Publications

Output typeAuthorsYearTitleJournal/Book titleWorkstreamTheme
Journal ArticleStacey Rand, James Caiels, Grace Collins, Julien Forder2017Developing a proxy-report version of the Adult Social Care Outcome Toolkit (ASCOT)Health and Quality of Life OutcomesEngagementDeveloping methods for wider inclusion of people with severe intellectual, communication and cognitive impairments
DP or working paperKaren Jones, Julien Forder, Elizabeth Welch, James Caiels, Diane Fox2017Personal Health Budgets: Process and context following the national pilot programmeEngagement
Journal ArticleStacey Rand, Juliette Malley2016The
factors associated with care-related quality of life of adults with
intellectual disabilities in England: implications for policy and
practice
Health and Social Care in the CommunityApplicationIdentifying the impact of Adult Social Care (IIASC)
Journal ArticleMichele Peters, Caroline Potter, Laura Kelly, Cheryl Hunter,
Elizabeth Gibbons, Crispin Jenkinson, Angela Coulter, Julien Forder,
Ann-Marie Towers, Christine A'Court, Ray Fitzpatrick
2016The Long-Term Conditions Questionnaire (LTCQ): Conceptual framework and item developmentPatient Related Outcome MeasuresMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleLaura Kelly, Caroline Potter, Cheryl Hunter, Elizabeth Gibbons, Ray Fitzpatrick, Crispin Jenkinson, Michele Peters2016Refinement of the Long-Term Conditions Questionnaire (LTCQ): Patient and expert stakeholder opinionPatient Related Outcome MeasuresMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleAngela Coulter, Graham Kramer, Tim Warren, Chris Salisbury2016Building the House of Care for people with long-term conditions: the foundation of the House of Care frameworkBritish Journal of General PracticeService deliveryPersonalised care planning for people with long-term conditions
Journal ArticleAngela Coulter2016Patient feedback for quality improvement in general practiceBritish Medical JournalService delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
Journal ArticleAgnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Stacey Rand2016Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)Journal of Applied Research in Intellectual DisabilitiesEngagementBetter engagement and response for assessing outcomes in social care
Book SectionAngela Coulter2016Patient and public involvement in healthcareHealthcare ManagementService delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
Book SectionAngela Coulter, Vikki A Entwistle2016Personalised care planningShared Decision-Making in Healthcare – Achieving Evidence-Based Patient ChoiceService deliveryPersonalised care planning for people with long-term conditions
ReportJulien Forder, Juliette Malley, Stacey Rand, Florin Vadean, Karen Jones, Ann Netten2016IIASC report: Interpreting outcomes data for use in the Adult Social Care Outcomes Framework (ASCOF)ApplicationIdentifying the impact of Adult Social Care (IIASC)
Project OutlineLaurie Batchelder2016Living with Long-Term Conditions: Validation of the Long-Term Conditions Questionnaire (LTCQ)Project outlineMeasurementLiving with long-term conditions (LTCQ)
DP or working paperJulie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson, Rebecca Whelton2016Engagement 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
EngagementLiterature review
DP or working paperFrancesco D'Amico, Juliette Malley, José-Luis Fernández2016Is the quality of home care for older people in England really
improving? Disagreements between the regulator’s and service users’
assessments
Engagement
Journal ArticleAgnes Turnpenny, Julie Beadle-Brown2015Use of quality information in decision making about health and social care services - a systematic reviewHealth and Social Care in the CommunityApplicationUse of data on outcomes and quality of services in decision making
about services for people with intellectual disabilities and autism
Journal ArticleSara Ryan, Sue Ziebland2015On interviewing people with pets: reflections from qualitative research on experiences with a long term conditionSociology of Health and IllnessApplicationPatients’ and service users’ use of outcome and quality information
Journal ArticleStacey Rand, Juliette Malley, Julien Forder, Ann Netten2015Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)Quality of Life ResearchApplicationIdentifying the impact of Adult Social Care (IIASC)
Journal ArticleKaren Van Leeuwen, J Bosmans, A Jansen, Stacey Rand, Ann-Marie
Towers, Nick Smith, Kamilla Razik, Birgit Trukeschitz, Maurits van
Tulder, H E van der Horst, R W Ostelo
2015Dutch translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT)Health and Quality of Life OutcomesMeasurementSupporting ASCOT
Journal ArticleCheryl Hunter, Ray Fitzpatrick, Crispin Jenkinson, Anne-Sophie Darlington, Angela Coulter, Julien Forder, Michele Peters2015Perspectives
from health, social care and policy stakeholders on the value of a
single self-report outcome measure across long-term conditions: A
