Publications

Publications will be added as soon as they become available.

 

Year Title Authors Publication Type Theme Project
2017 Maximising the value of survey data in adult social care (MAX) project Julien Forder, Karen Jones and Clara Heath. Report Application Maximising the value of survey data in adult social care (MAX) (A5.2)
2017 Max Toolkit implementation and impact study Karen Jones, Clara Heath and Diane Fox. Report Application Maximising the value of survey data in adult social care (MAX) (A5.2)
2016 Refinement of the Long-Term Conditions Questionnaire (LTCQ): Patient and expert stakeholder opinion Laura Kelly, Caroline Potter, Cheryl Hunter, Elizabeth Gibbons, Ray Fitzpatrick, Crispin Jenkinson & Michele Peters Journal article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2016 The Long-Term Conditions Questionnaire (LTCQ): Conceptual framework and item development Michele Peters, Caroline Potter, Laura Kelly, Cheryl Hunter, Elizabeth Gibbons, Crispin Jenkinson, Angela Coulter, Julien Forder, Anne-Marie Towers, Christine A’Court & Ray Fitzpatrick Journal article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2016 Living with Long-Term Conditions: Validation of the Long-Term Conditions Questionnaire (LTCQ) Laurie Batchelder Project Outline Measurement Living with long term conditions (LTQC) (M1.3)
2016 Identifying the impact of adult social care: Interpreting outcome data for use in the Adult Social Care Outcomes Framework Julien Forder, Juliette Malley, Stacey Rand, Florin Vadean, Karen Jones & Ann Netten Report Application Identifying the impact of adult social care (IIASC) (A6.2)
2016 Julien Forder, Juliette Malley, Stacey Rand, Florin Vadean, Karen Jones & Ann Netten Report Application Identifying the impact of adult social care (IIASC) (A6.2)
2015 Cancer PROMs: A Scoping Study. Report to Macmillan Cancer Suppor Michele Peters, Caroline Potter,  Angela Coulter and Ray Fitzpatrick Report  Application Use of PROMs in guiding commissioning and clinical decision-making (A3.2)
2015 The development of the long term conditions questionnaire (LTQC) Michele Peters, Cheryl Hunter, Laura Kelly, Caroline Potter, Elizabeth Gibbons, Crispin Jenkinson, Anne-Marie Towers, Julien Forder, Angela Coulter and Ray Fitzpatrick Interim Report Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2015 Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer) Stacey Rand, Juliette Malley, Julien Forder, Ann Netten Journal article  Application ASCOT
2015 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. Cheryl Hunter, Ray Fitzpatrick, Crispin Jenkinson, Ann-Sophie Emma Darlington, Angela Coulter, Julien Forder, Michele Peters Journal article  Measurement Developing PROM and outcome indicators for people with LTCs and their carers (M4.2)
2015 Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) Agnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Joanna Apps, Stacey Rand Report Engagement  ASCOT
2015 Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) Report appendix Agnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Joanna Apps, Stacey Rand Report appendix Engagement  ASCOT
2015 Making the Adult Social Care Outcomes Toolkit Easy Read Agnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Joanna Apps, Stacey Rand Easy Read version Engagement  ASCOT
2015 Personalised care planning for adults with chronic or long-term health conditions Angela Coulter, Vikki A Entwistle, Abi Eccles, Sara Ryan, Sasha Shepperd, Rafael Perera Journal article Service Delivery Reviewing and assessing person-centred care for people with long-term conditions (S1.2)
2015 How can MAX help local authorities to use social care data to inform local policy? Clara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels and Jennifer Beecham Working paper Application Maximising the value of survey data in adult social care (MAX) (A5.2)
2015 How can MAX help local authorities to use social care data to inform local policy? Clara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels and Jennifer Beecham Executive summary Application Maximising the value of survey data in adult social care (MAX) (A5.2)
2015 Further analysis of ASCS and PSS SACE data: Case studies of local authority (LA) practice Clara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels and Jennifer Beecham Case study Application Maximising the value of survey data in adult social care (MAX) (A5.2)
2015 Visual summary of main findings: how can MAX help local authorities to use social care data to inform local policy? Nat Al-Tahhan Infographic Application Maximising the value of survey data in adult social care (MAX) (A5.2)
2015 Using a ‘wellbeing’ cost-effectiveness approach to improve resource allocation in social care Julien Forder and Jose-Luis Fernandez Working paper Application Using outcomes information to improve decision-making about care and support (A1.2)
2015 On interviewing people with pets: reflections from qualitative research on people with long-term conditions Sara Ryan and Sue Ziebland Journal Article Application Patients’ and service users’ use of outcome and quality information(A2.2)
2015 Dutch translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT) Karen M van Leeuwen, Judith E Bosmans, Aaltje PD Jansen, Stacey E Rand, Ann-Marie Towers, Nick Smith, Kamilla Razik, Birgit Trukeschitz, Maurits W van Tulder, Henriette E van der Horst and Raymond W Ostelo Journal Article Measurement Supporting Ascot (M3.2)
2015 Time to deliver patient centred care Tessa Richards, Angela Coulter, Paul Wicks Journal Article Service Delivery Reviewing and assessing person-centred care for people with long-term conditions (S1.2)
2014 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 Karen M van Leeuwen, Juliette Malley, Judith E Bosmans, Aaltje P D Jansen, Raymond W Ostelo, Henriette E van der Horst and Ann Netten Journal article Measurement Supporting Ascot (M3.2)
2014 Quality of life and burden in caregivers for individuals with Parkinson’s disease Michele Peters Journal article Measurement Developing PROMS and outcomes indicators for people with long-term conditions  (M4.2)
2014 People with limiting long-term conditions report poorer experiences and more problems with hospital care Paul Hewitson, Alex Skew, Chris Graham, Crispin Jenkinson and Angela Coulter Journal article Service delivery Experiences of patients with limiting long-term conditions (S2.2)
2014

