Reflecting the impact of longterm. Ann Netten AAG Annual Conference Canberra 4 November 2016

Transcription

1 Reflecting the impact of longterm care: ASCOT Ann Netten AAG Annual Conference Canberra 4 November 2016

2 Re-imagining our future Implications of ageing for my future Loss of capacity? Need for care? Becoming more expert as we age.. Experiencing and observing care How can we make it better? Improvement and innovation Going beyond current service boundaries What are we aiming for? What are we achieving? 2

3 Reflecting the impact of long-term care What are we aiming to achieve? The role of measurement Adult Social Care Outcomes Toolkit (ASCOT) International take up Reflecting impact Surveys Care homes Re-imagining long term care 3

4 What do we mean by long term care? Usually for people with long-term conditions.often deteriorating over time.often multiple.which result in impairment in activities of daily living Most care provided by informal carers Care services: Substitute for what individuals would have done Home care/personal assistance, care homes/assisted living etc. Improve individuals productivity Assistive technology Prevent avoidable deterioration/ health problems Through meeting needs (e.g. reducing isolation)

5 The role of measurement Evaluation What works and for whom? Making best use of resources Improving quality What are services achieving? Are they improving? Incentives Care planning and monitoring What outcomes are we aiming to achieve Have we achieved them?

6 What do we want of care outcome measures? Sensitive to care effects All important aspects of quality of life (QoL) Relevant to all care settings Reflects relative importance of aspects of QoL Inclusive Cognitive and communication difficulties Unpaid carers Valid and reliable

7 Quality of life outcomes Health Treatment and mitigation of impairment Health related quality of life (HRQoL) Ability to undertake activities, pain etc Social care/ social services Compensation for impairment Social care related quality of life (SCRQoL) Personally clean, fed, socially engaged etc ASCOT Measuring SCRQoL 7

8 ASCOT Team at the PSSRU Ann-Marie Towers (ASCOT lead, care homes, training) Juliette Malley (Preference studies, translations) Nick Smith (Training lead, care homes, dementia) Kamilla Razik (Support and translations) Stacey Rand James Caiels Ann Netten Ed Ludlow (International developments) (IT manager) (Validation, carers, proxy, training) (Easy read, proxy) 8

9 Taking you through ASCOT.. Ensuring sensitivity to care effects Reflect relative importance of aspects of QoL Inclusivity Face or experience validity Core toolkit Recent developments 9

10 Older people s utility scale (2002) Measuring Outcomes for Public Service Users (2010) Preference study Preference study Productivity in national accounts (2005) Individual Budgets Evaluation (2008) Preference study Younger adults user experience survey (2006) Outcomes of social care for adults (2012) Adult social care survey (2010) SCT3 CH3 Adult social care outcomes toolkit INT4 SCT4

11 Effect of care identifying domains Historically basic needs being met Functionings - states of being e.g. clean, fed Increasing emphasis on higher order Social participation, Control and Occupation Capabilities: the freedom to be able to do something valued Domains tried and discarded E.g. Living in own home, Caring for others Final domain Dignity How we feel about having to be helped Being treated with respect Impact on how we feel about ourselves

12 The measure 8 Social care related quality of life domains: Four basic (personal and accommodation cleanliness, food and drink and safety) Three higher order (Social participation, Control and Occupation) One impact of process (Dignity) Response options Two need levels functionings Two met need levels capabilities Preference weighted scoring (0 = being dead ) 12

13 English general population preferences Ideal No needs Some needs High needs Control Occ P care Safety Food Soc part Accom Dignity

14 The core toolkit Self completion questionnaire (SCT4) Interview schedule (INT4) Care homes mixed methods (CH3) Evidence gathering for rating scale Training in observation and rating Scoring guidance preference weightings Spreadsheet for presenting data

15 Identifying impact in the toolkit Interviews and mixed methods Current situation? What if no service (expected)? Current SCRQoL Experienced quality of life Expected SCRQoL Need for intervention Associated with ADLs & informal care SCRQoL gain Difference between current and expected

