Radiotherapy doesn't work for everyone?

This is something I have specifically investigated due to someone asking. For this I am using the survey data collected for the presentation and just looking at Ledderhose patients that have had radiotherapy. The question really was how many patients, or what percentage are unhappy with radiotherapy.

To start with I used the same rating system as I did for the presentation, 1-3 unhappy, 4-7 neutral and 8+ happy.

Number	Description
104	Ledderhose patients having had Radiotherapy
10	Patients Rating RT 3 or less
29	Patients Rating RT 7 or less
55	Patients Rating RT 8 or more
0	Avg Pain Difference in 1* RT rating patients
-2	Avg Pain Difference in 2* RT rating patients
-0.8	Avg Pain Difference in 3* RT rating patients
5.3	Avg Pain 7 or less rating pre RT
4	Avg Pain 7 or less rating Post RT
30	Current Pain is worst pain
-2.26	Average Pain change after RT (all LD)
58	% of Low / Medium patients Male

Of the 104 patients in this group 55, or 62.5% can be included in the “happy” group and I am going to assume that all of these patients would say they thought radiotherapy was good and worthwhile. So then looking down into the remaining 37.% (those that rated RT 7 or less out of 10). Interestingly one questions that was asked was pain level at its worst and pain level now, admittedly I cannot say what order patients have had treatment in but most patients had only had radiotherapy and of those rating it 1* there was, on average, no change in pain level. For those rating it 2 stars an improvement of 2 levels (out of 10) improvement was seen between their worst level of pain and now. In those rating it 3 stars a 0.8 improvement was seen. On average in all patients that rated radiotherapy as 7 stars or less the average worst level of pain is 5.3 and the current level is 4 and only 30 patients out of the 104 would rate their current pain as their worst level pain. Of course it would be ideal to know how long ago these patients had radiotherapy as it may have been too soon to have noticed an improvement.

In all patients the average pain level between their worst and current is a decrease of 2.26 which shows a good improvement, clearly with further analysis it could be determined if this was mostly people jumping from 10 to 2 and 2 to 1 or staying the same or a lot of patients going from 10-8, 4-2 etc. A quick look at the data implies that it is likely the former scenario with there being a wide range of patient experiences, with some like myself jumping from a high pain level down to a very low level and some already being at a low level and staying there. Seeing as the main aim of radiotherapy is to stop progression the fact that there is a good pain decrease on average is a very positive result.

Interestingly when looking at the patients that were less satisfied (rating of 7 or less) I observed nearly 60% of them were male. Given the survey for Ledderhose as a whole is biased towards women, this is an interesting shift and either shows that there men were a) expecting more b) harder to impress or c) do not have such a good reaction to radiotherapy.

The other area that I felt it was worth breaking down was the country that these patients are from. I broke them down to UK, USA, Germany and Other. Note that this is country of residence and many patients from the UK for example travel to see Prof S in Germany. The total number of patients in Germany, UK and USA that have had radiotherapy was comparable and interestingly it seems that those from the UK are mostly likely to react well with nearly 90% of these patients rating radiotherapy as 8 or more out of 10, this fell to 69% in Germany, 55% in the USA and 42% in other locations. This does suggest that Germany and the UK, the locations where this has been available for a little bit longer might be the places to go from radiotherapy. Of course it could also be that us Brits are more complacent and have more easily given a higher rating than those in other countries, the problem with a patient orientated survey is that it is subjective. It would be really interesting to see how different patients from different countries rate radiotherapy with Prof S for example where he has treated a wide variety of patients from around the globe to see this difference in rating is clinically observed in patient outcome or it is an attitude difference.

Overall the results for radiotherapy as a treatment option for Ledderhose are very positive and it was by far and away the best rated treatment option by Ledderhose patients in the survey, nothing else really came that close. However patients should know, as is well advertised, that radiotherapy is not a cure, it is not 100% going to work. In fact if you survey patients nearly 40% would rate it as less than 7 out of 10, some patients go from being in extreme pain to no pain at all (I would have rated myself a 9 out of 10 and now I am probably a 0 or 1) whilst others see no improvement or the condition can continue to progress or get worse. Of those that go get worse we cannot say whether this is because of radiotherapy or it was just the natural course of the condition and the radiotherapy was not successful. Yes the condition could get worse but it could get worse by itself, it probably will get worse if you have surgery or one of the many other treatment options.

Note that a smaller survey indicates that there have been no cases of cancer in post radiotherapy patients, results to be published soon.

Whether you like radiotherapy or not there is little doubt that it is a valid treatment option for Ledderhose and should probably be considered as the best treatment option for Ledderhose. Over time it will be interesting to see how the above more in depth analysis compares to the same set of results for other treatment options, though realistically only surgery had enough responses to justify being looked in to. Perhaps I should add that to my to do list as well.

I welcome feedback from patients and there are any other questions that anyone has about the results of the survey then please ask, I am happy to look more in depth into the data, there is just so much there that it really requires an initially question to be addressed. Thank you for those that asked this question and asked me to address it.