STIMULATE-ICP-Delphi (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways Delphi): Study protocol

Abstract

Introduction As mortality rates from COVID-19 disease fall, the high prevalence of long-term sequelae (Long COVID) is becoming increasingly widespread, challenging healthcare systems globally. Traditional pathways of care for Long Term Conditions (LTCs) have tended to be managed by disease-specific specialties, an approach that has been ineffective in delivering care for patients with multi-morbidity. The multi-system nature of Long COVID and its impact on physical and psychological health demands a more effective model of holistic, integrated care. The evolution of integrated care systems (ICSs) in the UK presents an important opportunity to explore areas of mutual benefit to LTC, multi-morbidity and Long COVID care. There may be benefits in comparing and contrasting ICPs for Long COVID with ICPs for other LTCs. Methods and analysis This study aims to evaluate health services requirements for ICPs for Long COVID and their applicability to other LTCs including multi-morbidity and the overlap with medically not yet explained symptoms (MNYES). The study will follow a Delphi design and involve an expert panel of stakeholders including people with lived experience, as well as clinicians with expertise in Long COVID and other LTCs. Study processes will include expert panel and moderator panel meetings, surveys, and interviews. The Delphi process is part of the overall STIMULATE-ICP programme, aimed at improving integrated care for people with Long COVID. Ethics and dissemination Ethical approval for this Delphi study has been obtained (Research Governance Board of the University of York) as have approvals for the other STIMULATE-ICP studies. Study outcomes are likely to inform policy for ICPs across LTCs. Results will be disseminated through scientific publication, conference presentation and communications with patients and stakeholders involved in care of other LTCs and Long COVID. Registration Researchregistry: https://www.researchregistry.com/browse-the-registry#home/registrationdetails/6246bfeeeaaed6001f08dadc/.

Neurological Dysfunction in Long COVID Should Not Be Labelled as Functional Neurological Disorder

“…However, in the absence of accurate diagnostic tests or proven treatments for both Long COVID and FND, greater focus must be given to exclude alternative diagnoses, and importantly ensuring patients feel supported, until a greater knowledge of both FND and Long COVID is established. Diagnostic approaches should take biological underpinnings as well as possible psychological mechanisms and the patient perspective into account [ 23 ]. Education of clinicians in the heterogeneous manifestation of Long COVID and diagnosis of FND may be needed.…”

“…This could inform further research into possible treatments such as cytokine blockers or antiviral medication in Long COVID, and cytokine blockers in FND. In terms of treatment, the STIMULATE-ICP-Delphi study explores what integrated care for Long COVID and other LTCs should look like [ 23 , 66 ], and this can include how the treatment of Long COVID with motor and balance problems might be designed.…”

“…Still in its recruitment phase, currently more than 500 patients have been recruited and are participating in the trial [ 22 ]. In addition, the STIMULATE-ICP-Delphi sub study seeks to answer the research question what are effective integrated care pathways for individuals with Long COVID and how can they be transferred to other long-term conditions [ 23 ]. This NIHR-funded research programme will inform medium and longer-term policy and health system responses.…”

STIMULATE-ICP: A pragmatic, multi-centre, cluster randomised trial of an integrated care pathway with a nested, Phase III, open label, adaptive platform randomised drug trial in individuals with Long COVID: A structured protocol

“…STIMULATE-ICP is a pragmatic, cluster-randomised trial of two components of an integrated care pathway with a nested, Phase III, open label platform randomised drug trial in individuals with LC. It is responsive to local resources and needs, reactive to changing pandemic and policy contexts and iterative , depending on ongoing results, as part of a National Institute for Health Research (NIHR: COV-LT2-0043 [ 18 ]) -funded programme ( Fig 2 ), with epidemiologic and mixed methods studies, including care inequalities and transferability to other long-term conditions [ 19 ]; IRAS 303958 [ 20 ] ) and this complex intervention trial (IRAS 1004698).…”

Learning from long COVID: integrated care for multiple long-term conditions

“…There is a need for a critical evaluation of long COVID clinics to determine how these improve outcomes and meet patient needs, including a critical analysis of patient outcomes, the availability of services, and the economic costs of MDT services, such as long COVID clinics themselves. This is ongoing in the context of the STIMULATE-ICP-Delphi study, 2 and the following relevant factors have been identified:…”