qualitative study
BMJ OpenMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleAngela Coulter, Vikki A Entwistle, Abi Eccles, Sara Ryan, Sasha Shepperd, Rafael Perera2015Personalised care planning for adults with chronic or long-term health conditionsCochrane Database of Systematic ReviewsService deliveryPersonalised care planning for people with long-term conditions
Journal ArticleTessa Richards, Angela Coulter, Paul Wicks2015Time to deliver patient centred careBritish Medical JournalService delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
Book SectionAngela Coulter2015Engaging older patients in their treatment and care Oxford Textbook of Geriatric MedicineService delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
ReportAgnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Joanna Apps, Stacey Rand2015Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)EngagementBetter engagement and response for assessing outcomes in social care
ReportAgnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Joanna Apps, Stacey Rand2015Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) - AppendixEngagementDeveloping methods for wider inclusion of people with severe intellectual, communication and cognitive impairments
ReportAgnes Turnpenny, James Caiels, Tanya Crowther, Lisa Richardson, Rebecca Whelton, Julie Beadle-Brown, Joanna Apps, Stacey Rand2015Making the Adult Social Care Outcomes Toolkit Easy ReadEngagementDeveloping methods for wider inclusion of people with severe intellectual, communication and cognitive impairments
ReportAngela Coulter, Caroline Potter, Michele Peters, Ray Fitzpatrick2015Cancer PROMs: A Scoping Study. Report to Macmillan Cancer SupportApplicationUse of PROMs in guiding commissioning and clinical decision-making
Research SummaryStacey Rand, Juliette Malley2015Identifying the Impact of Adult Social Care (plain English summary)ApplicationIdentifying the impact of Adult Social Care (IIASC)
DP or working paperClara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels, Jennifer Beecham2015How
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
ApplicationMaximising the Value of Survey Data in Adult Social Care (MAX) (previously ASCS and ASCOF development and support)
DP or working paperJulien Forder, José-Luis Fernández2015Using a ‘wellbeing’ cost-effectiveness approach to improve resource allocation in social careApplicationUsing outcomes information to improve decision-making about care and support
DP or working paperClara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels, Jennifer Beecham2015How can MAX help local authorities to use social care data to inform local policy? (Executive summary)ApplicationMaximising the Value of Survey Data in Adult Social Care (MAX) (previously ASCS and ASCOF development and support)
DP or working paperClara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels, Jennifer Beecham2015How can MAX help local authorities to use social care data to inform local policy? (Infographic)ApplicationMaximising the Value of Survey Data in Adult Social Care (MAX) (previously ASCS and ASCOF development and support)
DP or working paperClara Heath, Kamilla Razik, Karen Jones, Jennifer Beecham, Julien Forder, Juliette Malley2015Further analysis of ASCS and PSS SACE data: Case studies of local authority (LA) practiceApplicationMaximising the Value of Survey Data in Adult Social Care (MAX) (previously ASCS and ASCOF development and support)
DP or working paperClara Heath, Juliette Malley, Kamilla Razik, Karen Jones, Julien Forder, Diane Fox, James Caiels, Jennifer Beecham2015How
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
ApplicationMaximising the Value of Survey Data in Adult Social Care (MAX) (previously ASCS and ASCOF development and support)
Conference presentation outputJuliette Malley, Stacey Rand2015Quality of life of older adults who use social care support and their unpaid carersApplicationIdentifying the impact of Adult Social Care (IIASC)
Conference presentation outputStacey Rand2015The Adult Social Care Outcomes Toolkit for CarersMeasurementSupporting ASCOT
Conference presentation outputMichele Peters, Caroline Potter, Laura Kelly, Cheryl Hunter,
Elizabeth Gibbons, Julien Forder, Ann-Marie Towers, Crispin Jenkinson,
Angela Coulter, Ray Fitzpatrick
2015The long-term conditions questionnaire (LTCQ): a patient-reported outcome measureMeasurementLiving with long-term conditions (LTCQ)
Conference presentation outputOlena Nizalova, Julien Forder, Katerina Gousia2015Body Mass, Physical Activity and Future Care NeedsApplicationUse of outcome measures in (commissioning) choices about care
Conference presentation outputAngela Coulter, Ben Mearns2015Patient 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
Service delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
Journal ArticleLisa Callaghan, Ann-Marie Towers2014Feeling in control: comparing older people’s experiences in different care settingsAgeing and SocietyApplicationUse of outcome measures in (commissioning) choices about care
