STIMULATE-ICP: Delphi Project
STIMULATE-ICP (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways)
Introduction
As we learn more about COVID-19 and are better able to support people, it has become clear that many people experience long-term symptoms relating to a COVID-19 infection (Long COVID). This is a challenge for healthcare. Traditionally, care pathways for long-term conditions are focused on single diseases; however, that approach is ineffective at supporting people with more than one long-term condition or those with medically not yet explained symptoms. Long COVID usually presents with clusters of symptoms, which may change over time. Therefore, healthcare services have to take a broader approach to care, focusing on more than one system (biological, psychological and social, which together are called a biopsychosocial approach). This is called an integrated care pathway. Integrated care involves the whole pathway from primary care to specialist and rehabilitation services.
In the UK, integrated care pathways offer an opportunity to explore the benefits of an integrated approach to care for Long COVID, long-term conditions and multiple long-term conditions. This study seeks to answer the broad research question: What are effective integrated care pathways for individuals with Long COVID and how can they be transferred to other long-term conditions including mental disorders, multiple long-term conditions and the interface between known medical disorders and medically not yet explained symptoms as well as newly developed conditions?
This Delphi study will investigate:
1. (a) Key enabling elements for effective integrated care pathways for individuals with long COVID, based on user experience, and (b) Strengths of existing integrated care pathways for other long-term conditions.
2. Which (part of an) integrated care pathway model for Long COVID can be transferred to other long-term conditions for which care pathways were not yet developed sufficiently, and how.
3. Variations in uptake and adherence to treatment in Long COVID and long-term conditions.
This Delphi study is a sub-study of the STIMULATE-ICP project (Symptoms, Trajectory, Inequalities and Management: Understanding Long COVID to Address and Transform Existing Integrated Care Pathways).
How does a Delphi project work?
A Delphi project is used in research to generate agreement among experts about a particular area of interest. The project expert panel seeking agreement is a diverse group of people with lived experience and professional experience of Long COVID and long term conditions who will meet at set points during the project to make decisions.
What will happen?
This Delphi project has three main phases:
1. An initial survey (Survey 1) focused on learning about the people, services and treatments currently available for Long COVID and other long-term conditions. The findings from this survey were reviewed by an expert panel to create a series of statements about current care.
2. A second survey will check whether people from across the UK agree with the statements created from the first survey.
3. The level of agreement with each statement will help the expert panel form a set of Key Recommendations which will be sent to healthcare commissioners and policymakers.
What stage is the project at now?
Earlier this year we ran two surveys to collect information from people across the UK about what integrated care for Long COVID and other long-term conditions should look like.
305 people responded to the first survey: 47% were women, people were aged between 21 and 75, living across the UK and were from a range of ethnic groups. Many people reported having multiple relevant experiences: 224 had lived experience of long COVID; 123 had lived experience of long-term condition; 35 were healthcare professionals supporting people with Long COVID; and 61 were healthcare professionals supporting people with long-term conditions. Survey respondents told us what they felt integrated care should look like.
We organised the information collected from survey 1 and, with the help of our expert panel, used the survey responses to create a series of statements about what integrated care should look like. We then launched a second Delphi survey for people across the UK to find out whether these statements are considered to be appropriate and relevant.
197 people responded to the second survey: 60% were women, people were aged between 18 and 74, living across the UK and were from a range of ethnic groups. This survey asked people to indicate whether they agreed with a series of 15 statements about what care for Long COVID and long term conditions should include. After indicating whether the statements were important, each person was asked to put the statements in order of priority form them (1 being the most important statement, 15 being the least important).
The second survey has now closed and we have analysed the data. This information is being used to develop policy recommendations for care providers supporting people with Long COVID and other long term conditions.
A final meeting of the expert panel took place in February 2023 to agree the policy recommendations from this work. We invited stakeholders who support people with Long COVID and other long term conditions to a meeting to discuss these recommendations. The final recommendations for this project will be shared with healthcare providers, commissioners and policy-makers to shape future care for Long COVID and other long-term conditions.
The Delphi team at York have contributed to a UK Parliament Integration of primary and community care Inquiry.
Where will I be able to see the results of this project?
The Key Recommendations will be shared on this website and may also be shared via social media. In addition, we will write a research article which will be shared with the scientific community.
Who is doing the study?
The study is part of the STIMULATE-ICP research (https://www.stimulate-icp.org/) and is funded by the National Institute of Health Research (NIHR), UK. The study team involves a wide range of researchers and people both with lived experiences of Long COVID, long-term conditions and clinicians who support these groups of people from a range of health service settings. This survey has been developed with input from all groups and is the result of this collaboration. This study is being led by Prof. Christina Van Der Feltz-Cornelis, Department of Health Sciences, University of York, UK, together with her clinical co-lead Prof. Gail Allsopp and her PPI co-leads.
Who has reviewed the study?
This study was reviewed an approved by the University of York Health Sciences Research Governance Committee on 17th December 2021 (HSRGC/2021/478/A: STIMULATE).
I have a question, who can I contact?
For any questions about this Delphi project, please contact Jenny Sweetman at jennifer.sweetman@york.ac.uk
Do watch our patient-led video on this part of the study below.
