The PerCEN Study: Supporting client and care outcomes in ... · Supporting client and care outcomes...
Transcript of The PerCEN Study: Supporting client and care outcomes in ... · Supporting client and care outcomes...
The PerCEN Study
Supporting client and
care outcomes in the
residential dementia care
setting.
Lynn ChenowethProfessor of Aged & Extended Care
NursingUniversity of Technology Sydney
andSouth Eastern Sydney Local Area Health
Service, Australia
Inspiration from positive findingswith the CADRES STUDY and
curiosity about some conflictingfindings
Chenoweth, L. King, M., Jeon, Y-H., Stein-Parbury, J.,Brodaty, H., Haas, M., Norman, R & Luscombe, G.2009 Caring for Aged Dementia Care Residentsstudy (CADRES): a cluster-randomised trial of Person-Centred Care in dementia.Lancet Neurology, 8 (4): 317-325.
Effect of PCC on Agitation (CMAI)29 symptoms/signs of agitation
Adjusted Model
30
35
40
45
50
55
60
CMAIhigher
is worse
DCM 49.9 47.9 46.5
PCC 49.5 43 38.6
UC 47 55.5 54.5
PRE POST FU
SE (means) ~ 5.2, CI +/- ~10
Full scale range: 29-203
Obs range: 29 – 119
P values
Tm’t x tm 0.0013
Time trends
PCC 0.0037
DCM 0.026
PCC Significant group by time interaction
Effect of PCC on Function and Psychiatric symptoms(NPI)
Significant improvement
Appetite & eating disorders, dis-inhibition, sleep quality (0.015)
Improvement
Delusions (p=0.04)
Anxiety (p=0.07)
Irritability/lability (p=0.09)
Elation/euphoria (p=0.02)
5
Cost-effectiveness of PCC in relation toagitation reduction at 8 month Follow-Up
Incremental Cost per site(relative to UC)
Incremental Outcomeper person(improvement inCMAI) (rel. to UC)
DCMapproach
PCC alone
10.9 18.4
$29,600
$17,700
Effect of PCC on Staff BehaviourSignificant improvement over time (0.001)
BUT NO SIGNIFICANTIMPROVEMENT IN RESIDENT
QUALITY OF LIFE
Further questions arising fromCADRES findings
1. Instruments- are they sufficientlysensitive for use in severe dementia?eg. QUAL-ID, NPI
2. PCC components need independentexamination, eg. care structures,contexts and practices
Constructs requiring further examination
Subjective experiences of the person with dementia
- clinical, social and psychological status, behavioural
responses to the psychosocial environment
Socio-cultural context of care situation
- care setting orientation, systems, policies, workforce,
leadership, care schedules and care environment
Interactional environment
- staff’s abilities, orientation, preparation and
demonstration of dementia care practice
The PerCEN studyPerson-centred environment and
care for residents with dementia. Acost effective way of improvingcare and resident well-being ?
Funding: NHMRC ($1.47m)
The PerCEN study team
InvestigatorsLynn Chenoweth, Ian Forbes, Jane Stein-Parbury-UTS/SESIAHSMadeleine King and Yun-Hee Jeon-USydRichard Fleming-UoWHenry Brodaty-UNSW/POWHMarion Haas and Richard Norman -UTS-CHEREAssociate InvestigatorsVictoria Traynor- UoWLaurel Hixon- UNSWShankar Sankaran-UTSStatisticiansGeorgina Luscombe-USyd, Patsy Kenny-UTS-CHEREResearch StudentsChanel Burke and Veronica Krakowzski (UTS), Ron Smith (UOW)Research AssistantsJanet Cook, Leonie Tinslay, Lesley Pope, Lynn Silverstone, Fiona Tait
To determine:1. the effect of person-centred care (PCC) on the quality of life(QOL) of aged care residents with dementia;2. the effect of modifying the dementia care environment
(person-centred environment (PCE) on the QOL of aged careresidents with dementia;
3. the combined effect of PCC and PCE on resident QOL;4. the effect of PCC on quality of care for aged care residents with
dementia5. the effect of PCE on quality of care6. the combined effect of PCC and PCE on quality of care7. cost-benefits of PCC and PCE in relation to resident QoL
PerCEN Study Aims
PerCEN study Design
Pre/post/follow-up, 3 year randomised,blinded, cluster control design.
