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

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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Journal Article

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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Journal Article

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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Journal Article

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

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Journal Article

The Long-Term Conditions Questionnaire (LTCQ): initial validation survey among primary care patients and social care recipients in England

2017

BMJ Open

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Journal 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

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Journal Article

The impact of long-term care on quality of life

2017

Health Economics 27 3 43-58

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Journal Article

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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Journal Article

The Long-Term Conditions Questionnaire (LTCQ): Conceptual framework and item development

2016

Patient Related Outcome Measures 7 109-125

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Journal Article

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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Journal Article

Patient feedback for quality improvement in general practice

2016

British Medical Journal 352 352:i913

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Journal Article

Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)

2016

Journal of Applied Research in Intellectual Disabilities

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Journal 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

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Journal 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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

Personalised care planning for adults with chronic or long-term health conditions

2015

Cochrane Database of Systematic Reviews

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Journal Article

Time to deliver patient centred care

2015

British Medical Journal 350 350:h530

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Journal Article

Feeling in control: comparing older people’s experiences in different care settings

2014

Ageing and Society 34 8 1427-1451

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Journal Article

Using online reviews in social care

2014

Social Policy and Administration 48 3 361-378

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Journal 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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

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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Journal Article

Personalised care planning for adults with long-term (chronic) conditions

2013

Cochrane Database of Systematic Reviews 5 CD010523

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Journal Article

The Stroke Impact Scale: Validation in a UK setting and development of a SIS short form and SIS index

2013

Stroke 44 2532-2535

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Journal Article

The PDQ-Carer: Development and validation of a summary index score

2013

Parkinsonism and Related Disorders 19 4 448-449

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Journal 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

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Journal 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

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Journal 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

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Journal Article

Factors influencing quality of life in caregivers of people with Parkinson’s disease and implications for clinical guidelines

2012

Parkinson’s Disease 2012

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Journal 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

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Journal 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

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Edited 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

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Book Section

Personalised care planning

2016

Shared Decision-Making in Healthcare – Achieving Evidence-Based Patient Choice

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Book Section

Engaging older patients in their treatment and care

2015

Oxford Textbook of Geriatric Medicine

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Book Section

Condition-specific measures

2014

Encyclopedia of Quality of Life and Well-Being Research 185-188

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Book Section

Disease-specific questionnaires

2014

Encyclopedia of Quality of Life and Well-Being Research 188-188

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Book Section

‘Quality’ in headache care. What is it and how can it be measured?

2011

Handbook of Headache 70-79

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Book Section

Preface

2011

Quality of Life Measures in Neurodegenerative and Related Conditions xi-xii

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Book Section

Outcome measures for informal carers of individuals with neurodegenerative conditions

2011

Quality of Life Measures in Neurodegenerative and Related Conditions 114-138

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Book Section

Translating patient-reported outcome measures (PROMs) for cross-cultural studies

2011

Quality of Life Measures in Neurodegenerative and Related Conditions 139-146

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Reports

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

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Research 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

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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