CART Community Assessment of Risk Tool

CART Community Assessment of Risk Tool 0 3-0 7. 2 0 1 2 D E M E N T I A L E A R N I N G E V E N T M U L L I N G A R PA R K H O T E L T U E S D AY 3 R D J U LY 2 0 1 2 D R R Ó N Á N O C A O I M H P R O F D. W I L L I A M M O L L O Y

Overview 1. Healthcare in our Community 2. Risk -What is it?, Why measure it?, What to measure? 3. Dementia & Risk 4. The CARTS Programme 5. The CART 6. CART development -IRR, Demographic analysis to date, Predicting outcomes.

1. Healthcare in our community Melbourne District Nursing Society 1904

1. Healthcare in our community District nurses- Public Health Nurses (PHNs). The first PHN -Mrs Mary Robinson. Liverpool 1863. City divided into 18 districts. 1876 Lady Plunkett founded St Patrick s Home for District Nurses in Dublin. William Rathbone

Healthcare in our community The world of the PHN: Ireland 2012 Current system. Independent General Practitioners. Guided by assistant directors. Personal contact...in the home/community. Assessment: Standardised tools: -Mental Test Score. -Mini-Mental Test Score. -Barthel Score. Little unified assessment or conclusion. Few management pathways.

Healthcare in our community The Risk Register HSE guidance 2009. Capture Information & Manage Risk. Left up to each PHN Sector to devise a template. On the ground... Elderly Registers. O Caoimh et al IGS/IJ Med Sci 2012

Healthcare in our community We performed: Retrospective review of an older adult register. One PHN sector. Suburban-rural population. Snap-shot over 1 week Sept 2011. Low risk...routine surveillance. High risk...those on the Risk Register. Adjudged as High risk by PHNs based on their own assessment.

Healthcare in our community 783 individuals over 65 being followed by PHNs in 1 sector. 20% of the population, over 65 years (CSO 2006). Median age was 80 (IQR 9). 64% female. 7% (n=55) were identified as high risk. 1.4% of the population in the sector over 65. High risk of what?

Healthcare in our community Cause of Risk: 55%(n=30), had more than one risk Social need: most common=34( 64%). Social need = living alone with little support Next most common: Physical disability n=20 (36% ). The most frequent combination was social need with cognitive impairment, n=8(15%).

2. Risk

Understanding Risk Risk is the chance an event will occur in the future It is the amount of potential harm that can be expected to occur at a set period of time, due to a specific Measurement is based upon individual risk factors. HSE ICC IMPACT (OR AREA OF IMPACT) CAUSAL FACTOR CONTEXT

Understanding Risk Risk Matrix Certain Likely Possible Unlikely Rare Minimal Mild Moderate Severe Extreme Minimal Risk Low Risk Medium Risk High Risk Extreme Risk

What to measure? In healthcare we traditionally measure: Adverse Outcomes -Institutionalisation -Hospitalisation -Death Need to include: Quality of Life Cost benefit analysis

Dementia in Ireland FOUR MILLION CITIZENS 440,000 AGED OVER 65 44,000 WITH DEMENTIA BY 2050 THERE WILL BE 90,000-120,000 CASES POPULATION IS AGEING: 2006-11% OVER 65 2041-22% (1.4 MILLION) ref: McGill, P. Illustrating Ageing in Ireland North and South: Key Facts and Figures. Belfast: Centre for Ageing Research and Development in Ireland, 2010

Dementia "Dementia is the most significant health issue facing older people in Ireland. Affects at least one family in every street around the country. Affects young & old Prof Diarmuid O Shea.

3. Dementia & Risk Challenges in diagnosing & assessing dementia. - How to choose appropriate cognitive & functional screening tools. - When is it dementia? Normal <> Mild Cognitive Impairment (MCI) <> Mild Dementia - What separates people who live well with dementia from those that do not? - What does a typical person with dementia behave like...demographically?

