Integrated Care Priorities for Complex, Multi-System, Long-Term Conditions and for Long COVID: Results of the STIMULATE-ICP-Delphi Study Among UK Patients and Healthcare Providers

Background: Research on Long COVID to date has not explored consensus on the whole care pathway. The STIMULATE-ICP-Delphi study identified priorities for integrated care in complex long-term conditions and in Long COVID from the perspectives of patients and healthcare providers (HCPs).Methods: An explorative survey followed by a consensus and ranking survey, alternating with expert panel meetings between February-2022 and March-2023 combined contributions to identify integrated care priorities and inform policy recommendations.Findings: Nearly 500 individuals reported 461 patient and 180 healthcare provider experiences with long-term conditions(n=365) or Long COVID(n=276). Eighty percent consensus was achieved for ten priorities for Long COVID and for long-term conditions. Rankings for both groups informed policy recommendations for integrated care pathways for multi-system long-term conditions and for Long COVID that were remarkably similar. This study identified the need to allocate resources to support integrated care, aimed at enhancing access, information exchange, consultation and collaborative care between primary and specialist care settings.Interpretation: Traditionally, care pathways for long-term conditions tended to target particular disease or medical specialties. However, this approach overlooks the diversity of symptoms present in complex long-term multi-system conditions, which often necessitates a combination of medical, therapeutic, and psychological interventions. It also risks ineffective multiple separate interactions with healthcare services, with consequent poor patient experience and increased cost. Investment in integrated care pathways to enable more comprehensive consultations would aid more effective care planning and management for long-term conditions and for Long COVID alike.Funding: This research is funded by NIHR as part of the STIMULATE-ICP study (COV-LT2-0043).Declaration of Interest: This research was funded by the National Institute for Health and Care Research (NIHR) (COV-LT2- 0043). This work is independent research funded as part of the STIMULATE-ICP study. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Unless otherwise stated, funding for this project was paid to author institutions. In addition, GA has held leadership roles with the Royal College of General Practitioners and National Institute for Health and Care Excellence during the timeframe of the STIMULATE-ICP Delphi project. MG has had recent or current involvement with NIHR and UKRI research grants. MG has been involved in SDL learning as academic director (payment to institution) and as a tutor (payment to MG). He has been appointed as faculty provost for the Royal College of General Practitioners and has small holdings from demutualisations with Lloyds bank, ABRDN and Aviva. MG is part-funded by NIHR applied Research Collaboration North West Coast. KK is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration East Midlands (ARC EM) and the NIHR Leicester Biomedical Research Centre (BRC). KK is Chair of UKRI/NIHR Long- Covid studies and reports to the Chief Medical Officer. NW is Deputy chair of NIHR HTA Programme Funding Committee for commissioned research and is a GP partner in Plas Menai Health Centre, Llanfairfechan. HM has received consultation fees from Astra Zeneca and has participated on a Data Safety Monitoring Board or Advisory Board relating to prevention and treatment of COVID-19 (not Long COVID issues specifically), and has received consultation fees from Axcella Therapeutics relating to a possible new Long COVID therapeutic. HM has also received payment from the Law Society for Education on Long COVID. MH is National Specialty Advisor for Long Covid, NHS England. As PPI members of STIMULATE-ICP, AL and LH have received funding from NIHR (COV-LT2-0043) for reimbursement for attendance and travel for research meetings. AB is the Chief Investigator of the STIMULATE-ICP (COV-LT2-0043) and is part of the BigData@Heart Consortium, funded by the Innovative Medicines Initiative-2 Joint Undertaking under grant agreement No. 116074. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA; it is chaired, by DE Grobbee and SD Anker, partnering with 20 academic and industry partners and ESC. In addition, AB has had recent or current involvement with NIHR, BMA, Astra Zeneca and UKRI research grants. AB is an unpaid Trustee for the South Asian Health Foundation. CFC has had recent or current involvement with grants from the BMA (CANDO Study), EU Horizon (EMPOWER Study), the Netherlands Organisation for Health Research and Development (Regional systems intervention for suicide prevention (SUPREMOCOL) in Noord -Brabant, the Netherlands), and NIHR HS&DR (Frequent Users of the Emergency Department: Improving and Standardising Services-a mixed methods study). CFC has received royalties for books on Psychiatry, an honorarium payment related to a lecture at the Big Questions in Neuroscience Annual meeting from Janssen UK, and has received travel and accommodation in the UK for a lecture from The Lloyd Register Foundation. All other authors have no conflicts of interest to report.Ethical Approval: Reviewed and approved by the University of York Health Sciences Research Governance Committee on 17·12·2021 (HSRGC/2021/478/A: STIMULATE).