Blinkers and the Unseen Information Gap in PMR Save

Sarah Mackie, MRCP, PhD

Oct 30, 2023 8:00 am

When you start someone on prednisone, please warn them about sleep, mood and hunger. Preferably in writing.

In my earlier blog, PMR: glad or bad tidings? I mentioned our PMR Voices 2021 public engagement project. This project brought home to me as a physician that although our expertise is essential, one unfortunate side-effect is that our very expertise can give us “blinkers” – blinkers, for those who don’t know this word, are the cups that may be placed either sides of a working horse’s eyes that help them focus on what is ahead. One result of our “blinkers” is that we may fail to see the extent of the information gap between us and our patients with newly-diagnosed PMR.

My story starts during the dark, cold winter of 2021. The UK was in COVID lockdown. Old, familiar ways of working, deeply embedded over decades of careful, incremental progress, were being rapidly disrupted by the urgent demands of this strange new time; telemedicine and videoconferencing were our new tools. In clinical trials, remote monitoring was now possible and even desirable where it had not previously been considered acceptable. In our practice, it seemed increasingly clear that the traditional “outpatient clinic” was no longer meeting the complex needs of our patients – if it ever really did. We wondered whether digital innovation might help us meet patients’ needs better. But do we understand what patients with PMR really need? Given that PMR is so common, it’s surprisingly rarely spoken about. The link with “the elderly” carries a social stigma, media coverage is scanty, and “celebrity patients” are notably absent. The solution was to simply directly ask patients with PMR what we could do better: and the new age of Zoom offered a chance to do just that.

The University of Leeds granted us a small amount of funding from a Wellcome Trust Translational Partnership Award for what was to become PMR Voices 2021, a user-centred clinical service improvement project. From my past experience of service improvement projects, I knew that “small steps to change” can add up to a big impact, and that it’s essential to involve users from the start.

We began as a small team (Margaret and Lorna, people with lived experience from the charities PMRGCAuk and PMR GCA Scotland; Amy and Hanif, Leeds patient and public involvement specialists, and me). We used a simple, anonymous web-based form to reach out to people living with PMR via forums and other online networks, asking them to tell us something from their lived experience which might help us generate ideas for improving clinical services for people with PMR. Alternatively, or in addition, people could join Zoom discussion groups to generate ideas-for-action to present to clinicians; an artist listened to some of the discussions and made sketches throughout.

The response was astonishing. We heard diverse and rich stories from people living with PMR from the UK, US, Canada and elsewhere. Each personal story was unique, but the discussion groups were able to identify common threads and identify suggestions for improvement. We did not use any special methodology but were guided by what the public contributors themselves wanted to say. Everyone was trying to solve the same problem – better outcomes for patients with PMR – but we found we had very different ways of looking at things.

As physicians we train for many years in basic science, clinical medicine, and rigorous specialist training; these years of accumulated experience are invaluable for practice as a rheumatologist. However, in the course of repetition over many years, familiar things can begin to pass unnoticed. Physicians are trained to function like workhorses: we plod through our daily appointment lists in a predictable, safe way, pulling our carts of administrative work behind us. Perhaps, in order to fulfil our assigned roles within the healthcare system, physicians must necessarily be “blinkered” to some extent. But these “blinkers of expertise” can blind us to certain things – things that may seem incredibly obvious to our patients. Perhaps it is only by simply listening to patients in a new context, outside the clinical setting, that we can begin to really see afresh those things to which we had long forgotten how to pay attention.

We noticed that phrases physicians love to use, such as reducing glucocorticoid toxicity, were never mentioned in our discussion groups. Instead, they said: Something could be done about steroid side-effects. It turned out that the public contributors did not mean “steroid-sparing drugs”, or “faster steroid tapers”. They meant something far simpler. At the first prescription of prednisone/prednisolone, they said, they couldn’t recall being warned about certain side-effects, which for some people turned out to be very severe. These stories of the time around the original diagnosis and steroid initiation, and what happened in the days and weeks after, were told again and again. Sometimes they were good stories. Often they were not.

Our final report listed several possible actions (first small steps to change) that had been suggested. Here, I want to talk about just one of those actions; others were taken forward in different ways.

We agreed to further explore the action “doing something about steroid side-effects”. But we were running short of time: there was a hard deadline for spending the last of the budget. The first stroke of luck was being joined by two University of Leeds medical students, Hussain Al-Hilali and Funmi Morgan. The second stroke of luck was a serendipitous opportunity to collaborate with the Cynefin Company, which provided in-kind support via short-term access to their web-based Sensemaker® software plus advice and support from Eleanor Snowden, who is highly experienced in working with teams in healthcare.

These two lucky events enabled us to greatly accelerate our public engagement project and get it done on time. Using the Sensemaker® software, public contributors can submit anonymous stories and reflections; rather than have researchers code and analyse the results, contributors themselves decide what their own stories mean. The software provides data visualisations that can show patterns in the responses that might not otherwise have been evident. This time, we collated anonymous stories from healthcare professionals (physicians, nurses) as well as people with lived experience, so we could compare the ways the two groups saw things. Hussain and Funmi listened carefully to the discussions and often pointed out what we “experts” had not noticed.