ROC curve demonstrating sensitivities and specificities of the Qmci, ABCS 135 and SMMSE in differentiating (a). MCI and (b) Dementia O Caoimh R et al. Age Ageing 2012;ageing.afs059 The Author 2012. Published by Oxford University Press on behalf of the British Geriatrics Society.

? Orientation Registration Recall Clock Drawing Verbal Fluency Logical Memory R O Caoimh, D W Molloy 2012

R O Caoimh, D W Molloy 2011

4.The CARTS Programme Goal: Develop a scoring tool that will: 1. Screen older adults in the community: -Quick -Objective -Reproducible 2. Predict outcomes: -Institutionalisation -Hospitalisation -Death 3. Help develop integrated management strategies:

Why the CARTS Programme? Need... A common language between primary and secondary care. Prioritise health care delivery in the community Comprehensive community assessment. Rationale for interventions we use and a framework to allow new ones develop. a complicated but short tool???

5. The CART CARST Screening tool. CART Uses 1. Triage tool 2. Diagnostic tool 3. Evaluation tool

CARST Community Assessment of Risk Screening Tool Instructions Step 1 Step 2 Step 3 Step 4 Domain Concern Status Care Network Risk If NO concern for a Domain, move on to the next Domain. Finally, complete the Global risk score at the end. Is there concern about issues in this domain? (Circle Yes or No) Circle the present severity of the concern 1. Mild. 2. Moderate. 3. Severe. Can the caregiver network manage this concern? 1.Can manage 2.Carer strain 3.Some gaps 4.Cannot manage 5.Absent/liability N/A. Not required Risk of NH in 6/12 because of each issue without change 1.Minimal/rare 2.Low/unlikely 3. Moderate/possible 4.High/likely 5.Extreme/certain 1. Mental State Y N 1 Mild 2 Moderate 3 Severe 1 2 3 4 5 N/A 1 2 3 4 5 2. ADLs Y N 1 Mild 2 Moderate 3 Severe 1 2 3 4 5 N/A 1 2 3 4 5 3. Medical State Y N 1 Mild 2 Moderate 3 Severe 1 2 3 4 5 N/A 1 2 3 4 5

CART Orientation Issues Status Care Network Risk Concern Domain 1. Step 1 Step 2 Step 3 Step 4 Issues Concern Status Care Network Risk Mental State Is there concern about issues in this domain? (Circle Yes or No) Circle the present severity of the concern 1. Mild. 2. Moderate. 3. Severe. Y N If NO concern, complete the Overall Risk & move on to next domain, 2. If YES complete each section below Can the caregiver network manage this concern? 1.Can manage 2.Carer strain 3.Some gaps 4.Cannot manage 5.Absent/liability N/A. Not required Risk of NH in 6/12 because of each issue without change 1.Minimal/rare 2.Low/unlikely 3. Moderate/possible 4.High/likely 5.Extreme/certain A. Thinking & Reasoning Y N If NO concern, move on to next section until domain is complete Cognition Y N 1 2 Mild dementia, (typically SMMSE 24-21). Moderate dementia (typically SMMSE of 20-10). 1 2 3 4 5 N/A 1 2 3 4 5 3 Severe dementia, (typically SMMSE of < 10). Insight & Executive function Y N 1 2 Some loss of insight, difficulty planning Greater loss of awareness, diminished capacity. 1 2 3 4 5 N/A 1 2 3 4 5 3 No insight/capacity (cognitive/function),unaware of self/ health.

CART Orientation Global Risk Score A. Institutionalization (Discharge to Long-term care {nursing home} within 1year. 1 Minimal Rare 2 Low Unlikely 3 Moderate Possible 4 High Likely 5 Extreme Certain B. Prolonged admission or readmission (Within 1 year) 1 Minimal Rare 2 Low Unlikely 3 Moderate possible 4 High Likely 5 Extreme Certain C. Death (Within 1 year) 1 Minimal Rare 2 Low Unlikely 3 Moderate Possible 4 High Likely 5 Extreme Certain

CART Risk Equation Risk = Concern + Status (of the Concern) Care Network Provided the Care Network is unchanged and with consideration for the expected course of the patient. Outcomes Risk of Institutionalisation, Hospitalisation, Death at one year.