Four intervention arms (PCC, PCE, PCC+PCE,UC+UE) randomly allocated to 39 residentialdementia care units which had room forimprovement in care systems, care practicesand care environments.
ResearchResearchLocationsLocations
NewcastleSydneyWollongong
UrbanRegionalRural
15
Residential High Care Dementia Units SAMPLE(n=39)
– located in urban & rural NSW Sydney, Australia
– providing high-care residential services to persons withdementia
– funded by the Australian Government and user co-contributions
– accredited (last 12 months) by the Australian ResidentialCare Accreditation Agency
– similar management structures, staffing ratios & staffmix
– similar service provision - nursing care, therapy &recreation programs
– serviced by GPs & other specialist health staff
Dementia care unit inclusion screen
Person-Centred Environment and Care Assessment Tool(PCECAT) (Burke et al, 2010) was used to assess ‘room forimprovement’ in service structure and culture, care quality andcare environment quality
PCECAT scores were converted to RFI scores, for each item
PCECAT SCORES ==> Room For Improvement (RFI) scores
0 = Not even considered ==> 3 = a lot of room for improvement1= Have thought about ==> 2 = quite a bit of room for improvement2 = Sometimes used ==> 1 = some room for improvement3 = Used a great deal ==> 0 = no room for improvement4 = Fully implemented ==> 0 = no room for improvement
Room for Improvement in CARE scores (min 0, max 31)n= 89 dementia care units
Room for Improvement in ENVIRONMENT scores (min 0,max 28) n=89 dementia care units
19
Resident sample (n=602)
Eligibility criteria– Consented-self and/or proxy– residential aged care permanent placement– medical diagnosis/record of dementia– 60+ years– classified as requiring High Care services with the Aged
Care Funding Instrument in 13 areas of cognitive,physical and psychosocial functioning
Exclusion criteria– serious co-morbidities, precluding engagement in normal
daily activities and social life of the care unit (eg. cardiacor respiratory failure, end-stage illness, unremittingpain/distressing physical symptoms)
– Unstable/ florid mental illness– Non-consent
Resident Measurement
Baseline
• Demographics, clinical information incl. drug/alcohol history,
co-morbidities, all prescribed and over counter medicines
• Aged Care Funding Instrument (ACFI) 13 Activities of Daily Living
category scores, including cognition, continence, behaviour and
depression (Department of Health & Aged Care 2006)
• Global Deterioration Scale in dementia (GDS) (Reisberg 2000)
Resident Measurement
Outcomes• Cohen-Mansfield Agitation Inventory (CMAI)-Long
Form (Cohen-Mansfield & Billig 1986)• Dementia Quality of Life (DEMQOL) and DEMQOL-
Proxy (Smith et al. 2005).• Cornell Scale for Depression in Dementia (CSDD)
(Alexopoulos et al. 1988)• Emotional Responses in Care (ERIC) (Fleming at al.
2009)• Accidents & injuries & hospital admissions related to
BPSDs• Psychotropic medicine use-frequency and dose
Care practices Measurement
Staff Knowledge and skill- Approaches to Dementia Questionnaire(ADQ) (Lintern, & Woods, 1996)
Care qualityQuality of Interactions Schedule (QUIS)(Dean, Proudfoot & Lindesay 1993)
Recreation activity-type and frequency per weekPhysical restraint type, frequency and length of time employed
Person-Centred Care (PCC) practicesPCC Dose and Duration scoresPCC Champion Resident Care Planning/Outcome reportsManager, Staff and Family visitor Interview Reports
Care Environment Measurement
Environment quality
Environmental Assessment Tool (EAT) (Fleming, Forbes &Bennett 2005)
Person-Centred Environment ApplicationCare Manager and Staff Interview ReportsFamily visitor Interview ReportsPCE Dose and Duration scores
Person-Centred Care Study Intervention
Staff education/training in 10 randomly allocated sites after baseline datacollected
5 full day PCC off-site interactive group education by PCC experts for 4-5PCC Champions (RNs, AINs, RAO)
10 -20 hours of on-site PCC training for PCC Champions per site over threemonths
Assistance and guidance in PCC assessment and care planning for residentswith need-driven behaviour on-site
Education and training based on Kitwood ‘s (1997 principlesand approaches.
Loveday, B., Bowe, B. and Kitwood, T. 1988“Improving Dementia Care: A Resource for Training andProfessional Development.” Bradford Dementia Group.
