisted Living: The PC-‐PAL. AMDA -‐ The Society for Post-‐Acute and Long-‐Term Care Medicine 16 (2): 132-‐137.