16 Older home care users needs and outcomes accom control care occu meals social safety current needs expected needs

17 Older care home residents needs and outcomes accom control care occu meals current needs social safety needs without services 17

18 Recent developments Who are we missing? How can we improve the toolkit and methods? Carers Improving inclusion How can we better reflect experiences and outcomes of people with cognitive impairment and communication difficulties 18

19 Carer outcome measure Based on ASCOT developed with carers Self completion and interview version Carers able to identify expected Rand et al (2016) 7 domains Two basic (Self care and Personal safety) Three higher order (Social participation, Control and Occupation) Two carer specific (Feeling supported and Time and Space) Preference study underway 19

20 Improving inclusion Easy read (ER) Beta version available, further testing & validation ongoing Talking Mats In development and being piloted now Will form part of mixed-methods approach Semi-structured interview Coming on stream soon Proxy instrument Coming on stream soon Mixed methods in the community Ethics and provider resistance defeated us! 20

21 International take-up Translations Methodological studies Research evaluations Dominated by policy and practice Quality monitoring and assurance Demonstrating outcomes to commissioners Outcome focused planning and review Improving quality of care 21

22 Translation Maintaining quality and integrity of measure A number of unaccredited versions Translation guide on the website Concept elaboration documents Accreditation process SCT4 validated translations near completion Finnish German Dutch Italian Translation proposals agreed/under discussion Japanese and Portugese Challenges Control and Dignity domains

23 Recent and ongoing preference studies Estimating preference weights Netherlands Austria Finland Comparisons/mapping with other instruments Australia with EQ5D and AQoL (Julie Ratcliffe and colleagues, Flinders) England with EQ5D (John Brazier, Sheffield) 23

24 Examples of use in policy & practice Australia Australian Com Care Outcome Measurement Tool Whiddon Group care homes Department of Health piloting as a Quality Indicator Northern Ireland H&SC Board Assessment and review Austria reporting on home care in Vienna Finland improving QoL in nursing homes Netherlands monitoring innovation sites Denmark surveys of care homes &home care

25 BUT Measuring just the first step How do we use the information? Role of measurement in improving quality What are services achieving? Are they improving? Incentives Developments in England Surveys of community care Care homes 25

26 English surveys Department of Health requirement Since 2010 replacing user experience surveys All service user groups and care settings Adult Social Care Survey (ASCS) Each year 60,000 Survey of Adult Carers - Biennial 60,000 Local authorities (LAs) conduct Results used in national Adult Social Care Outcomes Framework 26

27 Adult Social Care Outcomes Framework (ASCOF) Overarching monitoring of social care Social care related quality of life (ASCOT) central plank Local councils use to improve commissioning and quality Challenging for local councils Using data Being compared on QoL outcomes? 27

28 Maximising the value of data Collaborative project supporting LAs How to guides on Preparation Analysis and interpretation Reporting Each guide provides Overview of process Links to useful tools, templates and resources Case studies and examples of using data to inform local performance improvement activities 28

29 Identifying Impact of Adult Social Care (IIASC) study Julien Forder, Juliette Malley, Stacey Rand, Florin Vadean, Karen Jones Aims To develop outcome indicators that reflect added value or impact of social care support Indicators to use data collected in user and carer surveys Validation and further development of ASCOT 29

30 IIASC data 22 councils in England June 2013 to March 2014 Sample 990 community care service users (770 non LD) 387 of their carers (318 non LD) Questionnaire covered: Service receipt and informal care ASCOT Understanding of expected questions Functional ability, health, environment, resources 30

31 Responses to ASCOT Distribution of current and expected ASCOT scores Missing stats 2 Current = 0.1% Expected = 2.1% Expected - more missing cases for higher order domains (social participation & occupation) Density ASCOT score Current ASCOT score Expected ASCOT score kernel = epanechnikov, bandwidth = Low nonresponse: it is feasible, but feedback suggested it is not easy for people to do 31

32 Statistical analyses Production function for adults with PDSI and MHP SCRQoL depends on: Age Self rated health Levels of impairment (ADL count) Living alone Design of home Access to local environment Instrumental variables Reflecting impact of unmeasured influences Benefit receipt, council type Service intensity 32