The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort survey

Michele Peters, Helen Crocker, Crispin Jenkinson, Helen Doll and Ray Fitzpatrick Journal article Application Pilot study of patient‐reported outcome measures (PROMs) in long‐term conditions in primary care
2014

Condition-specific measures

Michele Peters and Helen Boyce Book Chapter Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2014

Disease-specific questionnaires

Michele Peters and Helen Boyce Book Chapter Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2014

Collecting data on patient experience is not enough: they must be used to improve care

Angela Coulter, Louise Locock, Sue Ziebland, and Joe Calabrese Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2014

Change in health status in long-term conditions over a one year period: a cohort survey using patient-reported outcome measures

Michele Peters, Helen Crocker, Sarah Dummett, Crispin Jenkinson, Helen Doll and Ray Fitzpatrick Journal Article Application Using patient reported outcome measures (PROMs) in long term conditions in primary care (A1.1)
2013 Use of quality information in decision making about health and social care services – a systematic review Agnes Turnpenny and Julie Beadle-Brown Journal Article Application Use of data on outcomes and quality of services in decision making about services for people with intellectual disabilities and autism (A2.1)
2013 The Stroke Impact Scale: Validation in a UK setting and development of a SIS short form and SIS index Crispin Jenkinson, Ray Fitzpatrick, Helen Crocker and Michele Peters Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2013 The PDQ-Carer: Development and validation of a summary index score David Morley, Sarah Dummett, Laura Kelly, Michele Peters, J. Dawson, Ray Fitzpatrick and Crispin Jenkinson Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2013 Introductory blog posted on the Social Care Evidence in Practice (SCEiP) website hosted by the London School of Economics and Political Science Clara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels and Jennifer Beecham Blog Application Maximising the value of survey data in adult social care (MAX)
2013 Feeling in control: comparing older people’s experiences in different care settings Lisa Callaghan and Ann-Marie Towers Journal article Application Using outcome and quality data A3.1 
2013 Emerging themes and provisional ideas for how the MAX Project can help LAs maximise the use of data in adult social care Clara Heath and Juliette Malley Blog Application Maximising the value of survey data in adult social care (MAX)
2013 The factors that affect local authority use of adult social care and carers data Clara Heath and Juliette Malley Blog Application Maximising the value of survey data in adult social care (MAX)
2013 Local authority views and use of the adult social care survey and carers’ survey Clara Heath, Juliette Malley and James Caiels Blog Application Maximising the value of survey data in adult social care (MAX)
2013 Carers’ quality of life and experiences of adult social care support in England Stacey Rand and Juliette Malley Journal Article Application Identifying the impact of adult social care (IIASC) (A6.2)
2013 Pilot study of patient reported outcome measures (PROMs) in primary care Michele Peters, Helen Crocker, Sarah Dummett, Crispin Jenkinson, Helen Doll, Elizabeth Gibbons, Ramon Luengo-Fernandez and Ray Fitzpatrick Report Application Pilot study of patient‐reported outcome measures (PROMs) in long‐term conditions in primary care
2013 Report on using the GPPS to assess trends in EQ-5D scores for people with long-term conditions Jose-Luis Fernandez, Andrew Hughes, Kevin Watson, Julien Forder and Ray Fitzpatrick Report Application Exploring variation in population health and social care outcomes: implications for performance assessment in the NHS and social care outcomes frameworks (Responsive mode) (A4.2)
2013 Some considerations relating to the attribution of NHS activity to outcomes for people with long-term conditions Julien Forder, Jose-Luis Fernandez and Ray Fitzpatrick Report Application Exploring variation in population health and social care outcomes: implications for performance assessment in the NHS and social care outcomes frameworks (Responsive mode) (A4.2)
2013 Personal outcome measures and postal surveys of social care Joanna Apps, Tanya Crowther and Julien Forder Report Service Delivery Responsive %15 (R15)
2013 Using Online Reviews in Social Care Lisa Trigg Journal article Application Potential and challenges of online service quality feedback mechanisms to support service consumption decisions by social care users. (A221)
2013 Using cost-effectiveness estimates from survey data to guide commissioning: an application to home care Julien Forder, Juliette Malley, Ann-Marie Tower and Ann Netten Journal article Application Using outcomes information to improve decision-making (A1.2)
2013 Patients’ experiences of health and social care in long-term neurological conditions in England: a cross-sectional study Michele Peters, Ray Fitzpatrick, Helen Doll, E Diane Playford, Crispin Jenkinson Journal article Service Delivery Personalised care planning for people with long-term conditions (S1.1)
