Dementia Benchmarking Indicators Definitions and Data Sources Manual

Transcription

1 Indicators Definitions and Data Sources Manual (September 2015) 1

2 Contents Page Number Dementia Indicators 3 Indicator Summary Tables 4 General Notes 22 Glossary 23 Appendix 1 Dementia Criteria 24 2

3 Indicators In Scotland's National Dementia Strategy there is a clear need for improved dementia specific management and outcome information. The Dementia Toolkit aims to provide the monitoring framework to track change and improvement in the five key challenges over time. The five key challenges are: Fear of dementia that means people delay in coming forward for diagnosis Information and support after diagnosis for those with dementia and their carers is poor or non-existent General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes People with dementia and their carers are not always treated with dignity and respect Family members and people who support and care for people with dementia do not always receive the help they need to protect their own welfare and to enable them to go on caring safely and effectively Information supporting and monitoring these challenges is balanced with information on resources and financial s. 3

4 Fear of Dementia that means people delay in coming forward for diagnosis Number of patients on the QOF dementia register This was previously a HEAT target which was to maintain the proportion of people with a diagnosis of dementia on the Quality & Outcomes Framework (QOF) dementia register and other equivalent sources. The standard supported a commitment to achieve improvements in the early diagnosis and management of people with dementia. s Number of patients with a dementia diagnosis on the QOF dementia register Total number of patients on QOF register (list size) QOF register, ISD website: Practice/Quality-And-Outcomes-Framework/ Annually The percentage of patients diagnosed with dementia on QOF only, whose care has been reviewed in the previous 15 months. nss.isdgeneralpractice@nhs.net Dementia figures used for the HEAT target included data from sources other than QOF for a small number of practices that do not take part in QOF. They could also have included data from a small number of practices that did not have signed off QOF data, as these non-signed off data contributed towards the target. As a result these figures will differ for some NHS Board areas from the main QOF prevalence data published elsewhere. 4

5 Information and support after diagnosis for those with dementia and their carers is poor or non-existent The percentage of patients diagnosed with dementia on QOF only, whose care has been reviewed in the previous 15 months. The percentage of the total applicable patients on the dementia registers whose care has been reviewed in the previous 15 months. No. of patients reviewed within 15 months Total applicable register size Number of patients reviewed within 15 months Total applicable QOF dementia register size. Patients who have been exception reported have been excluded from the total list. QOF register, ISD website: Practice/Quality-And-Outcomes-Framework/ Annually s Number of patients on the QOF dementia register nss.isdgeneralpractice@nhs.net Indicator is linked to the QOF DEM02 indicator: The practice reports the percentage of patients with dementia on its register who have had their care reviewed in the previous 15 months. Practices which demonstrate that >60% of patients registered have had a review within 15 months are awarded 15 QOF points. Points are awarded on a sliding scale between 25% and 60%. QOF data is available for different GP contract types (ngms, 17c, 2c). However, QOF is only a specific part of the ngms contract type other contract types (17c and 2c) may use QOF in part or entirely or not at all. Reasons why a patient might be exception reported include: - the treatment not being clinically appropriate for the patient, the patient not attending for treatment, the patient refusing to have the treatment, or the patient only having been diagnosed/registered with the practice very recently. 5

6 Fear of dementia that means people delay in coming forward for diagnosis Proportion of people in care homes with a clinical diagnosis of dementia versus non clinically diagnosed Number of residents with medical diagnosis of dementia versus non medical diagnosis per total care home places/residents. Dementia medically diagnosed - residents are only counted where dementia has been diagnosed by a doctor. Dementia not medically diagnosed - residents are included where they are believed by staff to have dementia, but for whom no medical diagnosis has been made Total Number of long stay residents with medical diagnosis X 100 Total Number of Places/Residents Total Number of long stay residents with non medical diagnosis X 100 Total Number of Places/Residents s Number of residents with medically/non medically dementia diagnosis Number of care home places/residents Scottish Care Home Census Annually To better understand the handling of Dementia patients through social care Scottish Care Home Census Data on long stay residents is collected only on a sample (81% in latest census, 2014). The census refers to the main client group of the Care Homes and not the client group of the residents Numbers presented in the census are estimated based on the number of returns from the census 6