The first thing that jumped out to us was that the side-effect discussed most commonly by both the professional and public contributors was mood disturbance. The second thing that was to emerge from those patterns was a big gap in in sources of trustworthy information: in the stories from public contributors, trustworthy information from healthcare professionals or medical websites was often lacking. This “information gap” was filled either by information from other people (including online communities) or by nobody at all: a concerning minority of public contributors said that the only trustworthy information came from their own lived experience. By contrast, the professional contributors believed that their patients were receiving trustworthy information from medical professionals and medical websites, and did not realise the extent to which patients were accessing information from other people outside healthcare and online communities. A couple of the public contributors in focus groups admitted not telling their physician about looking for information online: it felt “like cheating on your doctor”, they said sheepishly.

Things did not seem to go so well when trustworthy information from healthcare professionals was lacking. This “information gap” was far deeper than we as physicians had realised and it seemed to be a particularly deep and troublesome gap for the subset of patients who were having the worst time. It seemed that although physicians have a vast store of information about steroid side-effects in their heads – this was clear from the nuanced and compassionate stories we heard from professionals – this information couldn’t always jump the gap from physician to patient, especially the patients who needed it most.

The earliest side-effects of prednisone – sleep, mood, hunger – could be experienced as extremely distressing, especially if patients did not recall being warned about them when they received their first prescription. I found it telling that these three side-effects are all to do with the brain and the mind. Comprehensive information sheets about steroid side-effects were of course available, including the package insert as well as a booklet from the charity Versus Arthritis, but most public contributors said they found such detailed materials too overwhelming to read at the point of diagnosis.

Public contributors suggested that it would be simplest and best to hand over a short information sheet about these three key early side-effects together with that very first prescription for steroid therapy. Lorna and Margaret worked closely with Hussain and Funmi to make sure that the leaflet was as simple as possible, while containing some key points a patient might need to know during those first few days. Prof Maria Lonsdale and Dr Matthew Baxter, our collaborators from the University of Leeds with expertise in information design, then transformed Hussain and Funmi’s design into something accessible and easy to read.

We’d originally been inspired by the possibilities that the “world of digital” could offer us, and there is still a long way to travel along this road, but it took many hours of listening to lived experiences to identify one small thing that might make a big difference in everyday care. Our final end-product was a simple piece of paper: probably one of the lowest-tech interventions to come out of a “translational” grant. I am proud of this. Low-tech interventions can serve as a way of testing the water: if we use this simple tool very early in the care pathway, can it shift the nature of conversations throughout the whole patient journey, and what does it tell us about what needs to happen next? Time will tell.

For me, PMR Voices 2021 has helped me feel more confident about validating patients’ experiences of steroid side-effects. Pharmacological management of psychiatric disorders is well outside my scope of practice, but I do now have a deeper appreciation of the degree to which physical and mental health are intertwined. This is particularly the case for patients taking high-dose or long-term glucocorticoids and I now much more frequently ask my patients about mood, sleep and their daily lives. This allows us to make better shared decisions together making sure that quality of life is discussed. I recognise that as a physician I still inevitably have “blinkers” – after many years of training I cannot fully escape them - and that is why patients, carers and relevant members of the multidisciplinary team need to be involved in decision-making.

Our departmental Quality Forum at Leeds has now formally approved Hussain and Funmi’s simple information sheet for use across our rheumatology department. We are incredibly grateful to everyone who contributed their time and effort to make this happen. We hope that physicians elsewhere might think about what information their patients receive along with their first prednisone/prednisolone prescription. If you might find our leaflet useful, you are very welcome to adapt it for your own use, but if you do, please let me know so I can feed back to those who played a part in creating it. I think they would be pleased to know their suggestions have made a difference to clinical practice.

Acknowledgements

PMR Voices 2021 was co-led by two people with lived experience – Lorna Neill of PMR GCA Scotland and Margaret Grover of PMRGCAuk, and facilitated by patient and public involvement professionals, Amy Rebane and Hanif Ismail. The steroid side-effects leaflet work would not have been possible without the attentive listening skills of two Leeds medical students, Hussain Al-Hilali and Funmi Morgan, co-supervision provided by Dr George Crowther, liaison psychiatrist. Jean Scopes, Rheumatology Specialist Nurse, provided key contextual insights drawing on her professional knowledge of supporting patients with rheumatic disease. We thank Eleanor Snowden of the Cynefin Centre for her support with the Sensemaker® system. We thank Maria Lonsdale and Matthew Baxter for producing our final leaflet. Lastly we would like to thank all the people with lived experience who contributed their ideas to this project, whether anonymously or via Zoom discussion groups. We are incredibly grateful to them all for their contributions. Lastly thanks to Eileen Harrison for giving me the idea about the blinkers.

Download: What to expect when starting steroids

References

Funmi Morgan, Hussain Al-Hilali, Margaret Grover, Lorna Neill, Eleanor Snowden, Jean Scopes, George Crowther, Amy Rebane, Hanif Ismail, Sarah L Mackie, E013 Co-production of a quality improvement project to address glucocorticoid toxicity, Rheumatology, Volume 62, Issue Supplement_2, April 2023, kead104.262, https://doi.org/10.1093/rheumatology/kead104.262