PC-PAL: Using Metrics to Measure Person-Centered Practices

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?


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


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



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


Personal life


Cars Honda Toyota

Shoe size

Health

-‐  Func9on -‐  Illnesses -‐  Energy

Work life


Personal life


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)









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.


-‐  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.









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





Scoring the PC-‐PAL









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









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.

Documents

PC-PAL: Using Metrics to Measure Person-Centered Practices