PACE PDG-3
Research type
Research Study
Full title
A Patient-centred approach to understanding the barriers to ACcessing and Engaging with asthma care (PACE)
IRAS ID
341236
Contact name
Hilary Pinnock
Contact email
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
What is the problem?
Adults and children living with asthma in the UK have worse control and suffer more asthma attacks than people in other high-income European countries. UK guidelines recommend management that could improve outcomes but, for a range of reasons, best (or even adequate care) is too often not accessible or does not engage patients.What does the PACE research programme aim to do?
Our long-term aim is to improve services so that people with poorly controlled asthma can access and engage with care that meets their individual needs and preferences. However, before we develop new ideas, we need to understand the range of barriers that prevent people with asthma accessing and engaging with care in the UK.In this study we will:
-Summarise findings from other research to find out what other countries or places across the UK have done to improve how people with asthma engage with care.
-Use routine health service data to identify areas in the UK where asthma outcomes are particularly poor and explore how people in those areas use (or not) asthma services.
-Scope the range of ‘real world’ problems faced by different communities and care providers by interviewing people with asthma and doctors and nurses in general practices and hospitals about asthma care in their area.When we have understood why people with asthma find it difficult to access or engage with appropriate care, we will develop a proposal for future research to improve access to and engagement with asthma services. In a full programme grant, we can design, test, refine and evaluate novel cost-effective service models to provide good asthma care for all.
When we have understood why people with asthma find it difficult to access or engage with appropriate care, we will develop a proposal for future research to improve access to and engagement with asthma services.
Lay summary of study results: What did the PACE study aim to do?
Adults and children/young people living with asthma in the UK suffer more asthma attacks than people in other high-income countries. Many do not attend routine asthma reviews and do not take regular preventer medication. We aimed to understand the reasons that prevent people with asthma receiving the care they need.Our study had three parts:
• Summarising findings from previous research.
• Using routine healthcare data to explore engagement with asthma care.
• Interviewing people with asthma and professionals about their experience of asthma care.What did you find?
There are many reasons why people with asthma do not engage with care:
• Many people who did not attend their asthma review had few symptoms and no attacks.
• Worryingly, some ‘non-attenders’ had poor control and had needed emergency treatment for an attack.
• Some people had experienced a review that was not tailored for them - sometimes described as ‘tick box exercises’.
• Healthcare professionals said that that person-centred care was not enabled by over-stretched systems.
• Practical problems included living in remote areas, language barriers, needing time off work. Healthcare professionals described struggling with busy practices and high staff turnover.How will you share your findings?
We will publish the findings, tell colleagues at conferences, and use social media to share findings. We will talk with policy-makers and colleagues from other asthma projects to discuss ideas for changes that could improve how asthma care is delivered.Patient and public involvement (PPI)
Patient colleagues have been involved throughout the project. They have joined discussion groups, co-designed patient participant information sheet and advised on interview topic guides. They also took part in expert panel workshops.Conclusion
Healthcare systems should consider how they can make asthma reviews more flexible so they can be tailored to individual need and made easier for people to access.REC name
North West - Liverpool Central Research Ethics Committee
REC reference
24/NW/0124
Date of REC Opinion
14 May 2024
REC opinion
Further Information Favourable Opinion