A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol

BackgroundThe stopping overmedication of people with a learning disability, autism, or both (STOMP) programme was launched in 2016 in response to concerns about the over-prescribing of medication in people with intellectual disability. The programmes focus has been on the withdrawal of antipsychotic...

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Main Authors: Emily Stanyard, Helen Neilens, Victoria Allgar, Matthew Bailey, Crispin Musicha, Kiran Purandare, Bhathika Perera, Ashok Roy, Indermeet Sawhney, Lance Watkins, Sujeet Jaydeokar, Sarah Lennard, Sarah Mitchell, Paula McGowan, Richard Laugharne, Samuel J. Tromans, Rohit Shankar
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Language:English
Published: Frontiers Media S.A. 2025-05-01
Series:Frontiers in Health Services
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Online Access:https://www.frontiersin.org/articles/10.3389/frhs.2025.1393805/full
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author Emily Stanyard
Helen Neilens
Victoria Allgar
Victoria Allgar
Matthew Bailey
Crispin Musicha
Kiran Purandare
Bhathika Perera
Ashok Roy
Indermeet Sawhney
Lance Watkins
Lance Watkins
Sujeet Jaydeokar
Sujeet Jaydeokar
Sarah Lennard
Sarah Lennard
Sarah Mitchell
Sarah Mitchell
Paula McGowan
Richard Laugharne
Richard Laugharne
Samuel J. Tromans
Samuel J. Tromans
Rohit Shankar
Rohit Shankar
author_facet Emily Stanyard
Helen Neilens
Victoria Allgar
Victoria Allgar
Matthew Bailey
Crispin Musicha
Kiran Purandare
Bhathika Perera
Ashok Roy
Indermeet Sawhney
Lance Watkins
Lance Watkins
Sujeet Jaydeokar
Sujeet Jaydeokar
Sarah Lennard
Sarah Lennard
Sarah Mitchell
Sarah Mitchell
Paula McGowan
Richard Laugharne
Richard Laugharne
Samuel J. Tromans
Samuel J. Tromans
Rohit Shankar
Rohit Shankar
author_sort Emily Stanyard
collection DOAJ
description BackgroundThe stopping overmedication of people with a learning disability, autism, or both (STOMP) programme was launched in 2016 in response to concerns about the over-prescribing of medication in people with intellectual disability. The programmes focus has been on the withdrawal of antipsychotic treatment for the individual person than the service or dosage optimisation. It could be that cumulative service level antipsychotic treatment converted and presented as chlorpromazine units could allow for comparison of services on how antipsychotic treatment is being utilised and allow for comparing of practices between services in different regions. The aim of this feasibility study is to explore if cumulative service scores of antipsychotic treatment burden could define prescribing patterns across different specialist intellectual disability services in England and Wales, focused on those on ≥2 antipsychotic treatments. There is no evidence to use ≥2 antipsychotic treatments for any individual.MethodsThe study is a feasibility cross-sectional study investigating service antipsychotic treatment cumulative burden at seven annual time points, 2017–2023. De-identified data for adult patients with intellectual disability under the care of specialist intellectual disability services in receipt of ≥2 oral and/or long-acting IM (intramuscular) injectable (depot) antipsychotic treatments are included. Demographic and clinical data will be collated, in addition to information on the prescribed antipsychotic treatments. The data will be evaluated for data completeness and will be inputted into the Statistical Process Control tool. Outcomes will be measured using a combination of methods including descriptive analysis (including mean, standard deviation and percentage values), and a mixed effects regression model, to determine changes in chlorpromazine equivalent dose values over time.ResultsSeven England and Wales National Health Service intellectual disability services are recruiting up to 490 people. There were recognised challenges in identifying the relevant eligible cohort across services and administering a common set of outcome measures.DiscussionThis study is intended to inform decisions to design a wider registry that would involve antipsychotic treatment prescribing data for patients across multiple sites nationwide. Developing a de-identified database using routinely collected data, without the requirement for informed consent, comes with unique benefits and challenges.Registry referenceNCT06238089 (www.clinicaltrials.gov).