Person-Centred Environment Intervention
• Assessment of environment’s ability to meet the following needs indementia (EAT and SEAT instruments):
Sense of safety & security in living spaces
Feeling comfortable and familiar
Providing for closeness and privacy with trusted others
Free from frightening and unknown stimulation
Abundant with interesting and recognisable stimulation
Accessible for wandering & exploring & personal interaction
Having access wider community happenings and people• Negotiation and approval to proceed with 1-2 recommended environment
improvements with Facility executive, board of governors, managers andstaff
• Opened up indoor and/or outdoor living space; added comfortable
furnishing; changed wall/door colours; improved room design; added
cues for way-finding; outdoor shading, chairs and areas of interest
Data Analysis procedures
Three assessment pointsPre, post (10 months), Follow-up (18 months)
Project staff and investigators BLINDED to intervention
DescriptiveChi-square tests – categorical variables at baselineOne way ANOVA - continuous variables
Hierarchical regression modelsPre-test Outcomes – covariates, adjusting for baseline group variationsPredicted total sample mean and 95% confidence interval calculated for each
outcomeRandom Intercept - blocked by RACF nested in Intervention GroupsEstimation – Restricted Maximum LikelihoodLikelihood Ratio Tests - inclusion of random effectsAccounted for clustering within facility and adjusted for pre-test level of
dependent variable
Potential resident covariates measured at baseline
Age, gender, length of stay, psychiatric history, alcohol history,GDS (cognition), CSDD (depression) in CMAI (behaviour) andDEMQOL (quality of life) models.
Significant Covariates identified
CSDD and CMAI (CSDD retained in CMAI model)
Pre-intervention level-statistically significant in each model(p<0.0001)
Available data –Pre-test to Follow-up
DCUs 39 (pre), 36 (post), 36 (follow-up)
Residents 601 (pre), 416 (post), 296 (follow-up)
PCC 37% lost PCE 32% lost PCC+PCE 21% lost UC+UE 32% lost
No difference in CMAI, CSDD and DEMQOL-Proxy scores forresidents lost to follow-up
Costs to be considered against improvements in mainresident outcomes
• Education, training and supervision in PCC• Care and management staff time spent implementing PCC• Assessment, planning and approval procedures for PCE• Material cost and contractors time spent implementing PCE• Psychiatric assessments or consultations for behaviour• Resident Incidents (including any flow-on direct costs of
medical care due to incidents leading to injury, e.g. falls)• Staff Incidents, Sick Leave, and staff turnover (e.g.
recruitment costs, additional cost of locum care staff)• Hospitalisations (only those due to physical injuries attributed
to dementia-related behaviour)
Economic analysis plan
STUDY FINDINGS
Main ResidentOutcomes
Significant reductions in CMAI scores with time
UC/UEn=95
PCCN=98
PCEN=105
PCC+PCEN=118
p
CMAI
Pre mean(SD)
47.4(18.0)
67.1(25.7)
63.0(25.7)
55.3(17.0)
<0.0001
Post meanchange(SD)
1.8(27.7)
-11.8(27.6)
-11.1(21.9)
1.1(28.5)
<0.0001
% decrease 51 70 65 51
Significant reductions in CSDD scores with time
UC/UEn=95
PCCN=98
PCEN=105
PCC+PCEN=118
p
CSDD
Pre (SD) 8.9 (6.4) 12.0 (6.6) 9.7 (5.5) 9.4 (5.9) 0.002
Post meanchange(SD)
1.1(6.7)
-1.2(8.5)
-1.3(6.7)
0.9(8.5)
0.04
% decrease 40 48 58 47
Increases in DEMQOL scores (QoL) with time
UC/UEn=95
PCCN=98
PCEN=105
PCC+PCEN=118
p
DEMQoLPre av. score(1-4)
n= 35
3.10
n= 20
3.15
n=21
3.22
n=26
3.32
Post av score(1-4)
3.00 3.32 3.20 3.23
DEMQoLProxy
n=95 n=98 n=105 n=118
Pre mean (SD)range 32-128
100.7(12.3)
97.6(12.7)
101.0(10.8)
101.1(11.8)
0.12
Post meanchange (SD)
-2.65(16.6)
4.4(11.2)
-0.5(13.7)
2.0(11.6)
0.002
% Increase 47 62 48 55
Post-test Adjusted mean scores CMAI, DEMQoL Proxy, CSDDnon-significant improvements (p=0.005)