33 Outcome estimates 1 Pearson s Correlation Rho= SCRQoL gain (IV estimation) SCRQoL gain (CSEPP) Higher mean effect Diff approx. 4% of scale 33

34 Implications for ASCOF Feasible to generate an indicator of impact Better indicator of variation between LAs Should allow for differences beyond their control Ensuring comparing like with like Adjustment would affect council rankings LAs could generate local impact indicators Adjusted indicator to be included from 2016/17 34

35 Care homes High proportion cognitively impaired Mixed methods approach Interviews residents staff and relatives Observation what is care actually achieving? Ratings of current and expected Gain a better indicator of quality Training Positive feedback Lightbulb moments Questions raised Implications for improving practice and care planning 35

36 Improving practice Exploratory study in four homes Feedback anonymised results to staff Positive response to feedback Changes in practice implemented Excellent inter-rater reliability (76%) Challenges in recruitment Ann-Marie Towers, Nick Smith, Sinead Palmer and Elizabeth Welch (2016) 36

37 What makes a good quality home? Measuring outcomes of Care Homes project Ann-Marie Towers, Nick Smith, Sinead Palmer, Grace Collins, Julien Forder Key questions How do outcomes relate to regulator star ratings? Impact of staff characteristics on outcomes Impact of residential care on informal carers? Methodological 4 outcome states per domain feasible and reliable? Talking Mats Written report and feedback to participating homes Due to complete

38 Implications for re-imagining long term care If we are to improve and innovate we must be Clear what we want to achieve and Clear whether we are achieving it Social care related quality of life (SCRQ0L) Personally, nationally and internationally relevant ASCOT provides A sound basis for measurement A variety of tools and approaches A framework for innovation and improvement 38

39 A framework for innovation and improvement? Domains as checklist Welsh review of care home quality Focus on specific domains Control Most important domain in terms of capacity to benefit What does it look like? How can we enhance? Dignity Impact on self esteem of needing help Impact of way care and support provided Implications for attitude to care and support Adaptation 39

40 Inclusion and impact Including all service users Including carer outcomes Basis for comparison of outcomes Reflecting impact Better evaluation of what works best for whom Better resource allocation Making use of qualitative data Ultimately - Better quality of life for users and carers 40

41 Acknowledgements QORU and the NIHR School for Social Care Research (SSCR)are funded by the Policy Research Programme in the Department of Health (England). QORU has a stream of work supporting and developing ASCOT. SSCR has funded is funding the Care Home level and Talking Mat and studies The views expressed in this presentation are not necessarily those of the Department

42 Instruments & data entry tools Guidance & FAQ & References Feedback Registration

43 References Forder J, Malley J, Rand S, Vadean F, Jones K, Netten A (2016) Identifying the impact of adult social care: Interpreting outcome data for use in the Adult Social Care Outcomes Framework QORU, PSSRU Discussion Paper 2892 Malley J, Towers A, Netten A, Brazier J, Forder J, Flynn, T (2012) An assessment of the construct validity of the ASCOT measure of social care-related quality of life with older people, Health and Quality of Life Outcomes, Netten A, Burge P, Malley J, Potoglou D, Towers A, Brazier J, Flynn T, Forder J, Wall B (2012) Outcomes of Social Care for Adults: Developing a Preference- Weighted Measure, Health Technology Assessment, 16, 16, Rand S, Malley J, Towers A, Netten A, Forder J (In submission) Validity and reliability of the self-completion version of the Adult Social Care Outcomes Toolkit (ASCOT-SCT4) with adults with long-term physical, sensory and mental health conditions in England, Health and Quality of Life Outcomes Rand S, Malley J, Netten A, Forder, J (2015) Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT- Carer), Quality of Life Research, 24(11) Towers, A., Smith, N., Palmer, S., Welch, E. & Netten, A. (2016). The acceptability and feasibility of using the Adult Social Care Outcomes Toolkit (ASCOT) to inform practice in care homes. BMC Health Services Research. 43