The TRED HF2 study follows on from the original TRED study carried out in 2019. This time we are investigating whether some medications are more important than others for staying well after remission from heart failure in people with dilated cardiomyopathy (DCM).

We are looking to interview both patients and clinicians connected to the TRED HF2 trial. For patient interviews we are looking for people with DCM who are taking medications and who have few or no symptoms of heart failure (such as breathlessness and fatigue).

We will explore their perspectives on taking heart failure medications as well as the motivations for taking part in the TRED HF2 study, expectations about the results and how these may influence future care.

We will ask clinicians about their perspectives from conversations with patients who have DCM.

The Airwave Health Monitoring Study and Tissue Bank is an epidemiological study of police officers and staff in Great Britain and is the largest cohort study of police staff and officers in the world. It was established in 2004 to investigate possible long-term health effects associated with the use of TETRA, the personal radio system used by the police service, although the cohort now supports broader research into common diseases affecting this well-defined occupational group.

As part of PERC’s work in supporting the Airwave research team to develop a participant advisory group, we have been conducting research into participants’ experiences of the study. This opportunity was provided by the unexpectedly large volume of participants who submitted an expression of interest to join the advisory group and has allowed us to learn more about why people choose to take part in epidemiological research, what keeps them invested over time, and the kinds of health issues they think should be research priorities moving forward. 

We have now completed a survey with 241 participants and over the coming months will be conducting follow-up interviews with participants. Preliminary findings suggest that this research will produce valuable insights into people’s motivations for participating in health research, how the relationship between research and clinical care is conceptualised, and best practices for communication. 

Prospective Planning for Escalation of Care and Treatment

 Summary 

People are now living longer, but many are frail or have long-term health conditions.  

This group of people are more likely to have an acute health event. Acute health events are those in which you may be so unwell that you require an emergency admission to a hospital or the intensive care unit (ICU). The benefits of admission to hospital or the ICU for this group of people is not always clear. They may find hospital or ICU treatment burdensome. They may also find it difficult to get back to their previous level of function following a hospital admission.  

People living with frailty and long-term health conditions are rarely asked what they would want when faced with an acute health event. This means that people are not given the chance to think about and discuss what kind of care they would want in the future if they became unwell.  

Our Study:  

We wanted to help people living with long-term conditions and frailty to make decisions about how they would want to be cared for if they became unwell.  

In Phase One of this project, we held interviews and focus groups (group discussions) with people living with long-term conditions, their families and healthcare professionals. We were particularly interested in how people make decisions related to acute health events. We wanted to know what information and materials might support this process. 

Phase Two of this project included a series of co-design workshops. This means the researchers worked together with people living with long-term conditions, their families and healthcare professionals.  We  developed information materials based on what we  learnt from the first phase of the study. We hope that the materials that we developed will support people to make these important decisions.  

Full study title: 

The ProsPECT Study:  Prospective Planning for Escalation of Care and Treatment 

Sponsorship, funding and ethical approval:         

This project was being sponsored by Imperial College London and is funded by the National Institute for Health Research (NIHR) Imperial Biomedical Research Centre. The London-Chelsea Research Ethics Committee has approved this study (REC Reference 21/LO/0125).  

Recent PhD projects

Vas Papageorgiou 

 Title - Determinants of health & wellbeing among PLHIV in the UK 

A mixed-methods PhD exploring the impact of social/structural factors, and COVID-19, on the health and wellbeing of people living with HIV. The quantitative component will use data from the 2017 Positive Voices study and the qualitative component will include a participatory research approach in collaboration with the peer-led HIV support charity, Positively UK. 

 Link to further detail on PhD: https://liss-dtp.ac.uk/student/2019-20/vasiliki-papageorgiou/ 

Link to detail on qual project: https://www.imperial.ac.uk/patient-experience-research-centre/covid-19/covid-19-research/hiv-care/

Flav Coukan 

Title - Barriers and facilitators to PrEP access in underserved populations in England. 

A mixed-methods PhD project exploring the barriers and facilitators that underserved communities face to access PrEP in England. The quantitative part of the project will use a combination GUMCAD and HARS data to investigate the need for PrEP in underserved communities which will inform which of those communities should be invited for the qualitative component of the PhD. The qualitative part will follow a participatory methodology to co-design novels strategies of PrEP delivery in collaborations with representatives of the identified underserved populations." 

Qualitative Sub-Study of TRED-HF

Dilated cardiomyopathy (DCM) is a condition where the heart muscle stretches, and the left ventrical becomes enlarged which can lead to heart failure. DCM presents differently in patients, with varying symptoms; severe DCM can result in a worsened quality of life and can be life limiting. No cure exists however, medical and device therapies can improve prognosis and symptoms. Some patients do not present any symptoms and frequently ask their clinical care team whether thay can stop taking or reduce their medication.

The ‘Therapy withdrawal in REcovered Dilated cardiomyopathy – Heart Failure’ (TRED-HF[1]) feasibility study, led by Prof Sanjay Prasad and Dr Brian Halliday at the Royal Brompton Hospital & National Heart and Lung Institute (NHLI), Imperial College London was conducted to help address this patient need.

From 2016 to 2018, the TRED-HF trial recruited and followed up 51 people with recovered DCM. All were still on heart failure medications when they joined the study. They were randomly assigned to either:

Phased stopping or ‘withdrawal’ of their medication. The withdrawal was done gradually over 16 weeks. The trial team reduced the dose of one drug every 2 weeks until it was completely stopped, and then reduced the next drug/s in the same way.

Continuation of treatment. After 6 months, patients in the ‘continued treatment’ group also had their treatment withdrawn.

The study found that a 36% (95% CI 20.6, 57.8) rate of patient relapse following 6-months of treatment withdrawl and recommended that all participants continue taking medication until reliable predictors of relapse could be identified. Study results published here: https://pubmed.ncbi.nlm.nih.gov/30429050/

PERC researchers were involved in a qualitative sub-study (semi-structured interviews) with trial participants and staff undertaken in 2019. The team also involved a patient living with heart failure (& part of the Cardiovascular Lay Advisory Group at the Royal Brompton & Harefield NHS Foundation Trust) to help interpret and present the findings from the study. The result of this study are currently being written up for publication, with the initial findings presented at the 2021 Chronic Living conference.

[1]The TRED-HF trial was supported by the British Heart Foundation [grant number FS/15/29/31492]; the Alexander Jansons Foundation; Cardiovascular Research Centre and NIHR Biomedical Research Unit at Royal Brompton Hospital and Imperial College; Imperial College Biomedical Research Centre; the Wellcome Trust [grant number 107469/Z/15/Z]; and Rosetrees Trust.

PLY - People Like You

Members of the PERC team worked in collaboration with researchers at Goldsmiths University of London on the People Like You study about personalisation in healthcare.

Personalisation is changing many parts of contemporary life, from the way we shop and communicate to the kinds of public services we access. We are told that purchases, experiences, treatments, and interactions can all be customised to an optimum.

As a group of scientists, sociologists, anthropologists and artists, the People Like You team explored how personalisation actually works. What are optimum outcomes? Do personalising practices have unintended consequences?

The researchers argued that personalisation is not restricted to a single area of life and that personalised practices develop, interact and move between different sites and times. The project was split into four areas: personalised medicine and care; data science; digital cultures; interactive arts practices.

For more information see the People Like You project booklet.