UC/UEn=95
PCCn=98
PCEn=105
PCC+PCE p
CMAI
Mean 50.34 54.32 50.29 57.65 0.72
DEMQoLProxy
Mean 98.5 102.37 100.36 102.78 0.40
CSDD
Mean 10.09 10.97 8.27 10.54 0.66
Main Resident Findings
Pre-Test
CMAI and CSDD –significant group differences
Post-test -unadjusted
CMAI, CSDD, DEMQoL proxy – significant groupimprovements for PCC and PCE
Post-test Adjusted
CMAI, CSDD, DEMQoL proxy – non significantgroup improvements for PCC, PCE, PCC+PCE
Additional Resident Findings
Cognition(GDS) decreased significantly
Functional ability (ACFI-ADL) improved for PCC,PCE and PCC+PCE sites
Prescription medicines for all illnesses -very high
(av. 15)- no changes
Accidents/injuries/treatments/hospitalisationrelating to behaviour – very low- no changes
Emotional responses to care (ERIC) positiveimprovements for PCC, PCE and PCC+PCE sites
Duration and Strength of feelings
0
1
2
3
4
5
Pleasure Score
Pleasure Strength
Affection Score
Affection Strength
Helpfulness Score
Helpfulness Strength
No Response ScoreAnger Score
Anger Strength
Anxiety Score
Anxiety Strength
Pain Score
Pain Strength
Emotional Response
0%
20%
40%
60%
80%
100%
Pre Test
Positive
Pre Test
Negative
Post Test
Positive
Post Test
Negative
Follow Up
Positive
Follow Up
Negative
Pe
rce
nta
ge UC/UE
PCC
PCE
PCC/PCE
Care quality findings
PCC dose and duration scores - wide range (32-92)(2 RACFs did not proceed with PCC)
PCC implemented for approx. 10 residents in eachRACF
Restraint verbal and physical – very low Recreation activities - No change Quality of care interactions (QUIS) improved for PCE
sites and PCC+PCE sites Non-engaged (neutral) staff -to-resident interactions
(QUIS) reduced
Care Quality
0%
20%
40%
60%
80%
100%
Pre Test
Positive
Pre Test
Negative
Post Test
Positive
Post Test
Negative
Follow Up
Positive
Follow Up
Negative
Pe
rce
nta
ge UC/UE
PCC
PCE
PCC/PCE
Care Environment Findings
PCE dose and duration scores- wide range
(0-90) (5 RACFs did not implement PCE)
Environment quality (EAT) improved overtime
Residents use of environment improvedover time (Manager, staff, visitorinterviews)
Data Analyses in process
• Interviews with care managers, direct carestaff, PCC Champions, family visitors
• PCECAT scores for organisational culture andstructures that best support PCC and PCE
• Staff outcome data
• Cost analyses of PCC and PCE inputs againstresident outcomes
• Research field notes - reflections of caremanager, staff and resident interactions,cooperation and mood of the DCU
Lessons learnt from PerCEN
Effectiveness – for PCC and PCE to be taken up weneed to convince executive, managers and staff ofits potential value for them, the organisation andthe residents.
Feasibility – PCC and PCE must be acceptable andable to be implemented by addressingresident/family preferences, staff skills andexperience, resource availability. PCE needsadequate time to be approved and implemented.
Applicability – PCC and PCE must be suitable forpartIcular cultural contexts, need to be adaptedfor the setting, circumstances, leadershipcapabilities and levels of executive support.
Successful research evidence influence strategy
Vision Skills Incentives Action PlanResources = CHANGE+ + + +
Skills Incentives Action PlanResources = CONFUSION+ + +
Vision Incentives Action PlanResources = ANXIETY+ + +
Vision Skills Action PlanResources = RESISTANCE+ + +
Vision Skills Incentives Action Plan = FRUSTRATION+ + +
Vision Skills Incentives Resources = TREADMILL+ + +
(Knoster, T. (1991) Presentation at TASH Conference, Washington, D.C.)
PerCEN Study Protocolpublication
Chenoweth, L., King, M., Stein-Parbury., Jeon, Y-H.,Brodaty, H., Haas, M., Forbes, I., Fleming, R.,Luscombe, G. 2010 Study protocol of a RandomisedControlled Group Trial of client and care outcomesin the residential dementia care setting.
Worldviews on Evidence-Based Nursing.
DOI: 10.1111/j.1741-6787.2010.00204.x