HQLC Dementia Carers Instrument Development: DECIDE

Lead Research Organisation: University of Leeds
Department Name: School of Medicine

Abstract

The number of people living in the UK with dementia is rising. Friends and family provide much of the care needed. Having a caring role may compromise well-being, quality of life, and finances. The annual economic cost of supporting people with dementia is estimated at £26.3 billion, with almost half being attributed to the care provided by 'informal carers'. Without informal carers government costs would be increased greatly. Maintaining carer quality of life and finding a way of measuring it are important not only for the carers and those cared for, but also for society. Having an accurate and meaningful way of measuring carer quality of life is needed in three distinct areas.
1. Individual carer assessment: to identify carers most at need.
2. Development and evaluation of services.
3. Policy making: to inform decision making concerning government spending.
There are numerous quality of life questionnaires with many used in dementia carer assessment. However, some are too general and do not pick up subtle changes in carer quality of life, others are too long and some have unreliable ways of working out scores. Some questionnaires (e.g.EQ-5D) have been used by organisations such as NICE (National Institute for Health and Care Excellence) to make recommendations on how money is spent by working out the 'value' the general population put on different health related quality of life situations (health states). The EQ-5D may be useful to value 'health states' but less useful in valuing 'carer states' since these go beyond health. Furthermore the 'value' the general population put on health/carer states may be different to the 'value' carers put on these states.
Therefore, the aims of this study, undertaken in two workstreams, are to:
-develop a quality of life questionnaire for carers of people with dementia (Carer-QoL) for use as described above in points 1-3,
-test how justifiable the underlying rules used by NICE are in 'valuing' benefits to carers,
-estimate peliminary 'values' for Carer-QoL.
Workstream 1: developing the new questionnaire (3 phases)
To capture the 'carer' experience the questionnaire items will be obtained directly from carers (phase 1 and 2 with 72 carers). The questionnaire scoring will be worked out in phase 3 in which 400 carers will be asked to complete the new questionnaire items and to complete the EQ-5D. The Carer-QoL will be created from the longer list of questions (without losing score accuracy and range) using an approved method called Rasch analysis.
Workstream 2: valuation and calibration (3 studies)
In study one, 1,000 people (general population, carers of people with dementia and other carers) will value different EQ-5D health states. These health states will include their own (real) as well as states previously reported by other carers (hypothetical) in national surveys. Values for real and hypothetical health states will be compared across each group. In the second study the scores from the EQ-5D and the Carer-QoL, collected in Workstream 1, will be jointly analysed to calibrate the Carer-QoL against EQ-5D scores. In the third study carer profiles will be generated using responses collected using the Carer-QoL in Workstream 1. Another 1,000 people (general population and carers) will be asked to select which carer profile they prefer from pairs of carer profiles presented in a web-based survey. From this it will be possible to place a value on the Carer-QoL scores from both a carer and a general population view point.
Beneficiaries from the research outcomes include: carers, people being cared for, service providers, policy makers and other researchers. This research will inform the debate on the value of health and quality of life and could contribute new empirical evidence bearing on the issue of perspective in determining that value. This will benefit decision-making bodies such as NICE as well as those submitting evidence on effectiveness and cost-effectiveness.

Technical Summary

DECIDE has 3 objectives:
1. develop a quality of life measure for carers of people with dementia (Carer-QoL)
2. test key assumptions embedded in the current approach to measuring the benefits of healthcare interventions and
3. estimate preliminary values for the Carer-QoL.

The project comprises 2 workstreams (psychometric and valuation) running in parallel.

Workstream 1 psychometric (3 phases). Phase 1, item pool generation employing a needs-based approach through interviews of 42 purposively sampled carers. Phase 2, Item refinement following cognitive interviews with 24 carers. Phase 3, Psychometric evaluation employing Rasch methods to ensure the final item set is unidimensional and satisfies requirements necessary to enable transformation to interval scaling. Carers (n=400) will complete the item pool and the EQ-5D with a subset re-completing the item pool for test-retest reliability and sensitivity to change analyses.

