Quality and Outcomes Research Unit (QORU)
- Principal investigator(s):
- Julien Forder, José-Luis Fernández, Ray Fitzpatrick
- Team:
- Julien Forder, Ray Fitzpatrick, José-Luis Fernández, Ann Netten, Julie Beadle-Brown, Nadia Brookes, Angela Coulter, Francesco D'Amico, Diane Fox, Clara Heath, Cheryl Hunter, Crispin Jenkinson, Martin Knapp, Juliette Malley, Michele Peters, Stacey Rand, Kamilla Razik, Lisa Richardson, Sara Ryan, Asuza Sato, Nick Smith, Ann-Marie Towers, Lisa Trigg, Agnes Turnpenny, Beckie Whelton, Sue Ziebland, Valentina Zigante
- Start year:
- 2010
- End year:
- 2018
- Funder:
- Secretary of State for Health
- Partners:
- PSSRU at Kent and LSE, University of Oxford, Tizard Centre (University of Kent)
- Website:
- https://www.qoru.ac.uk
The Quality and Outcomes Research Unit (QORU) has been funded by the Department of Health in England to develop and promote appropriate use of evidence, both quantitative and qualitative, of need, quality and outcomes in relation to long-term health conditions, with resulting beneficial impact on the quality of health and social services. The Unit has initially been funded to conduct a 5-year programme of research and will seek to: engage sufferers of long-term conditions in research; identify their conditions and circumstances and the effects these condition have on their quality of life; find the most appropriate ways to use information about people’s outcomes and experience to guide the development of the health and social care services in England; and gather evidence about the best strategies to support people with chronic diseases and other long-term conditions.
Publications
Journal Articles
Journal Article
Feasibility, factor structure and construct validity of the easy-read Adult Social Care Outcomes Toolkit (ASCOT-ER)
2020
Journal of Intellectual & Developmental Disability 45 2 119-132
Read moreJournal Article
Enhancing primary care support for informal carers: A scoping study with professional stakeholders
2020
Health and Social Care in the Community 28 2 642-650
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Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)
2019
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Journal Article
'We're Giving them Choice Which Is Controlled Choice' - Care Managers' Views on Finding Social Care Support for People with Learning Disabilities
2019
The British Journal of Social Work
Read moreJournal Article
Measuring the outcomes of long-term care for unpaid carers: comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3?L
2019
Health and Quality of Life Outcomes 17 184
Read moreJournal Article
The impact of social care services on carers’ quality of life
2019
International Journal of Care and Caring
Read moreJournal Article
Are reasons for care-giving related to carers’ care-related quality of life and strain? Evidence from a survey of carers in England
2018
Health and Social Care in the Community 27 151-160
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The factors associated with care-related quality of life of adults with intellectual disabilities in England: implications for policy and practice
2017
Health and Social Care in the Community 25 5 1607-1619
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Developing a proxy-report version of the Adult Social Care Outcome Toolkit (ASCOT)
2017
Health and Quality of Life Outcomes 15:108
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Building the House of Care for people with long-term conditions: the foundation of the House of Care framework
2017
British Journal of General Practice 66 645 e288-e290
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A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers
2017
Quality of Life Research
Read moreJournal Article
The Long-Term Conditions Questionnaire (LTCQ): initial validation survey among primary care patients and social care recipients in England
2017
BMJ Open
Read moreJournal Article
Validity and test-retest reliability of the self-completion adult social care outcomes toolkit (ASCOT-SCT4) with adults with long-term physical, sensory and mental health conditions in England
2017
Health and Quality of Life Outcomes 15 163
Read moreJournal Article
The impact of long-term care on quality of life
2017
Health Economics 27 3 43-58
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Exploring the feasibility and validity of a pragmatic approach to estimating the impact of long-term care. The 'expected' ASCOT method.