Journal ArticleLisa Trigg2014Using online reviews in social careSocial Policy and AdministrationApplicationPotential and challenges of online service quality feedback
mechanisms to support service consumption decisions by social care users
Journal ArticleStacey Rand, Juliette Malley2014Carers' quality of life and experiences of adult social care support in EnglandHealth and Social Care in the CommunityApplicationUse of outcome measures in (commissioning) choices about care
Journal ArticleJulien Forder, Juliette Malley, Ann-Marie Towers, Ann Netten2014Using cost-effectiveness estimates from survey data to guide commissioning: an application to home careHealth EconomicsApplicationUse of outcome measures in (commissioning) choices about care
Journal ArticleMichele Peters, Helen Crocker, Crispin Jenkinson, Helen Doll, Ray Fitzpatrick2014The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort surveyBMJ OpenApplicationUsing patient-reported outcomes measures (PROMs) in long-term conditions in primary care
Journal ArticleMichele Peters, Helen Crocker, Sarah Dummett, Crispin Jenkinson, Helen Doll, Ray Fitzpatrick2014Change in health status in long-term conditions over a one year period: a cohort survey using patient-reported outcome measuresHealth and Quality of Life OutcomesApplicationUsing patient-reported outcomes measures (PROMs) in long-term conditions in primary care
Journal ArticleKaren Van Leeuwen, Juliette Malley, J Bosmans, A Jansen, R W Ostelo, H E van der Horst, Ann Netten2014What
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
Health and PlaceMeasurementSupporting ASCOT
Journal ArticleMichele Peters2014Quality of life and burden in caregivers for individuals with Parkinson’s diseaseFocus on Parkinson’s DiseaseMeasurementLiving with long-term conditions (LTCQ)
Journal ArticlePaul Hewitson, Alex Skew, Chris Graham, Crispin Jenkinson, Angela Coulter2014People with limiting long-term conditions report poorer experiences and more problems with hospital careBMC Health Services ResearchService delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
Journal ArticleAngela Coulter, Louise Locock, Sue Ziebland, Joseph Calabrese2014Collecting data on patient experience is not enough: they must be used to improve careBritish Medical JournalMeasurementLiving with long-term conditions (LTCQ)
Book SectionMichele Peters, H Boyce2014Condition-specific measuresEncyclopedia of Quality of Life and Well-Being ResearchMeasurementLiving with long-term conditions (LTCQ)
Book SectionMichele Peters, H Boyce2014Disease-specific questionnairesEncyclopedia of Quality of Life and Well-Being ResearchMeasurementLiving with long-term conditions (LTCQ)
ReportNick Smith, Juliette Malley2014Understanding and addressing underrepresentation in a postal survey of social care users. SummaryEngagementNon-response analysis and review
DP or working paperJuliette Malley, José-Luis Fernández2014Generating ‘Adjusted’ Indicators from Social Care Survey DataApplicationUsing outcomes information to improve decision-making
DP or working paperKamilla Razik, Jennifer Beecham2014Review of factors important in use of survey data for quality and performance improvement: Report from literature reviewApplicationMaximising the Value of Survey Data in Adult Social Care (MAX) (previously ASCS and ASCOF development and support)
Conference presentation outputNick Smith2014Using ASCOT to improve care practice and monitor quality in care homesMeasurementSupporting ASCOT
Conference presentation outputAnn-Marie Towers, Nick Smith2014How 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
MeasurementSupporting ASCOT
Journal ArticleMichele Peters, Ray Fitzpatrick, Helen Doll, E Diane Playford, Crispin Jenkinson2013Patients’ experiences of health and social care in long-term neurological conditions in England: a cross-sectional studyJournal of Health Services Research and PolicyMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleAngela Coulter, Vikki A Entwistle, Abi Eccles, Sara Ryan, Sasha Shepperd, Rafael Perera2013Personalised care planning for adults with long-term (chronic) conditionsCochrane Database of Systematic ReviewsService delivery(strand 1) Reviewing and assessing person-centred care for people with long-term conditions
Journal ArticleCrispin Jenkinson, Ray Fitzpatrick, Helen Crocker, Michele Peters2013The Stroke Impact Scale: Validation in a UK setting and development of a SIS short form and SIS indexStrokeMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleD Morley, Sarah Dummett, Laura Kelly, Michele Peters2013The PDQ-Carer: Development and validation of a summary index scoreParkinsonism and Related DisordersMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleMichele Peters, Crispin Jenkinson, Helen Doll, E Diane Playford, Ray Fitzpatrick2013The
relationship between experiences of health services and quality of