7 Information and support after diagnosis for those with dementia and their carers is poor or non-existent Number of prescriptions of BNF 4.11 Drugs for dementia per 1,000 population 65+ The number of dispensed items for BNF 4.11 Drugs for dementia for patients with a valid CHI only 65+ Number of dispensed items BNF 4.11 x 1,000 Total Population (65+) Number of BNF 4.11 Drugs for dementia dispensed Total Population 65+ (GROS mid year estimates) ISD Prescribing - Annually s Prescribing rates for antipsychotics per 1,000 population 65+ mailto:nss.isdprescribing@nhs.net Antipsychotic drugs BNF Anticholinesterase BNF

8 Information and support after diagnosis for those with dementia and their carers is poor or non-existent Number of patients and carers recruited to the research interest register The register provides a central database of people with dementia and carers of people who are happy to be contacted about research into the causes and consequences of dementia. Patients recruited to the research interest register Number of dementia patients on the research interest register x 1,000 Total Population (65+) Ratio carers to patients Number of dementia patients on the research interest register Total Population 65+ (GROS mid year estimates) s contact-us@sdcrn.org.uk Assumes the majority of patients on the register are aged 65+ to determine rates per 1,000 population. 8

9 People with dementia and their carers are not always treated with dignity and respect Number of prescriptions of BNF Antipsychotics per 1,000 population 65+ The number of dispensed items for BNF Antipsychotics for patients with a valid CHI only 65+ Number of dispensed items BNF x 1,000 Total Population (65+) Number of BNF Antipsychotics dispensed Total Population 65+ (GROS mid year estimates) ISD Prescribing - Annually s Prescribing rates for dementia per 1,000 population 65+ mailto:nss.isdprescribing@nhs.net Antipsychotic drugs BNF Anticholinesterase BNF

10 General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes Number of acute admissions for people with dementia per 1000 population over 65 Number of spells with Dementia Diagnosis on discharge per 1,000 population (GROS mid year estimates for 65+) Total Dementia spells X 1,000 Total Population (65+) s Number of spells with Dementia diagnosis on discharge Total Population 65+ (GROS mid year estimates) SMR01 Monthly To better understand the handling of Dementia patients through acute services. Average Length of Stay (Acute) Dementia discharges: Home versus Care Home Percentage acute readmissions within 365 days Due to better recording of Dementia, it may look like dementia levels are increasing when in fact they are just being recorded more accurately. 10

11 Family members and people who support and care for people with dementia do not always receive the help they need to protect their own welfare and to enable them to go on caring safely and effectively Number of psychiatric admissions for people with dementia per 1,000 population over 65 Number of spells with Dementia Diagnosis on discharge per 1,000 population (GROS mid year estimates for 65+) Total Dementia spells X 1,000 Total Population (65+) Number of spells with Dementia diagnosis on discharge Total Population 65+ (GROS mid year estimates) SMR04 Monthly s Average Length of Stay (Psychiatric) Percentage psychiatric readmissions within 365 days Due to better recording of Dementia, it may look like dementia levels are increasing when in fact they are just being recorded more accurately. 11

12 General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes Dementia discharges: Home versus Care Home home hospital home Total Dementia spells Care path Total Dementia Spells SMR01 Monthly home hospital care home Total Dementia spells s To better understand the handling of Dementia patients through acute services. Average Length of Stay (Acute) Percentage acute readmissions within 365 days Number of acute admissions for people with dementia per 1000 population over 65 Due to better recording of Dementia, it may look like dementia levels are increasing when in fact they are just being recorded more accurately. 12

13 General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes Average Length of Stay (Acute) Average length of stay for patients 65+ with/without Dementia by NHS Board Length of Stay (days) Number of spells with Dementia diagnosis (65+) Length of Stay (days) Number of spells with Dementia diagnosis (65+) s SMR01 Monthly To better understand the handling of Dementia patients through acute services. Number of acute admissions for people with dementia per 1000 population over 65 Percentage acute readmissions within 365 days Dementia discharges: Home versus Care Home Due to better recording of Dementia, it may look like dementia levels are increasing when in fact they are just being recorded more accurately. 13

