PLoS ONE (Jan 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.

  • Mel Ramasawmy,
  • Yi Mu,
  • Donna Clutterbuck,
  • Marija Pantelic,
  • Gregory Y H Lip,
  • Christina van der Feltz-Cornelis,
  • Dan Wootton,
  • Nefyn H Williams,
  • Hugh Montgomery,
  • Rita Mallinson Cookson,
  • Emily Attree,
  • Mark Gabbay,
  • Melissa Heightman,
  • Nisreen A Alwan,
  • Amitava Banerjee,
  • Paula Lorgelly,
  • STIMULATE-ICP Consortium

DOI
https://doi.org/10.1371/journal.pone.0271978
Journal volume & issue
Vol. 17, no. 8
p. e0271978

Abstract

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IntroductionIndividuals 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 analysisA 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 disseminationEthical 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.