2013 The relationship between experiences of health services and quality of life: a cross-sectional survey with carers of three neurological conditions Michele Peters, Crispin Jenkinson, Helen Doll, E Diane Playford and Ray Fitzpatrick Journal article Service Delivery Personalised care planning for people with long-term conditions (S1.1)
2012 Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Populations Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson and Beckie Whelton Final report Engagement Reviews of methodologies for better engagement
2012 Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Populations Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson and Beckie Whelton Summary report Engagement Reviews of methodologies for better engagement
2012 Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Populations Julie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson and Beckie Whelton Easy Read summary report Engagement Reviews of methodologies for better engagement
2012 Understanding and addressing underrepresentation in a postal survey of social care users Nick Smith and Juliette Malley Final report Engagement Non-response and under-representation in the Adult Social Care Survey (E2.1)
2012 Patterns and Effects of Nonresponse in the English Adult Social Care Survey (ASCS) Juliette Malley and Jose-Luis Fernandez Final report Engagement Non-response and under-representation in the Adult Social Care Survey (E2.1)
2012 Measuring the Social Care Outcomes of Informal Carers: An Interim Technical Report for the Identifying the Impact of Social Care (IIASC) Study Stacey Rand and Juliette Malley Interim report Application Identifying the impact of adult social care (IIASC) (A6.2)
2012 A Review of the Factors that affect the Quality of Life of Carer-Care Recipient Dyads Stacey Rand Discussion paper Application Identifying the impact of adult social care (IIASC) (A6.2)
2012 “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
Sara Ryan Final report Application Use of data on outcomes and quality of services in decision making about services for people with intellectual disabilities and autism (A2.1)
2012 “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
Sara Ryan Summary report Application Use of data on outcomes and quality of services in decision making about services for people with intellectual disabilities and autism (A2.1)
2012 Unilateral versus bilateral same-day surgery outcomes for hallux valgus: an eight year prospective cohort study Jill Dawson, Michele Peters, Crispin Jenkinson, Helen Doll, Graham Lavis, Robert Sharp, Mark Rogers and Paul Cook Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2012 Quality in the provision of headache care. 1: Systematic review of the literature and commentary Suraj Perera, Elizabeth Loder, Raquel Gil Gouveia, Rigmor Jensen, Zaza Katsarava, Timothy J. Steiner, Michele Peters and Crispin Jenkinson Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2012 Quality in the provision of headache care. 2: Defining quality and its indicators Michele Peters, Crispin Jenkinson, Suraj Perera, Elizabeth Loder, Rigmor Jensen,  Zaza Katsarava, Raquel Gil Gouveia, Susan Broner and Timothy Steiner Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2012 The development and validation of a quality of life measure for the carers of people with Parkinson’s Disease (the PDQ-CARER) Crispin Jenkinson, Sarah Dummett, Laura Kelly, Michele Peters, Jill Dawson, David Morley and Ray Fitzpatrick Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2012 Factors influencing quality of life in caregivers of people with Parkinson’s disease and implications for clinical guidelines David Morley, Sarah Dummett, Michele Peters, Laura Kelly, Paul Hewitson, Jill Dawson, Ray Fitzpatrick, and Crispin Jenkinson Journal Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2011 Does self-reported well-being of patients with Parkinson’s disease influence caregiver strain and quality of life? Michele Peters, Ray Fitzpatrick, Helen Doll, E Diane Playford, Crispin Jenkinson Article Application Using patient-reported outcomes measures (PROMs) in long-term conditions in primary care A1.1 
2011 Quality’ in headache care. What is it and how can it be measured? Michele Peters, Crispin Jenkinson, Suraj Perera, Elizabeth W. Loder and Timothy J. Steiner Article Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2011 Preface”.  In C. Jenkinson, M. Peters & M. Bromberg  (eds) Quality of Life Measures in Neurodegenerative and Related Conditions Crispin Jenkinson, Michele Peters and Mark B. Bromberg Book Chapter Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2011 “Outcome measures for informal carers of individuals with neurodegenerative conditions”. In C. Jenkinson, M. Peters & M. Bromberg  (eds) Quality of Life Measures in Neurodegenerative and Related Conditions  Michele Peters Book Chapter Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)
2011 “Translating patient-reported outcome measures (PROMs) for cross-cultural studies”. In C. Jenkinson, M. Peters & M. Bromberg  (eds) Quality of Life Measures in Neurodegenerative and Related Conditions  Michele Peters Book Chapter Measurement Developing PROMS and outcomes indicators for people with long-term conditions (M4.2)