Does the Mesothelioma Audit actually benefit Mesothelioma sufferers? Interview with Lorraine Creech.
23 Aug 2018
The Mesothelioma Audit for the period 2014-2016 was released in June this year provided by the Royal College of Physicians and was funded by Mesothelioma UK.
The Audit provided data on over 7000 patients diagnosed with mesothelioma in England and Wales during this period including for the first time those diagnosed with peritoneal mesothelioma.
We interviewed Lorraine Creech who explains what we learned from the survey, why it's of real value to patients both now and in the future and what needs to improve going forwards.
1. What do you think the main points we learned from the audit?
I think it was good that we were able to see a national picture for England and Wales. It's important to know that the number diagnosed was 7192 from 2014-16
This report is also the first one to have peritoneal mesothelioma data included. 260 patients were recorded in England.
Pathological diagnosis was obtained in 88% of pleural mesothelioma cases and in 64% of cases had subtypes recorded but this rate varied across Cancer Networks. We need more sub-typing to enable patients to the receive most appropriate treatment and access the appropriate trials.
It was pleasing to see that 51% of patients with pleural mesothelioma received some form of anti-cancer treatment and 40% of patients had chemotherapy which was an increase compared with previous audits. However, a Network variation remains.
The fact that 81% of patients were discussed at an MDT is good. The access to a Cancer Nurse Specialist was good at 93% in Wales, but it was only 54% in England and there was regional variation in that. We need to look at this and why it is so different.
2. Why do you think only 51% of patients received anti-cancer treatment
It is difficult to answer this specifically. There was a big variation by different networks. Knowing whether we're getting all the data is important. It is something to be worked on.
It's important to know whether the increasing number of diagnostic procedures that we have now would help with this. Improvements in diagnosis means that patients are more likely to go on to active treatment. It could also be related to the fact that not all patients have access to a specialist multidisciplinary team and discussion at a specialist multidisciplinary team meeting.
Some patients are also for palliative care / best supportive care from diagnosis if their performance status and symptom burden is high.
3. Does the age distribution of the survey fit with that your currently seeing I.e vast majority in age 65-85
Yes, although we are also seeing some younger patients. It will always largely be within this age bracket because of the latency period of the disease.
4. Why do you think none of the recommendations and audit standards set in the last audit have been achieved?
Because there is still a lot of work to do. Mesothelioma is still classed as a rare disease and we are also looking back to figures for 2014 to 2016 period in this latest report. I would hope that if it was data from today, 2018 some of the audit recommendations would have improved and I would hope that future audits will reflect this.
Access to clinical trials has improved. There has been a plethora of clinical trials which will help as will the better establishment of expert teams, including pleural teams and the development of specialist MDT meetings.
5. Why do you think 36% of cases still do not have the histological subtype recorded and how do you think this can be improved?
We now have better access to improved diagnostic techniques and to specialist pleural respiratory teams which in many cases were not set up during the audit period. In centers where sub-typing is low, this needs to be investigated and discussion in MDT meetings with a view to improving the diagnosis of specific sub types. The British Thoracic Society Mesothelioma Guidelines published earlier this year recommended pathologists report subtypes in all cases. The audit report advises that networks should review their procedures if more than 10% of cases were reported as unspecified.
6. Why do you think sub-typing was so low in Greater Manchester, Lancashire and South Cumbria area (37.1%)
It surprised me and I don't know why it is as low as it is. I will be looking into this as it was across the board really poor in this area. It was better in all of the other Cancer Networks. I don't know if it is the recording of the data. The specialist MDT meeting at Wythenshawe Hospital was set up in 2015, this was halfway through the audit period so I would hope it has been improved since then and will be better in the next audit.
7. Why do you think in Greater Manchester, Lancashire and South Cumbria 70.7% with performance status 0 or 1 get chemotherapy and yet in most other areas it's a lot lower.