life: a cross-sectional survey with carers of three neurological
conditions
Health and Quality of Life OutcomesService deliveryPersonalised care planning for people with long-term conditions
ReportMichele Peters, Helen Crocker, Sarah Dummett, Crispin Jenkinson,
Helen Doll, Elizabeth Gibbons, Ramon Luengo-Fernandez, Ray Fitzpatrick
2013Pilot study of patient reported outcome measures (PROMs) in primary careApplicationUsing patient-reported outcomes measures (PROMs) in long-term conditions in primary care
ReportJosé-Luis Fernández, Andrew Hughes, Kevin Watson, Julien Forder, Ray Fitzpatrick2013Report on using the GPPS to assess trends in EQ-5D scores for people with long-term conditionsApplicationGP patient survey quality of life analysis
ReportJulien Forder, José-Luis Fernández, Ray Fitzpatrick2013Some considerations relating to the attribution of NHS activity to outcomes for people with long-term conditionsApplicationGP patient survey quality of life analysis
ReportJoanna Apps, Tanya Crowther, Julien Forder2013Personal outcome measures and postal surveys of social careR15Responsive 15%
Journal ArticleMichele Peters, Suraj Perera, Elizabeth Loder, Crispin Jenkinson,
Raquel Gil Gouveia, Rigmor Jensen, Zaza Katsarava, Timothy Steiner
2012Quality in the provision of headache care. 1: Systematic review of the literature and commentaryJournal of Headache and PainMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleCrispin Jenkinson, Sarah Dummett, Laura Kelly, Michele Peters, Laura Dawson, D Morley, Ray Fitzpatrick2012The development and validation of a quality of life measure for the carers of people with Parkinson’s Disease (the PDQ-CARER)Parkinsonism and Related DisordersMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleD Morley, Sarah Dummett, Michele Peters, Laura Kelly, Paul Hewitson, Jill Dawson, Ray Fitzpatrick, Crispin Jenkinson2012Factors influencing quality of life in caregivers of people with Parkinson’s disease and implications for clinical guidelinesParkinson’s DiseaseMeasurementLiving with long-term conditions (LTCQ)
Journal ArticleMichele Peters, Ray Fitzpatrick, Helen Doll, E Diane Playford, Crispin Jenkinson2012The impact of perceived lack of support provided by health and social services to caregivers of people with motor neuron diseaseAmyotrophic Lateral SclerosisService deliveryPersonalised care planning for people with long-term conditions
ReportNick Smith, Juliette Malley2012Understanding and addressing underrepresentation in a postal survey of social care users. Full reportEngagementNon-response analysis and review
ReportSara Ryan2012"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)
ApplicationPatients’ and service users’ use of outcome and quality information
Research SummarySara Ryan2012"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)
ApplicationUse of data on outcomes and quality of services in decision making
about services for people with intellectual disabilities and autism
Research SummaryJulie Beadle-Brown, Sara Ryan, Karen Windle, Jacquetta Holder, Agnes Turnpenny, Nick Smith, Lisa Richardson, Rebecca Whelton2012Engagement
of People with Long-Term Conditions in Health and Social Care Research:
Barriers and Facilitators to Capturing the Views of Seldom Heard
Populations. Summary
EngagementLiterature review
DP or working paperStacey Rand, Juliette Malley2012Measuring
the Social Care Outcomes of Informal Carers: An Interim Technical
Report for the Identifying the Impact of Adult Social Care (IIASC)
ApplicationIdentifying the impact of Adult Social Care (IIASC)
Journal ArticleMichele Peters, Ray Fitzpatrick, Helen Doll, E Diane Playford, Crispin Jenkinson2011Does self-reported well-being of patients with Parkinson’s disease influence caregiver strain and quality of life?Parkinsonism and Related DisordersApplicationUsing patient-reported outcomes measures (PROMs) in long-term conditions in primary care
Edited BookCrispin Jenkinson, Michele Peters, Mark Bromberg2011Quality of Life Measures in Neurodegenerative and Related ConditionsMeasurementLiving with long-term conditions (LTCQ)
Book SectionMichele Peters, Crispin Jenkinson, Suraj Perera, Elizabeth Loder2011‘Quality’ in headache care. What is it and how can it be measured?Handbook of HeadacheMeasurementLiving with long-term conditions (LTCQ)
Book SectionCrispin Jenkinson, Michele Peters, Mark Bromberg2011PrefaceQuality of Life Measures in Neurodegenerative and Related ConditionsMeasurementLiving with long-term conditions (LTCQ)
Book SectionMichele Peters2011Outcome measures for informal carers of individuals with neurodegenerative conditionsQuality of Life Measures in Neurodegenerative and Related ConditionsMeasurementLiving with long-term conditions (LTCQ)
Book SectionMichele Peters2011Translating patient-reported outcome measures (PROMs) for cross-cultural studiesQuality of Life Measures in Neurodegenerative and Related ConditionsMeasurementLiving with long-term conditions (LTCQ)