2017
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Journal Article
Psychometric properties of carer-reported outcome measures in palliative care: A systematic review
2016
Palliative Medicine 30 1
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The Long-Term Conditions Questionnaire (LTCQ): Conceptual framework and item development
2016
Patient Related Outcome Measures 7 109-125
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Refinement of the Long-Term Conditions Questionnaire (LTCQ): Patient and expert stakeholder opinion
2016
Patient Related Outcome Measures 7 183-193
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Patient feedback for quality improvement in general practice
2016
British Medical Journal 352 352:i913
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Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)
2016
Journal of Applied Research in Intellectual Disabilities
Read moreJournal Article
Use of quality information in decision making about health and social care services - a systematic review
2015
Health and Social Care in the Community 23 4 349-361
Read moreJournal Article
On interviewing people with pets: reflections from qualitative research on experiences with a long term condition
2015
Sociology of Health and Illness 37 1 67-80
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Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)
2015
Quality of Life Research 24 11 2601-2614
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Dutch translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT)
2015
Health and Quality of Life Outcomes 13:56
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Perspectives from health, social care and policy stakeholders on the value of a single self-report outcome measure across long-term conditions: A qualitative study
2015
BMJ Open 5 e006986
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Personalised care planning for adults with chronic or long-term health conditions
2015
Cochrane Database of Systematic Reviews
Read moreJournal Article
Time to deliver patient centred care
2015
British Medical Journal 350 350:h530
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Feeling in control: comparing older people’s experiences in different care settings
2014
Ageing and Society 34 8 1427-1451
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Using online reviews in social care
2014
Social Policy and Administration 48 3 361-378
Read moreJournal Article
Carers' quality of life and experiences of adult social care support in England
2014
Health and Social Care in the Community 22 4 375-385
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Using cost-effectiveness estimates from survey data to guide commissioning: an application to home care
2014
Health Economics 28 3 979-992
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The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort survey
2014
BMJ Open 4 2 e003968
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Change in health status in long-term conditions over a one year period: a cohort survey using patient-reported outcome measures
2014
Health and Quality of Life Outcomes 12 123
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What can local authorities do to improve the social care-related quality of life of older adults living at home? Evidence from the Adult Social Care Survey
2014
Health and Place 29 104-113
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Quality of life and burden in caregivers for individuals with Parkinson’s disease
2014
Focus on Parkinson’s Disease 24 1 44-48
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People with limiting long-term conditions report poorer experiences and more problems with hospital care
2014
BMC Health Services Research 14 14:33
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Collecting data on patient experience is not enough: they must be used to improve care
2014
British Medical Journal 348 348:g2225
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Patients’ experiences of health and social care in long-term neurological conditions in England: a cross-sectional study
2013
Journal of Health Services Research and Policy 18 1 28-33
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Personalised care planning for adults with long-term (chronic) conditions
2013
Cochrane Database of Systematic Reviews 5 CD010523
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The Stroke Impact Scale: Validation in a UK setting and development of a SIS short form and SIS index
2013
Stroke 44 2532-2535
Read moreJournal Article
The PDQ-Carer: Development and validation of a summary index score
2013
Parkinsonism and Related Disorders 19 4 448-449
Read moreJournal Article
The relationship between experiences of health services and quality of life: a cross-sectional survey with carers of three neurological conditions
2013
Health and Quality of Life Outcomes 11 103
Read moreJournal Article
Quality in the provision of headache care. 1: Systematic review of the literature and commentary
2012
Journal of Headache and Pain 13 6 437-447
Read moreJournal Article
The development and validation of a quality of life measure for the carers of people with Parkinson’s Disease (the PDQ-CARER)
2012
Parkinsonism and Related Disorders 18 5 483-487
Read moreJournal Article
Factors influencing quality of life in caregivers of people with Parkinson’s disease and implications for clinical guidelines
2012
Parkinson’s Disease 2012
Read moreJournal Article
The impact of perceived lack of support provided by health and social services to caregivers of people with motor neuron disease
2012
Amyotrophic Lateral Sclerosis 13 2 223-228
Read moreJournal Article
Does self-reported well-being of patients with Parkinson’s disease influence caregiver strain and quality of life?
2011
Parkinsonism and Related Disorders 17 5 348-352
Read moreEdited Books
Edited Book
Quality of Life Measures in Neurodegenerative and Related Conditions
2011
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Book Sections
Book Section
Patient and public involvement in healthcare
2016
Healthcare Management
Read moreBook Section
Personalised care planning
2016
Shared Decision-Making in Healthcare – Achieving Evidence-Based Patient Choice
Read moreBook Section
Engaging older patients in their treatment and care
2015
Oxford Textbook of Geriatric Medicine
Read moreBook Section
Condition-specific measures
2014
Encyclopedia of Quality of Life and Well-Being Research 185-188
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Disease-specific questionnaires
2014
Encyclopedia of Quality of Life and Well-Being Research 188-188
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‘Quality’ in headache care. What is it and how can it be measured?