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spelling doaj-art-1f69fbd25b2e4ea4afec3af7c37621ee2025-08-20T02:28:20ZengFrontiers Media S.A.Frontiers in Health Services2813-01462025-05-01510.3389/frhs.2025.13938051393805A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocolEmily Stanyard0Helen Neilens1Victoria Allgar2Victoria Allgar3Matthew Bailey4Crispin Musicha5Kiran Purandare6Bhathika Perera7Ashok Roy8Indermeet Sawhney9Lance Watkins10Lance Watkins11Sujeet Jaydeokar12Sujeet Jaydeokar13Sarah Lennard14Sarah Lennard15Sarah Mitchell16Sarah Mitchell17Paula McGowan18Richard Laugharne19Richard Laugharne20Samuel J. Tromans21Samuel J. Tromans22Rohit Shankar23Rohit Shankar24Peninsula Clinical Trials Unit, University of Plymouth, Plymouth, United KingdomPeninsula Clinical Trials Unit, University of Plymouth, Plymouth, United KingdomPeninsula Clinical Trials Unit, University of Plymouth, Plymouth, United KingdomMedical Statistics Group, University of Plymouth, Plymouth, United KingdomPeninsula Clinical Trials Unit, University of Plymouth, Plymouth, United KingdomMedical Statistics Group, University of Plymouth, Plymouth, United KingdomThe Learning Disabilities Directorate, Central & NW London NHS Foundation Trust, London, United KingdomDepartment of Psychiatry, University CollegeLondon, United KingdomDepartment of Psychiatry of Intellectual Disability, Coventry and Warwickshire Partnership NHS Trust, Coventry, United KingdomLearning Disability Team, Hertfordshire Partnership University NHS Foundation Trust, St Albans, United KingdomUnit for Development in Intellectual and Developmental Disabilities, University of South Wales, Pontypridd, United KingdomCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, United KingdomCentre for Autism, Neurodevelopmental Disorders, and Intellectual Disability, Cheshire and Wirral Partnership NHS Foundation Trust, Chester, United Kingdom0Chester Medical School, University of Chester, Chester, United KingdomCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, United Kingdom1CIDER, Cornwall Partnership NHS Foundation Trust, Cornwall, United KingdomCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, United Kingdom1CIDER, Cornwall Partnership NHS Foundation Trust, Cornwall, United KingdomCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, United KingdomCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, United Kingdom1CIDER, Cornwall Partnership NHS Foundation Trust, Cornwall, United Kingdom2Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, United Kingdom3SAPPHIRE Group, Department of Population Health Sciences, University of Leicester, Leicester, United KingdomCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, United Kingdom1CIDER, Cornwall Partnership NHS Foundation Trust, Cornwall, United KingdomBackgroundThe stopping overmedication of people with a learning disability, autism, or both (STOMP) programme was launched in 2016 in response to concerns about the over-prescribing of medication in people with intellectual disability. The programmes focus has been on the withdrawal of antipsychotic treatment for the individual person than the service or dosage optimisation. It could be that cumulative service level antipsychotic treatment converted and presented as chlorpromazine units could allow for comparison of services on how antipsychotic treatment is being utilised and allow for comparing of practices between services in different regions. The aim of this feasibility study is to explore if cumulative service scores of antipsychotic treatment burden could define prescribing patterns across different specialist intellectual disability services in England and Wales, focused on those on ≥2 antipsychotic treatments. There is no evidence to use ≥2 antipsychotic treatments for any individual.MethodsThe study is a feasibility cross-sectional study investigating service antipsychotic treatment cumulative burden at seven annual time points, 2017–2023. De-identified data for adult patients with intellectual disability under the care of specialist intellectual disability services in receipt of ≥2 oral and/or long-acting IM (intramuscular) injectable (depot) antipsychotic treatments are included. Demographic and clinical data will be collated, in addition to information on the prescribed antipsychotic treatments. The data will be evaluated for data completeness and will be inputted into the Statistical Process Control tool. Outcomes will be measured using a combination of methods including descriptive analysis (including mean, standard deviation and percentage values), and a mixed effects regression model, to determine changes in chlorpromazine equivalent dose values over time.ResultsSeven England and Wales National Health Service intellectual disability services are recruiting up to 490 people. There were recognised challenges in identifying the relevant eligible cohort across services and administering a common set of outcome measures.DiscussionThis study is intended to inform decisions to design a wider registry that would involve antipsychotic treatment prescribing data for patients across multiple sites nationwide. Developing a de-identified database using routinely collected data, without the requirement for informed consent, comes with unique benefits and challenges.Registry referenceNCT06238089 (www.clinicaltrials.gov).https://www.frontiersin.org/articles/10.3389/frhs.2025.1393805/fullintellectual disabilitylearning disabilityantipsychoticpsychotropicoverprescribing
spellingShingle Emily Stanyard
Helen Neilens
Victoria Allgar
Victoria Allgar
Matthew Bailey
Crispin Musicha
Kiran Purandare
Bhathika Perera
Ashok Roy
Indermeet Sawhney
Lance Watkins
Lance Watkins
Sujeet Jaydeokar
Sujeet Jaydeokar
Sarah Lennard
Sarah Lennard
Sarah Mitchell
Sarah Mitchell
Paula McGowan
Richard Laugharne
Richard Laugharne
Samuel J. Tromans
Samuel J. Tromans
Rohit Shankar
Rohit Shankar
A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol
Frontiers in Health Services
intellectual disability
learning disability
antipsychotic
psychotropic
overprescribing
title A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol
title_full A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol
title_fullStr A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol
title_full_unstemmed A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol
title_short A novel way to understand and communicate the burden of AntiPsycHotic prescribing for adults across specialist Intellectual Disability services in England and Wales: the APHID feasibility study protocol
title_sort novel way to understand and communicate the burden of antipsychotic prescribing for adults across specialist intellectual disability services in england and wales the aphid feasibility study protocol
topic intellectual disability
learning disability
antipsychotic
psychotropic
overprescribing
url https://www.frontiersin.org/articles/10.3389/frhs.2025.1393805/full
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