Historically, it has been the case that patients accessing chemotherapy was higher in this area. I think it is because of the excellent thoracic oncology service at Wythenshawe Hospital. There is something about having specialist treatment in a center which helps.
8. There's no established 2nd line treatment - do you think we are moving any closer to getting further standard treatments for mesothelioma?
In short, I think we are. I cannot be more specific about it and it's important that fit patients are referred to specialist centers to consider further systemic treatment and clinical trials. Often clinical trials can involve travel. Patients can be supported in this travel by grants from either Mesothelioma UK or sometimes within the trials themselves. For example, the Mars 2 trial has a travel component included.
9. Why do you think the 1 year survival is still only 38% and 3 years 7%
Because we have no proven treatments other than first line chemotherapy at present. This is why access and entry to clinical trials is so important. We need to move towards managing mesothelioma as a chronic disease. We're not there yet with treatment and it comes back to access to first-line treatment and first, second-line and maintenance trials. My view is that the survival statistics will be better in the next audit.
10. How important do you think the MDT is? In 2014-16, 81% were discussed- would you like to see this at 100%?
The MDT is extremely important and I would like to see 100% of patients discussed.
In my opinion as with previous audits, the data demonstrated a clear need for the setting up of Regional MPM MDT meetings in order to drive forward improved diagnosis, treatment, care and clinical trials for patients with MPM.
11. Why do you think only 54% of patients in England were seen by a cancer nurse specialist and how do you think this could be improved.
Only 54% of patients were seen in England, but it was much higher, 93% in Wales.
Hospitals do have Lung Cancer Nurses so I'm not sure why they're not seen. There is also a regional variation. For example in the Greater Manchester, Lancashire and South Cumbria which includes Mid Cheshire, the Mid Cheshire the cancer nurse specialist saw over 87.8% of patients. This variation needs to be improved to meet the recommendation of at least 90% of patients being seen by a CNs and at least 80% having a nurse present at diagnosis.
Mesothelioma UK is helping with this by having a greater number of nurses, which I expect will have an impact on this but not only by them being in the centers but by them also providing outreach to other specialist lung nurses, including liaison and education. Mesothelioma UK is hoping to adopt five nurses in the next few months and it has a vision to have a nurse in every Strategic Clinical Network as soon as this is feasible which would help.
Mesothelioma UK is also funding a peritoneal nurse specialist at Basingstoke, where there is a specialist peritoneal multidisciplinary team and it hosts the National Peritoneal Mesothelioma MDT meeting.
It can be improved further by continuing to work with the National Lung Cancer Nurses Forum about the importance of assessing patients and providing support for those with mesothelioma.
12. What changes would you hope to see in the next audit and what do you think should be the main focus for the next 5 years?
A move towards all recommendations being met and definitely improved upon by the time of the next audit. In particular I hope to see the key recommendations of the 2018 audit being met.
There must be a drive to improve care and treatment to improve these statistics.
There must be access to standard treatment with a focus on the importance of the clinical trials and drive to move this forward.
At some Trusts patients are encouraged and given good access to clinical trials. This is not necessarily always the case nationally and there is inequity of access to clinical trials and second opinions. If trials are not available locally people may choose to travel and need to be referred to main centers.
I hope to see people being better informed and provided with resources for discussions and signposted to Mesothelioma UK to find out what's available for patients, carers and professionals.
All patients with mesothelioma should be given access to specialist teams.
13. How do you think Mesothelioma UK can help achieve that?
By being a one-stop resource centre.
By having resources in the form of the helpline, information leaflets, website, social media and mostly by the increasing the number of Mesothelioma UK clinical nurse specialists nationally as integral members of the multidisciplinary team to improve quality care and access to support for mesothelioma sufferers.
Lorraine Creech is a CNS Team Leader with Mesothelioma UK covering the North of England, Scotland and Wales. Mesothelioma UK is a national specialist charity dedicated to providing specialist information, support and education and improving care and treatment for all UK patients and carers affected by mesothelioma.