14 Family members and people who support and care for people with dementia do not always receive the help they need to protect their own welfare and to enable them to go on caring safely and effectively Average Length of Stay (Psychiatric) Average length of stay for patients 65+ with/without Dementia by NHS Board Length of Stay (days) Number of spells with Dementia diagnosis (65+) Length of Stay (days) Number of spells with Dementia diagnosis (65+) SMR04 Monthly s Number of psychiatric admissions for people with dementia per 1,000 population over 65 Percentage psychiatric readmissions within 365 days Due to better recording of Dementia, it may look like dementia levels are increasing when in fact they are just being recorded more accurately. 14

15 Resources and Financial Number of Psychiatry of Old Age beds per 1,000 population Average Available Staffed Beds X 1,000 GROS population 65+ Split by: G4 Psychiatry of Old Age AB Geriatric Medicine GLS Geriatric Long Stay Average Available Staffed Beds Total Population 65+ (GROS mid year estimates) Bed Data, ISD(S)1. Annually s nss.isds1@nhs.net The average daily number of beds which are staffed and are available for the reception of inpatients (borrowed and temporary beds are included). 15

16 General healthcare services do not always understand how to respond well to people with dementia and their carers, leading to poor outcomes Percentage acute readmissions within 365 days. Number of readmissions for spells of inpatient treatment (any specialty) within 365 days of a Dementia patient s discharge from a previous spell of treatment (any length of stay) as a percentage of total admissions. Readmissions within 365 days (where first spell in first year) Total Discharge Spells Total number of readmissions within 365 days Total discharge spells SMR01 Monthly Indicator may refer to the management of patient, quality of care or aftercare and access/availability of community care/out of hours/other support services. s Assumptions o Each patient may be counted more than once i.e. as many times as the individual is readmitted. o Calculations are based on total number of spells. 16

17 Family members and people who support and care for people with dementia do not always receive the help they need to protect their own welfare and to enable them to go on caring safely and effectively Percentage psychiatric readmissions within 365 days. Number of readmissions for spells of inpatient treatment for Mental Health specialities within 365 days of a Dementia patient s discharge from a previous spell of treatment (any length of stay) as a percentage of total admissions. Readmissions within 365 days (where first spell in first year) Total Discharge Spells Total number of readmissions within 365 days Total discharge spells SMR04 Monthly Indicator may refer to the management of patient, quality of care or aftercare and access/availability of community care/out of hours/other support services. s Assumptions o Each patient may be counted more than once i.e. as many times as the individual is readmitted. o Calculations are based on total number of spells. 17

18 People with dementia and their carers are not always treated with dignity and respect Use of the Mental Health Act for people over 65 Number of Dementia Guardianships 65+ per 10,000 population 65+ Number of Dementia Guardianships (65+) Total Population 65+ (GROS mid year estimates) Mental Health Welfare Commission s Annually 18

19 Resources and Financial Total spend for Dementia services Total Costs for: Geriatric Psychiatry Geriatric Assessment Geriatric Long Stay Split by Inpatients, Outpatients, Day Patients, Community Psychiatric Team, Resource Transfer Total Expenditure Total Population 65+ (GROS mid year estimates) ISD Cost Book R340, GROS mid year estimates Annually s Additional notes nss.isdcostsbook@nhs.net Scottish Financial Returns SFR Specialty analysis, inpatients SFR Specialty analysis, outpatient treatment clinics SFR Specialty analysis, outpatient consult clinics SFR 5.7n - Specialty analysis, nurse led clinics SFR AHP outpatient clinics, by profession SFR Specialty analysis, day patients SFR Community services SFR NHS services provided by sub contracting 19

20 People with dementia and their carers are not always treated with dignity and respect Number of people with dementia receiving home care Number of people with Dementia receiving Home Care 65+ GROS mid year population 65+ Number of people with Dementia receiving Home Care 65+ Total Population 65+ (GROS mid year estimates) Scottish Government Home Care Census - C SEHD Community Care Statistics, H1 Return & ProcXed Home Care collection Annually To better understand the handling of Dementia patients through social care s Additional notes swstat@scotland.gsi.gov.uk Data provided at local authority level and aggregated to Health Board level. 20

