The PerCEN Study. Supporting client and care outcomes in the residential dementia care setting.

Transcription

1 The PerCEN Study Supporting client and care outcomes in the residential dementia care setting. Lynn Chenoweth Professor of Aged & Extended Care Nursing University of Technology Sydney and South Eastern Sydney Local Area Health Service, Australia

2 Inspiration from positive findings with the CADRES STUDY and curiosity about some conflicting findings Chenoweth, L. King, M., Jeon, Y-H., Stein-Parbury, J., Brodaty, H., Haas, M., Norman, R & Luscombe, G Caring for Aged Dementia Care Residents study (CADRES): a cluster-randomised trial of Person- Centred Care in dementia. Lancet Neurology, 8 (4):

3 Effect of PCC on Agitation (CMAI) 29 symptoms/signs of agitation CMAI higher is worse Adjusted Model Full scale range: Obs range: PRE POST FU DCM PCC UC SE (means) ~ 5.2, CI +/- ~10 P values Tm t x tm Time trends PCC DCM PCC Significant group by time interaction

4 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 to agitation reduction at 8 month Follow-Up Incremental Cost per site (relative to UC) $29,600 DCM approach $17,700 PCC alone Incremental Outcome per person (improvement in CMAI) (rel. to UC) 5

6 Effect of PCC on Staff Behaviour Significant improvement over time (0.001)

7 BUT NO SIGNIFICANT IMPROVEMENT IN RESIDENT QUALITY OF LIFE

8 Further questions arising from CADRES findings 1. Instruments- are they sufficiently sensitive for use in severe dementia? eg. QUAL-ID, NPI 2. PCC components need independent examination, eg. care structures, contexts and practices

9 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

10 The PerCEN study Person-centred environment and care for residents with dementia. A cost effective way of improving care and resident well-being? Funding: NHMRC ($1.47m)

11 The PerCEN study team Investigators Lynn Chenoweth, Ian Forbes, Jane Stein-Parbury-UTS/SESIAHS Madeleine King and Yun-Hee Jeon-USyd Richard Fleming-UoW Henry Brodaty-UNSW/POWH Marion Haas and Richard Norman -UTS-CHERE Associate Investigators Victoria Traynor- UoW Laurel Hixon- UNSW Shankar Sankaran-UTS Statisticians Georgina Luscombe-USyd, Patsy Kenny-UTS-CHERE Research Students Chanel Burke and Veronica Krakowzski (UTS), Ron Smith (UOW) Research Assistants Janet Cook, Leonie Tinslay, Lesley Pope, Lynn Silverstone, Fiona Tait

12 PerCEN Study Aims 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 care residents 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 dementia 5. the effect of PCE on quality of care 6. the combined effect of PCC and PCE on quality of care 7. cost-benefits of PCC and PCE in relation to resident QoL

13 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 residential dementia care units which had room for improvement in care systems, care practices and care environments.

14 Urban Regional Rural Newcastle Sydney Wollongong Research Locations

15 Residential High Care Dementia Units SAMPLE (n=39) located in urban & rural NSW Sydney, Australia providing high-care residential services to persons with dementia funded by the Australian Government and user cocontributions accredited (last 12 months) by the Australian Residential Care Accreditation Agency similar management structures, staffing ratios & staff mix similar service provision - nursing care, therapy & recreation programs serviced by GPs & other specialist health staff 15

16 Dementia care unit inclusion screen Person-Centred Environment and Care Assessment Tool (PCECAT) (Burke et al, 2010) was used to assess room for improvement in service structure and culture, care quality and care 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 improvement 1= Have thought about ==> 2 = quite a bit of room for improvement 2 = Sometimes used ==> 1 = some room for improvement 3 = Used a great deal ==> 0 = no room for improvement 4 = Fully implemented ==> 0 = no room for improvement

17 Room for Improvement in CARE scores (min 0, max 31) n= 89 dementia care units

18 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. cardiac or respiratory failure, end-stage illness, unremitting pain/distressing physical symptoms) Unstable/ florid mental illness Non-consent 19

20 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)

21 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

22 Care practices Measurement Staff Knowledge and skill- Approaches to Dementia Questionnaire (ADQ) (Lintern, & Woods, 1996) Care quality Quality of Interactions Schedule (QUIS) (Dean, Proudfoot & Lindesay 1993) Recreation activity-type and frequency per week Physical restraint type, frequency and length of time employed Person-Centred Care (PCC) practices PCC Dose and Duration scores PCC Champion Resident Care Planning/Outcome reports Manager, Staff and Family visitor Interview Reports

23 Care Environment Measurement Environment quality Environmental Assessment Tool (EAT) (Fleming, Forbes & Bennett 2005) Person-Centred Environment Application Care Manager and Staff Interview Reports Family visitor Interview Reports PCE Dose and Duration scores

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25 Person-Centred Care Study Intervention Staff education/training in 10 randomly allocated sites after baseline data collected 5 full day PCC off-site interactive group education by PCC experts for 4-5 PCC Champions (RNs, AINs, RAO) hours of on-site PCC training for PCC Champions per site over three months Assistance and guidance in PCC assessment and care planning for residents with need-driven behaviour on-site Education and training based on Kitwood s (1997 principles and approaches. Loveday, B., Bowe, B. and Kitwood, T Improving Dementia Care: A Resource for Training and Professional Development. Bradford Dementia Group.

