Lupus patient experiences
Lupus patients joined a research team at the University of Cambridge to study the experiences of patients with lupus and related diseases. Lupus is a chronic auto-immune condition which can damage many parts of the body, affecting people’s lives deeply, yet can take years to diagnose.
The research, called the LISTEN study, is focused on the impact of patient-physician interactions on patient well-being, behaviour and disease acceptance during and after diagnosis. The team used mixed methods including surveys, qualitative interviews with patients and healthcare providers, and ethnographic analyses of LUPUS UK forum posts.
Mo, patient representative, and Melanie Sloan, lead researcher, from the Primary Care Unit in Cambridge, explained to Miranda Van Emmenis how the team worked to learn about lupus patient experiences.
When Mel first asked me if I would participate in the research group, I was at an all-time low. Three years in from my diagnosis of Lupus, I had been fighting to make my GP understand I wasn’t lying about it. He left me feeling like a non-human, degraded and disposable. I lost my job due to my GP’s insistence that I was lying about my diagnosis.
Mel’s invitation to participate in the research team was like a hand reaching out to pull me from the quicksand of worthlessness – of course I accepted.
I was so proud to see my name ‘in print’, first as an expert patient, then as a co-author. I’m very touched to think the group’s work is having the intended effect, of changing things for the better for lupus patients in their medical interactions.
I’ve discovered niche skills I didn’t know I had – condensing text for maximum impact and optimal word count, eagle-eyed sub-editing – and it has helped me immensely in my new role with the civil service working in policy!”
I feel so honoured to be part of the LISTEN team and so privileged to know the people in the team, and so full of admiration for Mel. I now have something to do for me, me-time, working with people who have huge empathy for my circumstances, giving advice and emotional support so I still have energy to participate and contribute. I am eagerly awaiting the next round of papers and seeing what I can contribute.
One major challenge is when circumstances prevent me from contributing to the research. I’m grateful that Mel always says ‘only if you are able’ and makes it quite clear continuous contribution isn’t expected.
I’ve never been allowed to feel out of my depth, we do what we can do and accept each other’s skills and fallibilities.”
There are those on the team who are experienced researchers and/or writers, but I’ve never been made to feel anything other than my contribution is as valid as theirs.
Mo’s top tips for members of the public interested in research involvement
I would simply encourage everyone to get involved if they have the will. Everyone has something to offer – whether that be a random thought that sparks creative progress or a unique experience as a patient or carer.
Don’t be daunted by the skills and intelligence of other people! I was intimidated when I first joined the LISTEN study but I found the confidence to share my thoughts and ideas, many of which ended up in published papers.
The main philosophy is that the research is carried out fully involving patients rather than using them as ‘subjects’. The initial plan was to form a group of expert patients where we could discuss research priorities and they could provide deeper insight into the patient perspective.
I wanted representatives who could add their expert perspectives of having the disease, yet also be objective.
To achieve the right selection and try and build a team who would work well together, I spent several months on the LUPUS UK forum and then I invited five of the most expert, objective and compassionate forum members to join the PPI team. They all accepted and we formed an email group where we discussed research priorities, conducted the first forum data analysis and started work on several lupus studies.
It quickly became a mixture of a highly effective research team combined with a supportive environment for discussing both our own medical issues (I have lupus myself) and interactions with physicians, often leading to discussions about more general issues faced by lupus and related diseases.
Our biggest challenge will always be that we all have lupus or a related disease, and it is unpredictable and hugely life-changing. However, this is also our biggest strength – we have a deeper understanding of our study participants and we are bonded as a team by our shared disease.
One of the patient reps very quickly named us the ‘wolf pack’, from lupus, stemming from the Latin for wolf. Individually we are quite often very sick and weakened by the disease but together we are strong.”
There are many times when one of us is having a disease flare and unable to contribute as we would like to, either the discussions or the research, but as Mike Bosley, one of the patients in our team, (or actually Rudyard Kipling) always says ‘The strength of the wolf is the pack and the strength of the pack is the wolf’.
We support each other through some major health challenges, whilst also keeping each other motivated to focus on the fact this work on lupus patient experiences is going to improve the lives of other patients.
Sometimes there are differences in opinion between the patient reps, the charities and the physicians, and as lead researcher, it can occasionally be a little hard to balance. However these different perspectives have always led to greater insight and better research in the long run.
