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Evaluation of Outcomes in Health Orla Hardiman MD,FRCPI, FAAN Director of Neurology Beaumont Hospital Health Services in Ireland Community Based services (Primary Care) General Practitoners Public Health Clinical Professionals Hospital Based services (Secondary Care) Consultants NCHDs Nursing Clinical Professionals Combined care programmes Deloitte &Touche Report Deloitte & Touche Executive Summary Current Measures of Efficiency (defined by Deloitte Touche report) • …”high utilisation of capacity, and increased use of day surgery…” • .Casemix Measuring Health Service • Mortality Data: Rates and causes of death • % Spending of total GDP • Health Status /Disease Status of Population Death Rates in Ireland Health Status of Population: Measurables Notifiable Diseases/ Conditions Primary care based data acquisition National databases Cancer Registry Intellectual Disability database National Physical and Sensory Database Quantitation of activity in secondary care Activity levels in acute hospitals Waiting lists Health Status Indicators ( Dept of Health Statistics) • • • • • • • Infectious Diseases New cancers Inborn errors of metabolism Low birth weight Accidental Injuries Alcohol consumption Satisfaction rating Health Indicators: Satisfaction Rating (Eurostat) Health Status of Population: Measurables Notifiable Diseases/ Conditions Primary care based data acquisition National databases Cancer Registry Intellectual Disability database National Physical and Sensory Database Quantitation of activity in secondary care Activity levels in acute hospitals Waiting lists Health Status of Population: Measurables Notifiable Diseases/ Conditions Primary care based data acquisition National databases Cancer Registry Intellectual Disability database National Physical and Sensory Database Quantitation of activity in secondary care Activity levels in acute hospitals Waiting lists Strategies to Adjust Provision of Care based on Available Statistics • Health Strategy • Cardiovascular Strategy • Cancer Strategy • Waiting List Initiative / National Treatment Purchase Fund (NTPF) Equity of Access to Hospital Care Waiting Lists: Caveats • Partial Data • Data based on “census-type” measures rather than “throughput-type” data • Reliability of data not verified (frequent validation of lists required) • Determinants for inclusion on waiting list, and rate of ascension to the top of the list not subject to audit Martin defends hospital waiting lists 04 May 2004 22:30 The Minister for Health, Micheál Martin, has said that there has been a significant fall in hospital waiting lists. Figures released by the National Treatment Purchase Fund this afternoon show that 37% of patients have now been waiting between three and six months. The figures also indicate that 43% of patients have been waiting between six and 12 months for surgery.. Assessment of Neurological Services as a Model of Health Care Provision What is a Neurological Condition? • A condition that affects the brain, spine or muscle • Can be roughly divided into 3 categories – Physically disabling – Non-Physically disabling – Loss of cognitive ability (Dementia) Health Status of Population: Measurables Notifiable Diseases/ Conditions Primary care based data acquisition National databases Cancer Registry Intellectual Disability database National Physical and Sensory Database Quantitation of activity in secondary care Activity levels in acute hospitals Waiting lists Prevalence of Neurological Conditions in Ireland • Approx 500,000 suffer from a neurological disorder in the Republic of Ireland • Not notifiable • No publicly funded national databases • No curative treatment • Not suitable for NTPF: • Frequently undiagnosed : Poor access to relevant specialist • Reliable data generated by investigators. No official data Epidemiology of MND in Ireland 6.0 5.7 5.3 4.7 Per 100,000 population 5.0 5.7 5.7 