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28 Person-Centred Environment Intervention Assessment of environment s ability to meet the following needs in dementia (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 and staff 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

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31 Data Analysis procedures Three assessment points Pre, post (10 months), Follow-up (18 months) Project staff and investigators BLINDED to intervention Descriptive Chi-square tests categorical variables at baseline One way ANOVA - continuous variables Hierarchical regression models Pre-test Outcomes covariates, adjusting for baseline group variations Predicted total sample mean and 95% confidence interval calculated for each outcome Random Intercept - blocked by RACF nested in Intervention Groups Estimation Restricted Maximum Likelihood Likelihood Ratio Tests - inclusion of random effects Accounted for clustering within facility and adjusted for pre-test level of dependent variable

32 Potential resident covariates measured at baseline Age, gender, length of stay, psychiatric history, alcohol history, GDS (cognition), CSDD (depression) in CMAI (behaviour) and DEMQOL (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 for residents lost to follow-up

33 Economic analysis plan Costs to be considered against improvements in main resident 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)

34 STUDY FINDINGS Main Resident Outcomes

35 Significant reductions in CMAI scores with time UC/UE n=95 PCC N=98 PCE N=105 PCC+PCE N=118 p CMAI Pre mean (SD) 47.4 (18.0) 67.1 (25.7) 63.0 (25.7) 55.3 (17.0) < Post mean change(sd) 1.8 (27.7) (27.6) (21.9) 1.1 (28.5) < % decrease

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37 Significant reductions in CSDD scores with time UC/UE n=95 PCC N=98 PCE N=105 PCC+PCE N=118 p CSDD Pre (SD) 8.9 (6.4) 12.0 (6.6) 9.7 (5.5) 9.4 (5.9) Post mean change(sd) 1.1 (6.7) -1.2 (8.5) -1.3 (6.7) 0.9 (8.5) 0.04 % decrease

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39 Increases in DEMQOL scores (QoL) with time UC/UE n=95 PCC N=98 PCE N=105 PCC+PCE N=118 p DEMQoL Pre av. score (1-4) Post av score (1-4) n= 35 n= 20 n=21 n= DEMQoL Proxy Pre mean (SD) range Post mean change (SD) n=95 n=98 n=105 n= (12.3) (16.6) 97.6 (12.7) 4.4 (11.2) (10.8) -0.5 (13.7) % Increase (11.8) 2.0 (11.6)

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41 Post-test Adjusted mean scores CMAI, DEMQoL Proxy, CSDD non-significant improvements (p=0.005) UC/UE n=95 PCC n=98 PCE n=105 PCC+PCE p CMAI Mean DEMQoL Proxy Mean CSDD Mean

42 Pre-Test Main Resident Findings CMAI and CSDD significant group differences Post-test -unadjusted CMAI, CSDD, DEMQoL proxy significant group improvements for PCC and PCE Post-test Adjusted CMAI, CSDD, DEMQoL proxy non significant group improvements for PCC, PCE, PCC+PCE

43 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/hospitalisation relating to behaviour very low- no changes Emotional responses to care (ERIC) positive improvements for PCC, PCE and PCC+PCE sites

44 Duration and Strength of feelings Pain Strength Pleasure Score 5 4 Pleasure Strength Pain Score 3 Affection Score 2 Anxiety Strength 1 0 Affection Strength Anxiety Score Helpfulness Score Anger Strength Helpfulness Strength Anger Score No Response Score

45 Emotional Response Percentage 100% 80% 60% 40% 20% UC/UE PCC PCE PCC/PCE 0% Pre Test Positive Pre Test Negative Post Test Positive Post Test Negative Follow Up Positive Follow Up Negative

46 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 each RACF 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

47 Care Quality Percentage 100% 80% 60% 40% 20% UC/UE PCC PCE PCC/PCE 0% Pre Test Positive Pre Test Negative Post Test Positive Post Test Negative Follow Up Positive Follow Up Negative

48 Care Environment Findings PCE dose and duration scores- wide range (0-90) (5 RACFs did not implement PCE) Environment quality (EAT) improved over time Residents use of environment improved over time (Manager, staff, visitor interviews)

49 Data Analyses in process Interviews with care managers, direct care staff, PCC Champions, family visitors PCECAT scores for organisational culture and structures that best support PCC and PCE Staff outcome data Cost analyses of PCC and PCE inputs against resident outcomes Research field notes - reflections of care manager, staff and resident interactions, cooperation and mood of the DCU

50 Lessons learnt from PerCEN Effectiveness for PCC and PCE to be taken up we need to convince executive, managers and staff of its potential value for them, the organisation and the residents. Feasibility PCC and PCE must be acceptable and able to be implemented by addressing resident/family preferences, staff skills and experience, resource availability. PCE needs adequate time to be approved and implemented. Applicability PCC and PCE must be suitable for particular cultural contexts, need to be adapted for the setting, circumstances, leadership capabilities and levels of executive support.

51 Successful research evidence influence strategy Vision Skills Incentives Resources Action Plan = CHANGE Skills Incentives Resources Action Plan = CONFUSION Vision Incentives Resources Action Plan = ANXIETY Vision Skills Resources Action Plan = RESISTANCE Vision + Skills + Incentives + Action Plan = FRUSTRATION Vision + Skills + Incentives + Resources = TREADMILL (Knoster, T. (1991) Presentation at TASH Conference, Washington, D.C.)

52 PerCEN Study Protocol publication Chenoweth, L., King, M., Stein-Parbury., Jeon, Y-H., Brodaty, H., Haas, M., Forbes, I., Fleming, R., Luscombe, G Study protocol of a Randomised Controlled Group Trial of client and care outcomes in the residential dementia care setting. Worldviews on Evidence-Based Nursing. DOI: /j x