Workstream 2 valuation (3 studies). Study 1 compares health state values (EQ-5D derived) in carers and non-carers (n=1,000) using online surveying of self-reported health status using visual analogue scale rating and presenting descriptions of 8 "hypothetical" health states selected from the most frequently recorded EQ-5D health states. Study 2 will estimate the relationship between a draft Carer-QoL (Workstream 1 generated) and the utility-weighted index form of EQ-5D. Study 3 will quantify Carer-QoL values through direct valuation using an online Discrete Choice Experiment. Carer profiles will be generated from the draft carer-QoL items. Carers and non-carers (n=1,000) will select carer profile preference from a list of paired carer profiles. From this it will be possible to place a value on the Carer-QoL scores from both the carer and general population perspective.

DECIDE outputs and data will be available for other researchers, clinical, social and voluntary service organisations, practitioners and government agencies.

Planned Impact

This research is expected to generate the following outputs:
1. New, evidence-based insights about how carers of people with dementia describe their experience as a carer.

2. A new, brief, validated quality of life measure (Carer-QoL) designed using modern psychometric methods derived directly from the carers' experiences.

3. An item bank for use in developing:
(a) parallel short forms of the quality of life measure,
(b) a short-form of the measure that generates the best estimates of EQ-5D using social preference weights and 'carer' adjusted weights,
(c) computer adaptive testing.

4. New knowledge concerning how value (experienced and hypothetical) assigned by carers of people with dementia converge with societal value assigned to health state by the general population.

We expect these outputs to impact on the following individuals/organisations.

Service users
1. Carers: by providing services with a measure relevant to carers which is brief and easy to complete (low burden) resulting in potential early identification of diminished or changing quality of life, more timely intervention and provision of support leading to improved carer well-being.

2. People with dementia: by providing the means for services to undertake easy, accurate carer assessment leading to review of support for the carer and person being cared for, potentially resulting in sustained, supported continuity of care in their own home.

Service commissioners/providers
Through provision of a brief, free, reliable and valid carer assessment measure for use in:
- supportive care practice, with the Carer-QoL administered on paper or electronically for one-off assessment or for assessment over time, to aid effective carer assessment and support, leading to improved, targeted service delivery;
- service planning and development and evaluation to provide insight into interventions/services which are of most benefit to carers and to inform future service planning, possibly including economic evaluation.

The providers who would benefit include:
1. NHS funded providers such as primary care, community and acute commissioners. In particular those working on the integration of health and care shared records, including Chief Clinical Information Officer's (CCIOs) and NHS England transformational change leads for carers and dementia.

2. Local Authority commissioned health and care providers - 3rd sector, private sector and public health.

3. Other, regional and national Third Sector organisations (e.g. Alzheimer's Society, Carers Trust, Ageing Networks, Dementia Action Alliance members) and those not directly involved but influencers such as INVOLVE and the National Council for Voluntary Organisations (NCVO).


Policy makers
Though provision of:
- a calibrated measurement tool which has the potential to be used in economic -evaluation of service development and delivery;
- knowledge for challenging key assumptions embedded in the current approach to valuing benefits.

The policy makers who would benefit include the:
1. National Institute for Health and Care Excellence (NICE)
2. Care Quality Commission (CQC)
3. Department for Work and Pensions (DWP)
4. Department of Health (DH)
5. NHS England (NHSE)

Pharmaceutical companies or other companies testing interventions for dementia
Through provision of knowledge and an assessment measure which could be used for testing the effects of treatment for dementia, including assessing carer spill-over impacts.

The research community
Through publications, access to the quality of life measure for future research, new methodology regarding value assignment, collaborations leading to potential increased research capacity.

