I had the privilege and the pleasure earlier this week of chairing a patient group meeting. You might think I have done a lot of that so why should it be so special this time. It is true, I have chaired and been part of patient groups quite frequently over more than 20 years but this one was special for a number of reasons.
First, it was of course a Zoom meeting – a screen full of unfamiliar faces, intriguing backgrounds, challenges with mute buttons, and some variable framing.
Secondly all those attending had been treated for a retroperitoneal sarcoma (RPS). This is where a sarcoma occurs inside the peritoneum. These tumours are rare, accounting for less than 300 cases a year in the UK. They can become extremely large, rarely causing pain until they put pressure on organs, thus often being diagnosed late. The main treatment is surgery which can be extensive, patients can lose organs compromised by the tumour. During the last ten years the surgeons around the world who specialise in this demanding surgery have come together as an international working group (TARPSWG), shared data, and have agreed that radical approaches are needed to deliver the best outcomes for patients.
I have only ever previously met one or two at a time of RPS patients. At this meeting there were 15, some initially treated more than ten years ago, a couple only treated last year and still getting to grips with their recovery.
And third, most of these patients had been treated by one surgeon – a member of the specialist surgical team based at the QEII Hospital in Birmingham. He was in the meeting too, along with members of his team and a research statistician.
This team are leading the development of a clinical study about follow-up. The TARPSWG group has recognised that there are no standards and it is impossible to identify the most effective approach to follow-up currently used around the world. For some patients it is probably unnecessarily intense, others may benefit from greater intensity – no-one is sure. Some patients have higher grade tumours (more aggressive), others are low-grade, and there are also variations in tumour histology. Hence the work on the study.
The purpose of the meeting was to explain the background to the study, what is currently being planned, to get patient responses to some specific questions the study team have, and to see what issues the patient group raise and want to discuss.
Even though all of them were RPS patients the individual experiences were extremely varied. One person had had a primary tumour which weighed 35lbs (15.8kg), another described theirs as “large as a mango”. Several had serious organ loss – kidneys, spleen and other organs. A few had had recurrences and were in continuing treatment or active surveillance. It was a genuine cross section of lived patient experience. A couple shared their screen with a partner, both of whom also contributed valuable comments and ideas.
It was a lively meeting and the input from those assembled on screen was truly remarkable. I assured them at the outset that no question was ‘silly’, just give out whatever came to mind. Inevitably there were very individual issues expressed and we had to ensure that some of these were side-lined to become a personal call from the surgeon. But the readiness to understand concepts which are not in general public debate (eg randomisation, timing of questionnaires) and to constructively consider what intensive and less intensive follow-up actually meant for patients, was tremendous. I was especially encouraged by the willingness to grasp what ‘quality of life’ meant and how researchers go about assessing it.
I have always said, never under-estimate what an involved group of patients can bring to a study, and it was as true here as it ever was. The range of responses and issues raised will provide an invaluable input to the study team as they develop the idea further.
A truly special afternoon and I have to thank all those who took part for the privilege of meeting them and also the Birmingham team for the invitation to take part.