CART Pathway Risk, Capacity & the Decision To Institutionalise. Assess the patient Concern Care Deficit Domain Section Issue Yes No Managed by Care Network Minimal Risk Yes (Can be met) No (Cannot be met) Low Risk At Risk Has Capacity Lacks Capacity Wants to remain at home & accepts the risk Others decide about decision to stay at home Copyright,R O Caoimh, D W Molloy 2011

6. CART Development Now 1. Inter-rater reliability 2. Validity The Future 3. External Validity 4. RCT using intervention pathways tailored to risk.

CART Inter-rater reliability (IRR) Statistical analysis of degree of agreement among raters. Usually assess two raters with several cases. If little agreement either the scale is defective or the raters need to be trained/ re-trained.

CART IRR Sept 2011-March 2012 we began the CART training programme with PHN in 2 sectors. Used 3 standardised cases -High risk -Medium risk -Low risk After training we tested IRR...the degree to which PHNs and other healthcare professionals were able to determine the level of risk using the tool.

CART IRR Methods: 115 healthcare workers (Ireland & Canada). Cronbachs` alpha coefficient (α) measured internal consistency (for the different parts of the tool). IRR was determined using Fleiss` Kappa(Κ). Results: Excellent internal consistency for the CART subsections,α=0.94. Trained PHNs reliably predicted risk of institutionalisation with almost perfect agreement, Κ=0.86, Perfect Κ=1.0 for hospitalisation. Untrained raters had only moderate agreement for institutionalisation,(κ=0.54) & hospitalisation,(κ=0.52).

CART IRR Conclusion Internal consistency and IRR for the CART was excellent. CART training increases IRR suggesting that it is the tool rather than the cases alone that determines the risk rating.

CART Demographic Analysis Validity CART performed by trained PHNs on their own cases. Results buried...outcomes/predictions based upon the CART to be analysed at 6/12 and 12/12.

CART Demographic Analysis Sample: 4oo cases assessed. Median Age 80 years, IQR 10. No significant age diff between males & females (p=0.1)

Age distribution; n=400

CART Demographic Analysis Gender Male: n=146 (36.5%) Female: n=254 (63.5%) Living Alone / with Someone Alone n=192 (50%) Male: n=57 (41.9%) Female: n=135 (54.7%)

With Someone Alone Living alone according to gender, n= 192

CART Demographic Analysis Functional Status: Barthel Score (Activities of Daily Living): Median Barthel : 17/20, IQR 6. Male: Median Barthel; 18. Female: Median; 17. No statistically significant difference, P=0.56.

100 90 80 70 60 50 40 30 Spearmans rho, r=-0.157, p-0.002. 20 10 0 0 5 10 15 20 Scatter plot demonstrating correlation between age & function (Barthel Index), n=400

CART Demographic Analysis Dementia Diagnosis of dementia (all subtypes & according to PHN knowledge & notes). Dementia N=59: Mean age 83, SD 6.8. 15% of the total sample. Normal cognition N=341: Mean 79,SD 7.33. Dementia subjects were: Significantly older, p=0.003. Significantly female, 72.5% versus 61.9%,p<0.001. Significantly more functionally impaired, median Barthel score 11 versus 18, p<0.001.

Normal Cognition Dementia Living alone according to cognitive status, n=192 Not more likely to be alone, p=0.11

CART Demographic Analysis Outcomes: Global Risk Scores A. Institutionalisation. B. Hospitalisation. C. Death. Risk Scores 1 5, Minimal/Low Extreme/Certain. Low: 1 & 2 Medium: 3 High: 4 & 5

Estimated Risk of Institutionalisation @ 1 yr

Estimated Risk of Hospitalisation @ 1 yr

Estimated Risk of Death @ 1 yr

CART Demographic Analysis Risk of institutionalisation = Most Interest. From a cost-benefit & Quality of Life perspective. What is the impact of dementia & living alone on percieved risk?