Publications

10 25 50

 
Title Scales measuring the Impact of DEmentia on CARers (SIDECAR) 
Description SIDECAR is a questionnaire to assess the quality of life of friends and family caring for someone living with dementia. SIDECAR comprises three separate scales. All items within the scales are scored using a binary Agree/Disagree response format. The time frame reference for the questions is TODAY. SIDECAR A: Direct Impact. This is the primary quality of life scale of 18 items. SIDECAR B: Indirect Impact. This is made up of 10 items. SIDECAR C Support and Information. This has 11 items and is reverse scored. SIDECAR scales may be used independently, or alongside each other to provide a profile of Quality of Life. The raw score of each SIDECAR scale is valid as an ordinal unidimensional score (easy to use in individual carer assessment), but the satisfaction of Rasch model assumptions also means that a 0-100 interval-level equivalent transformation is available for complete data (for use in clinical trials/research, service evaluation). In addition, there is the potential for QALYs to be calculated from SIDECAR-A for use in valuation. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2018 
Provided To Others? Yes  
Impact To date we have had ten inquireis about use of SIDECAR but as yet we are unaware of anyone using it. The registration of interest has come from a a range of people/services including primary and secondary care, social care, third sector and academic researchers. 
URL https://decideproject.co.uk/study-outputs/how-to-access-sidecar/
 
Title Dementia Carers Instrument Development (DECIDE) - data from workstream one (Psychometrics) 
Description The data included in this repository held at the University of Leeds is from Workstream One (psychometrics). This was undertaken in two stages. Stage one: A carer interview study to investigate the fundamental human needs of carers and using this information to develop potential items for SIDECAR (qualitative data). Stage two: Asking carers from across England and Wales to complete the items generated from stage one on three occasions along with other questionnaires and sociodemeographic information (quantitative data). These data were used to develop and evaluate the psychometric properties of SIDECAR. The data used to develop the questionnaire will be available to researchers until September 2023 . The quantitative data is openly available through DOI http://doi.org/10.5518/432 and contains survey data (quantitative) collected at two of three time points from informal carers of people with dementia who live in the community: at baseline (T1; n=570) and for a subset of carers six months later (T3; n=173). The qualitative data is available through DOI http://doi.org/10.5518/375 which will provide a summary and a link to request access. This comprises transcripts obtained from 41 of 42 semi-structured interviews with a purposively diverse sample of primary carers aged =16 years, supporting a partner or family member who had a diagnosis of dementia and living in the community. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact None known 
URL https://archive.researchdata.leeds.ac.uk/421/
 
Description 12th Annual UK Rasch User Group Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The annual UK Rasch User Group Day is a chance for all Rasch enthusiasts to meet, discuss and present their work. Presentations are welcome from work at all stages of conception and from all disciplines. Everyone is welcome, from beginners through enthusistic amateurs, to advanced practitioners. Good feedback on the DECIDE study methodolgy.
Year(s) Of Engagement Activity 2018
URL http://www.rasch.org.uk/raschday/2018/03/03/raschday-twelve-papers.html
 
Description EUROQOL annual plenary meeting; Lisbon 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The EuroQol Group Association holds an annual Plenary Meetings. During the scientific sessions, members and co-workers of the EuroQol Group present papers on topics that include methodological/valuation aspects of EQ-5D. Ed Webb presented "Valuing EQ-5D-3L in a UK general population survey: transforming discrete choice experiment latent scale values using a novel methodology"./ Good discussion and feedback on this novel methodology.
Year(s) Of Engagement Activity 2018
URL https://euroqol.org/euroqol-2/annual-meetings/
 
Description End of study event for the DECIDE study September 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The purpose of this event is to try to get our work in the public eye. We invited people of 'influence' in the world of dementia caring. The event was opened by the Vice CHancellor or the Universty of Leeds and speakers included: NHS England: Head of Patient Experience and Carers Programme Lead, NHS Indicator Governance Board chairperson; Cheif Executive of Carers Leeds, Head of research and development at Dementia UK. We presented the main outcome from the DECIDE study which is: SIDECAR (Scales measuring the Impact of DEmentia On CARers), describing how it was developed, how it may be used and accessed. The audience was a mix from health, social and third sector care, commisioners, academics, carers and members of our steering group. Discussion was lively, interest high and good connections made for taking the work forward. In addition, those who were unable to attend were emailed the Event hand out. Following from this we have had a number of inquireis for use of SIDECAR.
Year(s) Of Engagement Activity 2018
URL https://decideproject.co.uk/news-and-updates/sidecar-launch-event/
 