4.8 4.1 4.0 3.0 1.9 2.3 2.3 2.0 1.6 2.0 2.0 2000 2001 1.4 1.0 0.0 1995 1996 1997 1998 Year 1999 Prevalence rates Incidence rates Frequency of Review by a Neurologist in Ireland 100% 80% 60% 40% 20% 0% MS m >1 2 m 12 ev er N th s on th s on on m 6 M on th l th y MND Measuring Neurological Services: Available Data • Health Status /Disease Status of Population UNKNOWN • % Spending of total GDP UNKNOWN • Number of doctors per capita • Waiting lists and Hospital Activity Neurologists in Europe Distribution of neurologists in Europe Distribution of neurologists in Europe 8 100 It a ly It a ly N o rw a y 18 400 N o rw a y D e nma rk D e nma rk Gre e c e 21 200 21 300 A us t ria 23 200 A us t ria Lux e mb o urg 23 900 Lux e mb o urg N e t he rla nd s 25 800 29 100 N e t he rla nd s S w it z e rla nd Gre e c e S w it z e rla nd P o rt ug a l 33 100 P o rt ug a l Sweden 35 600 Sweden 38 500 F ra nc e F ra nc e 177 000 UK UK 333 300 Ire la nd 0 400000 Population per neurologist Ire la nd 0 25 50 75 100 Neurologists per million population 125 Problems in Current System based on Waiting Lists • Excessive reliance on unverified / inaccurate data, including waiting list data • Minimal audit of waiting list management: – Equity • Assumption that “outcome” is associated with “procedure” (usually surgical) Problems with Current System based on Waiting Lists • Absence audit data for non-surgical hospital-based clinical activity • Absence of audit /efficiency monitoring data for out-patient services • Absence of tools to measure outcomes for chronic conditions for which procedures are not indicated • Absence of measurement tools to assess continuity of care between hospital and community services • NO INCENTIVE TO PRACTICE EVIDENCE-BASED MEDICINE Waiting Lists M ac k D is or de le m s r Di se as e M e M ne ya ig st it s he ni a G ra vi s s n ND CI DP M St ro ke Sc le ro si s ile ps y Ep Pr ob so n Pa rk in er si o ca lB le ul t ip Co nv ed i M In Patient Services to Neurology Beaumont Hospital 2003 140 120 100 80 Admissions 60 40 20 0 ed i S Ne o 4 pl as m CI DP s 4 CN G ra vi le m s s r 6 a Pr ob yo si ti de 7 ya st he ni ac k M is or 9 M ca lB D ND 10 M n M 29 ve rs io S 30 Co n M ile ps y 60 St ro ke Ep No of Admissios Admissions from A+E Top Ten A&E Admissions 51 50 40 27 20 3 2 0 ta lA dm y 20 17 10 A ta dm lA dm C ID P Re A dm 80 Re 100 To To Number of Admissions Re ile ps Ep 140 A dm ta lA dm M S Re To ta A lA dm dm St ro ke Re To A ta dm lA dm M ND To Readmission Rates 128 120 91 67 60 43 40 24 4 10 0 13 Length of Stay for top 4 Diagnoses 30 27.9 25 23.2 20 Mean length of 15 Stay in Days 10 18.5 15.9 14.3 12 8.7 A&E 12.5 12 11 11 Elective 8.8 5 0 Epilepsy MS Transfers Stroke Diagnosis MND How Do We Compare? Top 5 Dx, Beaumont and Massachusetts General Hospital 20 18 16 14 12 10 8 6 4 2 0 MGH S Hy dr oc ep h M ND Beaumont M Ep ile ps y Ab sc es s Days Mean Length of Stay Cost Analysis Cost Analysis for Year 2003 (Diagnositic Related only) 35000 31284 30000 25000 20692 20000 Cost in € 17380 15000 10000 4145 5000 2984 0 Epilepsy Stroke MS MND CIDP Disease Assessment: Measurables • Survival rates • Symptoms, signs, disability measures and complications of condition and treatment • Health Status and Quality of Life • Experiences of patients and their carers • Costs of use of resources (UK Department of Health, 1992) Preliminary Studies of Outcome for Neurological Conditions Survival Survival of Irish ALS patients according to the clinic type attended 1 General Neuro clinic (n = 262) .8 Cumulative survival • Median survival of ALS clinic patients = 677 days versus 448 days for general neurology clinic • Beneficial effect persisted throughout follow-up: four year mortality rate decreased by 13.4% in the ALS clinic cohort 29.7% ALS clinic (n = 82) .6 229 days 10.7% .4 13.4% .2 0 0 250 500 750 1000 1250 1500 1750 2000 Time from diagnosis (days) Treatment with Riluzole 1 Cumulative survival .8 No Riluzole (n = 97) Riluzole (n = 149) 97) .6 .4 .2 0 0 1 2 3 4 Time (years) 5 6 Outcome Assessment: Management of Symptoms, Signs, Complications Outcome Evaluation: Clinical Signs and Disability Measures • Generic Scales • Disease Specific Scales • Individualised Measures Natural Course of Multiple Sclerosis Relapses and Disability Relapsing Remitting First exacerbation Total MRI-Lesion load Secondary Progressive Clinical MS Adapted from McFarland et al., 52nd Annual Meeting American Academy of Neurology, May 2000, San Diego, USA MRI-Activity Beta Interferon therapy modifies the course of Multiple Sclerosis Relapses and Disability Total MRI-Lesion load Relapsing Remitting Secondary Progressive EARLY TREATMENT Clinical MS First exacerbation MRI-Activity SPMS delayed Adapted from McFarland et al., 52nd Annual Meeting American Academy of Neurology, May 2000, San Diego, USA CIDP: Evaluation of Treatment Outcome Individualised Measurement preand post- IVIg Maximal Voluntary Isometric Contraction (Quantitative Muscle Assessment) 45 MVIC Values Lower Limbs 40 35 Kgs 30 Pre Rx 25 Post Rx 20 15 Median for age 10 5 0 HFLL HFLR KEXL KEXR KFLL Movement KFLR ADFL ADFR Effect of Rx on muscle strength Difference in muscle strength pre v post rx 20 15 10 5 0 -5 -10 -15 cycles of treatment Graph 4 : The patient was tested before and after treatment on 8 occasions (abscissa) and the change in muscle strength in 18 muscles was plotted (ordinate). Following the fifth treatment the patient felt that his muscle strength had deteriorated (not shown) . The patient was treated with plasmapheresis (cycle 6). This failed to improve his muscle strength. A further course of IVIg did not improve his clinical status (cycle 7) He was then treated with a CD 20 antibody (Rituximab). He did not require further IVIg infusion for 5 months. Re-introduction of IVIg infusions following treatment with Rituximab (cycle 8) led to an improvement in muscle strength Disease Assessment: Measurables • Survival rates • Symptoms, signs, disability measures and complications • Health Status and Quality of Life • Experiences of patients and their carers • Costs of use of resources (UK Department of Health, 1992) Quality of Life: What does it mean? Quality of Life Health-related QoL Health Status (ALSAQ5) v Functional Disability Scale (ALSFRS) 100 80 60 40 alsaq5 20 0 0 10 20 30 alsfrs-r N=31, r = -0.78, significant at p = 0.01 40 50 Relationship between Quality of Life & Functional Disability 100 80 60 40 disease 20 PPS MS 0 MND 0.0 .5 1.0 functional disablilty 1.5 2.0 2.5 3.0 Disease Assessment: Measurables • • • • • Survival rates Symptoms,signs and complications Health Status and Quality of Life Experiences of patients and their carers Costs of use of resources (UK Department of Health, 1992) Cost Analysis Cost Analysis for Year 2003 (Diagnositic Related only) 35000 31284 30000 25000 20692 20000 Cost in € 17380 15000 10000 4145 5000 2984 0 Epilepsy Stroke MS MND CIDP Costs of Managing MND Demography by Year Male Limb 35 Audit Costs IRL£ Patient care Transport 30 Male Bulbar 25 no. of new Patients 20 Female Bulbar 15 Female Limb 10 5 Prevalence per 100,000 pop. over 15years of age 0 1996 1997 1998 1999 2000 YEAR 1996 1997 1998 1999 2000 New Equip. 109,000 117,000 191,000 114,000 108,000 attendants of equip. Storage 15,000 17,000 5,000 27,000 25,000 5,000 28,000 33,000 5,000 33,000 34,000 5,000 51,000 40,000 5,000 Totals 146,000 174,000 257,000 186,000 204,000 Year Equipment cost- Total/year Equipment Funding 400,000 350,000 300,000 250,000 IRL£ 200,000 150,000 100,000 50,000 0 250,000 200,000 150,000 IRL£ 100,000 50,000 0 IMNDA National Lottery Gov. Grant 1996 1996 1997 1998 Year 1999 2000 1997 1998 Year 1999 2000 How Can Evidence-Based Medicine Be Used to Change the Practice of Medicine in Ireland? Quis custodiet ipsos custodes? Proposed Structure of Health Service Proposed Structure of Health Service CONCLUSION