Estimated Risk of Institutionalisation @ 1 yr Total Population Total Dementia Dementia / living alone

CART Demographic Analysis Risk of institutionalisation Few are at high risk, only 3.1% of the sample, 12 cases from 400. High (risk scores 3 or 4 or 5) Vs Low Risk cases

CART Demographic Analysis Risk of institutionalisation Few are at high risk, only 3.1% of the sample, 12 cases from 400. Medium, n=37. Low,n=333. High (combining med & high risk), n=49 Vs Low Risk cases.

CART Demographic Analysis High (combining med & high risk), n=49 Vs Low Risk cases. A: Risk of Std. Institutionalisation N Mean Deviation low risk Age 333 79.83 7.359 Barthel 325 16.61 4.046 Frequency Living 168 50.6% alone high risk Age 49 82.79 6.183 Barthel 48 11.37 5.127 Frequency Living alone 24 48%

CART Demographic Analysis Perceived High Risk individuals with dementia Are: Older, p=0.008. More functionally dependent, p<0.001. Equally likely to be male or female, p=0.156 and living alone or with someone, p=0.76.

CART Demographic Analysis This is early demographic analysis of only ¼ of the validation sample. Ongoing analysis to investigate how healthcare resources are given to perceived high versus low risk individuals.? Are we distributing limited resources appropriately.

Challenges scoring Risk 1. Transient conditions (esp w.r.t ADLs after illness/hospitalisation)...do we assign the level of risk according to our expectations or the current situation if circumstances remain unchanged. 2. Separating risk of institutionalization or death from prolonged hospitalization..in Ireland/Developed world prolonged hospital admissions are usually the final common pathway for both! 3. Timing.does the time scale of risk start from the moment of assessment until the event happens or when the event is felt to be inevitable? (e.g. from when the decision for institutionalisation is made or when the individual is transferred to a nursing home).

Why use the CART? E X I S T I N G T O O L S L O O K AT T H E S TAG E AT / A F T E R D I S C H AR G E F R O M H O S P I TAL.. A F T E R S O M E T H I N G H AS AL R E AD Y H AP P E N E D.... L O O K AT S E C O N D ARY R I S K... L O O K O N LY AT A F E W P R O V E N R I S K S ( O L D... C O G N I T I V E LY I M PAI R E D... AL O N E ) C AR T I S T H E F I R S T T O O L T O : 1. I D E N T I F Y & AS S E S S W H AT K E E P S P E O P L E AT H O M E.. T H E I R C AR E N E T W O R K. 2. B E C O M P R E H E N S I V E : C O M B I N I N G AL L R E L E VAN T R I S K S T O G I V E A T R U E P I C T U R E O F C O M M U N I T Y D W E L L I N G O L D E R AD U LT S. 3. L O O K AT R I S K. 4. P R E D I C T R E AL O U T C O M E S I N R E AL C O M M U N I T Y D W E L L E R S. 5. W I L L C R E AT E A C O M M O N L AN G U A G E B E T W E E N 1 0 & 2 0 C AR E 6. W I L L D E V E L O P I N T O TAI L O R E D M AN A G E M E N T PAT H WAY S.

Why use the CART? T H E C AR T I S A U N I Q U E WAY O F L O O K I N G AT O L D E R P E O P L E L I V I N G I N T H E C O M M U N I T Y. W H E N VAL I D AT E D I T P R O V I D E A R E AD Y C O N T R O L P O P U L AT I O N T O AS S E S S T H E U S E F U L N E S S O F I N T E R V E N T I O N S.

Thank you Q U E S T I O N S