For example, our recently submitted paper, on the impact of the shielding guidance on patients during COVID-19, had some politically contentious content, especially on comparisons between England and the devolved nations.
The team had divergent views on what to include and how strongly to phrase, and my first draft omitted to fully acknowledge the differences in devolved nations’ participant views. With two patient reps in Wales and one in Scotland, I was quickly told I was being (inadvertently) England-centric, which led to an improved re-draft. This may not have been picked up on had the team being wholly composed of Cambridge-based academics.
Successes with the PPI group
Together, we have had five papers published as a team in one year.
I was very proud of the wolf pack when we got our first paper published, they’d all contributed so much. They all met journal requirements as official co-authors. So many patients told us that we had truly represented their – often unheard – voices and made them feel there was hope.”
Two of our papers, ‘Medically explained symptoms’ and ‘Is it me?’ were on the journals’ ‘top 5 most read’ charts, with rheumatologists saying the work had opened their eyes to the patient perspectives.
Whilst we also have a fantastic wider team of lupus professors, rheumatologists, psychologists, and great support from LUPUS UK, this quantity and quality of work would never have been achievable without the, effort, time and input from the patient reps. It also makes us a very balanced team, especially when our aim is to ‘bridge the gap’ between patients and physicians, and some of our work can be contentious.
The impact of the LISTEN study on the PPI group
So many people with these diseases can’t work and can feel like their life has stopped. Yet as every member of this patient group has shown, they can contribute so positively and still make such a difference, even with very severe disease at times.
The impact of PPI on the LISTEN study
Our PPI group has made a huge difference to the research. The regular email discussions often involve brainstorming and the most insightful analyses invariably stems from these discussions. They all have individual skills and past experiences which are extremely helpful. For example, one is an ex-mental health clinician and has a huge amount of knowledge in this area, and another is an English graduate and they all improve the papers (and correct my grammar!) It is like having 5 extra professors on the study!
It’s the true understanding they all have of living with the disease and in-depth understanding of the participants in the studies that can never be matched even by the very best physicians or psychologists.”
Everything we discuss, analyse and interpret from our study participants has invariably been experienced by one, often all, of the patient reps – the pathological fatigue, the long journey in the ‘diagnostic wilderness’, the dismissal of the more invisible symptoms by society and physicians, and the positive empowering relationships with physicians. Working with this amazing team means it never feels like work or tasks to get through, it feels like a shared passion, with fascinating conversations and support at every step of the way.
Melanie’s top tip for researchers planning PPI
The key to our success as a team is that primarily we are all incredibly motivated to represent and advocate for all patients with these diseases. Time spent at the initial selection stage to find the right people for the research is important and I would advise other researchers to do the same.
Thanks to the NIHR School of Primary Care Research for supporting the writing of this case study.
Written by Miranda Van Emmenis, research assistant, and edited by Lucy Lloyd, Communications Manager.
Outputs from the LISTEN study
Our PPI reps are co-authors and contributors on the following publications:
- Is it me? The impact of patient-physician interactions on lupus patients’ psychological well-being, cognition and-health-care seeking behaviour. (2020) Paper. Lay summary.
- Medically explained symptoms: a mixed method study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases (2020). Paper. Lay summary.
- ‘But you don’t look sick’: a qualitative analysis of the LUPUS UK forum. (2020) Paper. Lay summary.
- The impact of the COVID-19 pandemic on the medical care and healthcare-behaviour of patients with lupus and other systemic autoimmune diseases: A mixed methods longitudinal study (2020). Paper. Lay summary.
- The impact of Covid 19 and the U.K.’s shielding guidance on patients with lupus and related systemic autoimmune rheumatic diseases (2021). Paper. Lay summary.
Research team: Melanie Sloan, James Brimicombe and Stephen Sutton (Behavioural Science Group at the University of Cambridge Primary Care Unit), Caroline Gordon (University of Birmingham), David D’Cruz (Guys Lupus Unit), Elliott Lever (Northwick Park Hospital), Chris Wincup (University College London), Felix Naughton (University of East Anglia), Paul Howard and Chanpreet Walia (LUPUS UK), Mo, Rupert Harwood, Coco Barrere, Mike Bosley and Lynn Holloway (PPI contributors)
For more information about the LISTEN study please contact Melanie Sloan at firstname.lastname@example.org