Description NIHR Clinical Research Network (Yorkshire and Humber) Dementia Regional Specialty Group Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The gathering comprised early-career researchers, GPs willing to champion research and leading dementia researchers from the region and further afield, as well as Network staff.
The day had three main aims:
To further develop current dementia early career clinical researchers in NHS trusts;
To engage multi-professional dementia early clinical researchers;
To strategically examine methods for GPs and primary care research staff engagement in dementia studies with CRN research staff support.
Good discussion, new contacts made and face to face meeting for the first time with others. Potential collaboration for next funding application.
Year(s) Of Engagement Activity 2019
URL https://www.nihr.ac.uk/news/early-career-researchers-and-primary-care-staff-focus-of-dementia-resear...
 
Description Oral presentation at Seventh International Conference on Probabilistic Models for Measurement, University of Western Australia, Perth, Australia by Mike Horton 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Mike Horton presented the results of the psychometrics phase of the DECIDE study to an audience of expert methodologists. He was given good feedback and offered suggestions for ways to approach the work.
Year(s) Of Engagement Activity 2018
URL http://www.education.uwa.edu.au/ppl/raschconference
 
Description Press release to coincide with World Alzheimer's day 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A press release to coincide with International Alzheimer's day (21st September 2016) World Alzheimer's Day on 21 September which described DECIDE study (Dementia Carers Instrument Development). This was picked up by the Telegraph and Argus (Bradford daily newspaper) and also run in the Ilkley Gazette (;ocal weekly newspaper).
Year(s) Of Engagement Activity 2016
URL http://www.thetelegraphandargus.co.uk/news/14753611.University_of_Bradford_researchers_measure_impac...
 
Description Short presentation to Bradford District Care Trust 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presented an overview of the project to the Bradford DIstrict Care Trust members comprising researchers, clinicians and R&D/governence representatives. Aim to buy in interest from the team for supporting the project. Generated interest wider than those already knoweldgeable about the study.
Year(s) Of Engagement Activity 2015
 
Description Short presentation to Bradford District Care Trust patient and public involvement meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Presenting the study for PPI feedback on study. Got some simple feedback on study documentation.
Year(s) Of Engagement Activity 2015
 
Description Short presentation to Leeds Integrated Dementia Board 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact PI attended a meeting hosted by the Leeds Integrated Dementia Board (collaboration between Leeds City Council Social Services, Health Services and third sector organisations). The meeting was focussed on carers of people with dementia. I presented the study outline and plans for next three years.
Year(s) Of Engagement Activity 2015
 
Description Yorkshire & Humber Dementia Research Event "Bridging the Gap to Evidence-based Dementia Care" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The purpose of this event was to bring together Commissioners; Academic Researchers; Service Managers; Clinicians including AHPs, Nursing and Medical Staff; Care Home and Domiciliary Care Staff; People Living with Dementia and Family Carers to:
1. Celebrate world-leading applied dementia research across Yorkshire & Humber, as it aligns to the Dementia Well Pathway
2. Highlight the benefits of research to people living with dementia and family carers
3. Share case studies which bridge the gap from research to evidence-based care
4. Provide an update on current applied dementia research studies within Yorkshire & Humber and how to get involved
5. Explore challenges in funding, commissioning and recruiting to research studies
6. Explore first steps to establishing a Yorkshire & Humber-wide evidence based dementia care network
An interesting day. Networking oportunities. Met researchers where interests overlapped.
Year(s) Of Engagement Activity 2016