2011
Handbook of Headache 70-79
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Preface
2011
Quality of Life Measures in Neurodegenerative and Related Conditions xi-xii
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Outcome measures for informal carers of individuals with neurodegenerative conditions
2011
Quality of Life Measures in Neurodegenerative and Related Conditions 114-138
Read moreBook Section
Translating patient-reported outcome measures (PROMs) for cross-cultural studies
2011
Quality of Life Measures in Neurodegenerative and Related Conditions 139-146
Read moreReports
Report
Commissioning services for adults with learning disabilities or autism: the views and experiences of commissioners
2017
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Report
IIASC report: Interpreting outcomes data for use in the Adult Social Care Outcomes Framework (ASCOF)
2016
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Report
Identifying the impact of adult social care: Interpreting outcome data for use in the Adult Social Care Outcomes Framework. Plain English Summary
2016
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Report
Commissioning services for adults with learning disabilities or autism: the views and experiences of commissioners
2016
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Report
Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)
2015
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Report
Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) - Appendix
2015
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Report
Making the Adult Social Care Outcomes Toolkit Easy Read
2015
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Report
The development of the long-term conditions questionnaire (LTCQ). Interim report
2015
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Report
Cancer PROMs: A Scoping Study. Report to Macmillan Cancer Support
2015
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Report
Understanding and addressing underrepresentation in a postal survey of social care users. Summary
2014
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Report
Pilot study of patient reported outcome measures (PROMs) in primary care
2013
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Report
Report on using the GPPS to assess trends in EQ-5D scores for people with long-term conditions
2013
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Report
Some considerations relating to the attribution of NHS activity to outcomes for people with long-term conditions
2013
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Report
Personal outcome measures and postal surveys of social care
2013
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Report
Understanding and addressing underrepresentation in a postal survey of social care users. Full report
2012
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Report
"It’s very weird having other people in the space that you think is kind of private”: Choice and decision making around home based health and social care services (Summary)
2012
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Project Outlines
Project Outline
Living with Long-Term Conditions: Validation of the Long-Term Conditions Questionnaire (LTCQ)
2016
Project outline
Read moreResearch Summaries
Research Summary
Identifying the Impact of Adult Social Care (plain English summary)
2015
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Research Summary
"It’s very weird having other people in the space that you think is kind of private”: Choice and decision making around home based health and social care services (Final report)
2012
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Research Summary
Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Populations. Summary
2012
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DPs or Working Papers
DP or working paper
Heterogeneity in the effect of obesity on future long-term care use in England
2019
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DP or working paper
ASCOT Easy Read: usability evaluation of an electronic adaptation
2019
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DP or working paper
The impact and cost of adult social care: marginal effects of change in funding
2018
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DP or working paper
Body mass, physical activity and future long-term care use
2018
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DP or working paper
Engagement of people with long-term conditions in health and social care research: a review of barriers and facilitators to capturing the views of seldom-heard populations
2016
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DP or working paper
How can MAX help local authorities to use social care data to inform local policy? Maximising the value of survey data in adult social care [MAX] project
2015
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DP or working paper
Using a ‘wellbeing’ cost-effectiveness approach to improve resource allocation in social care
2015
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DP or working paper
How can MAX help local authorities to use social care data to inform local policy? (Executive summary)
2015
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DP or working paper
How can MAX help local authorities to use social care data to inform local policy? (Infographic)
2015
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DP or working paper
Further analysis of ASCS and PSS SACE data: Case studies of local authority (LA) practice
2015
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DP or working paper
Using Proxies to assess Quality of Life: A Review of the Issues and Challenges
2015
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DP or working paper
How can MAX help local authorities to use social care data to inform local policy? Maximising the value of survey data in adult social care [MAX] project. Executive Summary
2015
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DP or working paper
Generating ‘Adjusted’ Indicators from Social Care Survey Data
2014
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DP or working paper
Review of factors important in use of survey data for quality and performance improvement: Report from literature review
2014
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DP or working paper
Measuring the Social Care Outcomes of Informal Carers: An Interim Technical Report for the Identifying the Impact of Adult Social Care (IIASC)
2012
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Conference Presentations
Conference presentation output
Quality of life of older adults who use social care support and their unpaid carers
2015
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Conference presentation output
The Adult Social Care Outcomes Toolkit for Carers
2015
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Conference presentation output
The long-term conditions questionnaire (LTCQ): a patient-reported outcome measure
2015
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Conference presentation output
Body Mass, Physical Activity and Future Care Needs
2015
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Conference presentation output
Patient engagement and health information technology. Paper for Commonwealth Fund and Nuffield Trust, 15th International meeting on Improving the Quality and Efficiency of Health Care, 16-17 July 2015
2015
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Conference presentation output
Using ASCOT to improve care practice and monitor quality in care homes
2014
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Conference presentation output
How the Adult Social Care Outcomes Toolkit (ASCOT) can help us understand quality of life and quality of care of people living with dementia in care homes
2014
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Blogs
Blog
The rocky road to developing a toolkit
2016
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Blog
Living with long-term conditions: Validation of the Long-Term Conditions Questionnaire (LTCQ)
2016
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Blog
Public Involvement: the benefits of a research advisory group
2016
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Blog
Helping local authorities to maximise the local value and use of adult social care date for performance improvement
2016
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Blog
Maximising the local value of adult social care and carers survey data through stakeholder engagement
2016
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Blog
Using the analysis findings from the Adult Social Care Survey (ASCS) and Carers Survey (PSS SACE) to fulfil local authority (LA) information needs
2016
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Blog
Using reports to maximise the local relevance, value and use of adult social care and carers data for local performance improvement
2016
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Blog
Meeting local information needs with ASCS and PSS SACE data (Blog)
2015
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Blog
Webinars or workshops? Reflections on our first ASCOT webinar series
2015
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Blog
Supporting unpaid carers to have a life of their own alongside caring
2015
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