21 Resources and Financial Number of Care Home beds Number of Care Home registered places for older people per 1,000 population 65+ Registered Places for Older People X 1,000 Total 65+ population s Number of registered places for Older People Total population 65+ (GROS mid year estimates) Scottish Care Home Census - Scottish Government Health Analytical Services Division Annually To better understand the handling of Dementia patients through social care Proportion of people in care homes with a clinical diagnosis of dementia versus non clinically diagnosed swstat@scotland.gsi.gov.uk Data on long stay residents is collected only on a sample (81% in latest census, 2014). 21

22 General notes These data are released for management purposes and have not been adjusted to conform with Office of National Statistics Guidance on Disclosure Control. The tables may contain disclosive cells (cells with small numbers which might enable an individual patient or member of staff to be identified, perhaps with the aid of further knowledge of the topic) and should not be published without further consideration of the contents in light of the guidance. It is recognised that there is significant under-recording of dementia diagnoses in the general healthcare services. Therefore, variation in some of these data can partially be attributed to variations in diagnosis recording practices across Scotland and consequently any trends observed over time may be due, in part, to improvements in these recording practices. 22

23 Glossary ISD(S)1 The ISD(S)1 scheme provides routine quarterly aggregate information for monitoring activity in hospitals, and activity carried out in health centres and clinics in NHSScotland. Information collected (on monthly returns) relates to hospital beds, inpatients, outpatients, day cases, day patients, haemodialysis patients, ward attendees, patients seen by AHPs (Allied Health Professionals) and other technical department staff and cancellations. SMR Hospital data for patients treated in Scotland is collected as a series of Scottish Morbidity records (SMR). The record type denotes the general type of healthcare received during an episode and/or the nature or status of the patient. SMR01 An SMR01 is raised for each Inpatient and Day case admission for care in acute specialties/health professions listed and completed at the end of the Inpatient or Day case episode. An Inpatient or Day Case admission marks the start of an Inpatient or Day Case episode. Inpatient and Day case admissions include Inpatient and Day Case Transfers-In. SMR04 An SMR04 is raised at the outset of each Inpatient Admission and of each Day Case Admission for care in the mental health specialties in a psychiatric hospital or unit, or facility treating people with learning difficulties, whereby Part 1 of the record containing admission details is completed and submitted. The termination of an Inpatient Episode or of a Day Case Episode within these facilities then raises a completion of the SMR04 record (Part 2) which is a copy of the original record with the inclusion of transfer/discharge/disposal details. 23

24 Appendix 1 Dementia Criteria Identification of Dementia Age greater than or equal to 65. (Age on admission/discharge indicator specific). Specialty G4 Psychiatry of old age F00 - Dementia in Alzheimer s disease. F000 - Dementia in Alzheimer s disease with early onset. F001 - Dementia in Alzheimer s disease with late onset. F002 - Dementia in Alzheimer s disease, atypical or mixed type. F009 - Dementia in Alzheimer s disease, unspecified. F01 - Vascular Dementia. F010 - Vascular Dementia of acute onset. F011 - Multi-infarct Dementia. F012 - Subcortical Vascular Dementia. F013 - Mixed Cortical and Subcortical Vascular Dementia. F018 - Other Vascular Dementia. F019 - Vascular Dementia, unspecified. F02 - Dementia in other diseases classified elsewhere. F020 - Dementia in Pick s disease. F021 - Dementia in Creutzfeldt-Jacob disease. F022 - Dementia in Huntington s disease. F023 - Dementia in Parkinson s disease. F024 - Dementia in Human Immunodeficiency Virus [HIV] disease. F028 - Dementia in other specified diseases classified elsewhere. F03 - Unspecified Dementia. F030 - Unspecified Dementia. F039 - Unspecified Dementia. F03X - Unspecified Dementia. F051 - Delirium superimposed on Dementia. Where any of the codes above are present for diagnosis on discharge at any point; an episode, spell or patient is identified as Dementia. Alzheimer s A combination of primary diagnosis = G30 Alzheimer s disease and any of the above dementia codes also identifies a patient as Dementia. Spells - The No of (CIS) Continuous Inpatient Stays (SMR) is a count of unique MRL Link Number / CIS Number combinations and is the standard to use to count the number of Continuous Inpatient Stays (CIS) associated with SMR episodes i.e. normally refers to discharges. For multiple episode spells, where dementia diagnosis (as defined above) is present at any episode within the spell, the spell will be flagged as Dementia. Admission data taken from first episode in spell and diagnosis data from last episode in spell. 24