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STIMULATE-ICP-CAREINEQUAL (symptoms, trajectory, inequalities and management: understanding Long-COVID to address and transform existing integrated care pathways) study protocol: defining usual care and examining inequalities in Long Covid support

STIMULATE-ICP-CAREINEQUAL (symptoms, trajectory, inequalities and management: understanding Long-COVID to address and transform existing integrated care pathways) study protocol: defining usual care and examining inequalities in Long Covid support
STIMULATE-ICP-CAREINEQUAL (symptoms, trajectory, inequalities and management: understanding Long-COVID to address and transform existing integrated care pathways) study protocol: defining usual care and examining inequalities in Long Covid support

Introduction: individuals with Long Covid represent a new and growing patient population. In England, fewer than 90 Long Covid clinics deliver assessment and treatment informed by NICE guidelines. However, a paucity of clinical trials or longitudinal cohort studies means that the epidemiology, clinical trajectory, healthcare utilisation and effectiveness of current Long Covid care are poorly documented, and that neither evidence-based treatments nor rehabilitation strategies exist. In addition, and in part due to pre-pandemic health inequalities, access to referral and care varies, and patient experience of the Long Covid care pathways can be poor. In a mixed methods study, we therefore aim to: (1) describe the usual healthcare, outcomes and resource utilisation of individuals with Long Covid; (2) assess the extent of inequalities in access to Long Covid care, and specifically to understand Long Covid patients' experiences of stigma and discrimination. 

Methods and analysis: a mixed methods study will address our aims. Qualitative data collection from patients and health professionals will be achieved through surveys, interviews and focus group discussions, to understand their experience and document the function of clinics. A patient cohort study will provide an understanding of outcomes and costs of care. Accessible data will be further analysed to understand the nature of Long Covid, and the care received. Ethics and dissemination Ethical approval was obtained from South Central-Berkshire Research Ethics Committee (reference 303958). The dissemination plan will be decided by the patient and public involvement and engagement (PPIE) group members and study Co-Is, but will target 1) policy makers, and those responsible for commissioning and delivering Long Covid services, 2) patients and the public, and 3) academics.

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Ramasawmy, Mel
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Mu, Yi
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Clutterbuck, Donna
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Pantelic, Marija
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Lip, Gregory Y. H.
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van der Feltz-Cornelis, Christina
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Wootton, Dan
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Williams, Nefyn H
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Montgomery, Hugh
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Mallinson Cookson, Rita
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Attree, Emily
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Gabbay, Mark
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Heightman, Melissa
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Alwan, Nisreen
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Lorgelly, Paula
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STIMULATE-ICP Consortium
Ramasawmy, Mel
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Mu, Yi
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Clutterbuck, Donna
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Pantelic, Marija
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Lip, Gregory Y. H.
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van der Feltz-Cornelis, Christina
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Wootton, Dan
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Williams, Nefyn H
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Montgomery, Hugh
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Mallinson Cookson, Rita
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Attree, Emily
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Gabbay, Mark
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Heightman, Melissa
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Alwan, Nisreen
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Lorgelly, Paula
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Ramasawmy, Mel, Mu, Yi and Clutterbuck, Donna , STIMULATE-ICP Consortium (2022) STIMULATE-ICP-CAREINEQUAL (symptoms, trajectory, inequalities and management: understanding Long-COVID to address and transform existing integrated care pathways) study protocol: defining usual care and examining inequalities in Long Covid support. PLoS ONE, 17 (8 August), [e0271978]. (doi:10.1371/journal.pone.0271978).

Record type: Article

Abstract

Introduction: individuals with Long Covid represent a new and growing patient population. In England, fewer than 90 Long Covid clinics deliver assessment and treatment informed by NICE guidelines. However, a paucity of clinical trials or longitudinal cohort studies means that the epidemiology, clinical trajectory, healthcare utilisation and effectiveness of current Long Covid care are poorly documented, and that neither evidence-based treatments nor rehabilitation strategies exist. In addition, and in part due to pre-pandemic health inequalities, access to referral and care varies, and patient experience of the Long Covid care pathways can be poor. In a mixed methods study, we therefore aim to: (1) describe the usual healthcare, outcomes and resource utilisation of individuals with Long Covid; (2) assess the extent of inequalities in access to Long Covid care, and specifically to understand Long Covid patients' experiences of stigma and discrimination. 

Methods and analysis: a mixed methods study will address our aims. Qualitative data collection from patients and health professionals will be achieved through surveys, interviews and focus group discussions, to understand their experience and document the function of clinics. A patient cohort study will provide an understanding of outcomes and costs of care. Accessible data will be further analysed to understand the nature of Long Covid, and the care received. Ethics and dissemination Ethical approval was obtained from South Central-Berkshire Research Ethics Committee (reference 303958). The dissemination plan will be decided by the patient and public involvement and engagement (PPIE) group members and study Co-Is, but will target 1) policy makers, and those responsible for commissioning and delivering Long Covid services, 2) patients and the public, and 3) academics.

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Accepted/In Press date: 10 June 2022
e-pub ahead of print date: 15 August 2022
Published date: 15 August 2022
Additional Information: Publisher Copyright: © 2022 Ramasawmy et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Identifiers

Local EPrints ID: 469859
URI: http://eprints.soton.ac.uk/id/eprint/469859
ISSN: 1932-6203
PURE UUID: d87d696e-7cad-4016-883c-ea620786f31c
ORCID for Donna Clutterbuck: ORCID iD orcid.org/0000-0001-5622-3076
ORCID for Nisreen Alwan: ORCID iD orcid.org/0000-0002-4134-8463

Catalogue record

Date deposited: 27 Sep 2022 16:39
Last modified: 17 Mar 2024 04:11

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Contributors

Author: Mel Ramasawmy
Author: Yi Mu
Author: Donna Clutterbuck ORCID iD
Author: Marija Pantelic
Author: Gregory Y. H. Lip
Author: Christina van der Feltz-Cornelis
Author: Dan Wootton
Author: Nefyn H Williams
Author: Hugh Montgomery
Author: Rita Mallinson Cookson
Author: Emily Attree
Author: Mark Gabbay
Author: Melissa Heightman
Author: Nisreen Alwan ORCID iD
Author: Paula Lorgelly
Corporate Author: STIMULATE-ICP Consortium

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