Van: Health of minority ethnic communities in the UK namens Ash Paul Verzonden: zo 14-3-2010 04:34 Aan: MINORITY-ETHNIC-HEALTH@JISCMAIL.AC.UK Onderwerp: Re: Prostate screening, PSA test and the BME community Dear Rose, Many thanks for your reply and for your good wishes. I would like to add that there are quite a number of BME consultants in public health medicine in the UK, including academics like the illustrious Prof Raj Bhopal, Bruce and John Usher Professor of Public Health at Edinburgh University and a member of this Group, Prof Aneez Esmail who is Prof of Primary Care at Manchester University and Prof Aziz Sheikh at Edinburgh University. You have written that you would welcome a good debate on this subject, which is the reason why I'm replying back to your email. The PROCESS cohort study in the UK established that black men in the United Kingdom have substantially greater risk of developing prostate cancer compared with white men, although this risk is lower than that of black men in the United States: http://www.sasi.group.shef.ac.uk/publications/2007/benshlomo_et_al_author_version.pdf However, the UK-based PROCESS cohort study comparing black men with white men found no evidence of differences in disease characteristics at the time of prostate cancer diagnosis, nor of under-investigation or under-treatment in black men: http://www.nature.com/bjc/journal/v102/n2/full/6605461a.html There should be no question about the debate of the PSA test running on and on. As I mentioned in my previous email, the inventor of the PSA test Prof Richard Ablin has himself pointed out its severe limitations in the NY Times opinion-editorial recently. In addition, the two large 2009 studies 1. Mortality Results from a Randomized Prostate-Cancer Screening Trial (The New England Journal of Medicine) and 2. Screening and Prostate-Cancer Mortality in a Randomized European Study (The New England Journal of Medicine) both show that the PSA blood test saves few lives and leads to risky and unnecessary treatments for large numbers of men. You have written in your email that you hope that some day a new test will be found that can't be challenged. In my opinion, that is wishful thinking. What you meant to say, if I'm not mistaken, is that you are hoping that soon some test for detecting prostate cancer will be found that has a higher sensitivity and specificity than PSA. A test with 100% specificity and 100% sensitivity (when the test can't be challenged) for prostate cancer is very unlikely ever to be discovered. Assuming that a replacment test for prostate cancer with higher sensitivity and specificity than PSA is discovered in the future, as a NHS commissioner, I would still oppose a universal prostate cancer screening programme until all the following criteria of Wilson-Jungner were satisfied, especially points 9 and 10: The Wilson-Jungner criteria for appraising the validity of a screening programme 1. 2. 3. 4. 5. 6. 7. 8. The condition being screened for should be an important health problem The natural history of the condition should be well understood There should be a detectable early stage Treatment at an early stage should be of more benefit than at a later stage A suitable test should be devised for the early stage The test should be acceptable Intervals for repeating the test should be determined Adequate health service provision should be made for the extra clinical workload resulting from screening 9. The risks, both physical and psychological, should be less than the benefits 10. The costs should be balanced against the benefits I agree with you that men should be aware of the pros and cons of the test. However, now that we have figures from the the two 2009 trans-Atlantic studies which I have mentioned before, those pros and cons should be expressed in simple to understand figures. Commenting on the two studies, Dr. Peter B. Bach, a physician and epidemiologist at Memorial Sloan-Kettering Cancer Center, says one way to think of the data is to suppose that a patient has a PSA test in 2009. It leads to a biopsy that reveals he has prostate cancer, and he is treated for it. There is a one in 50 chance that, in 2019 or later, he will be spared death from a cancer that would otherwise have killed him. And there is a 49 in 50 chance that he will have been treated unnecessarily for a cancer that was never a threat to his life. I keep hearing all sorts of people commenting on survival rates of prostate cancer in the UK being much worse as compared to those in the USA. US political leaders like Rudy Giuliani have made similar political statements smearing the NHS in 'The Times' on 1st November 2007. The absolute truth of the matter is that the survival difference quoted in the US figures is a mixture of length time bias and lead time bias, and has nothing to do with the dangers of socialised medicine ie the NHS (Ref: Screening; evidence and practice by Sir Muir Gray and Angela Raffle, 2007, OUP; Page 208). In the USA, the home of the free to have a PSA (Prostate Specific Antigen) Test, the extremely high rate in the USA (125 per 100,000) is 2.5 times the reported rate in the UK (52 per 100,000). This is likely to be due to the high rates of PSA testing in the USA. It is estimated that 15-30% of men over 50 in the UK have histological evidence of cancer in the prostate rising to 60-70% by the age of 80, but only 1 in 25 men (4%) will die from this disease. In other words, men are more likely to die with prostate cancer than from it (http://info.cancerresearchuk.org/cancerstats/types/prostate/incidence/) Following on from your statement that the pros and cons of the test should be explained, with which I concur, I would emphasise that this needs to be explained with figures in very simple language that most patients can understand ie Imagine in your town 20 people die every year from prostate cancer, out of 40 diagnosed. Survival is 50%. Then you start screening, and find you are diagnosing 80 every year, but still 20 die every year. The total number of deaths remain unchanged but survival has now shot up to 75%. The Medical Journal of Australia in a November 2007 Editorial on 'The Media and Prostate Cancer Screening', emphasises that the provision of incorrect information or incorrect data interpretation does not serve anyone well (http://www.mja.com.au/public/issues/187_09_051107/ste108241_fm.pdf). For me, as a consultant in public health medicine, anecdotal evidence is the lowest form of evidence in the hierarchy of evidence. I accept that you as a clinician, have a duty of care to every individual patient, but as an NHS Commissioner, tasked with spending a fixed pot of money, given to us by the UK tax-payers to spend on buying maximum health gain/health outcomes for our populations, you need to remember that I (or indeed any healthcare commissioner anywhere in the world) do not commission for an individual but for populations. In addition, I cannot spend the same pound twice, and therefore every pound spent inappropriately, bringing less health gain, is an 'opportunity cost' for an equally, if not more deserving service that will lose out. Sticking with the example of the BME community and spending on cancer services, I would much rather spend a lot more cancer money on health promotion and increasing coverage for breast and cervical cancer screening for BME women (because that would bring me much greater health outcomes), instead of spending the NHS's scarce resources on the marginally effective PSA test for prostate cancer. I would welcome a debate amongst other members of this group, to what some members might very well regard as a controversial posting. Kind regards and best wishes, Ash Dr Ash Paul Medical Director NHS Bedfordshire 21 Kimbolton Road Bedford MK40 2AW Tel no: 01234795705 Email: ash.paul@bedfordshire.nhs.uk From: Rose Thompson <rose.thompson11@NTLWORLD.COM> To: MINORITY-ETHNIC-HEALTH@JISCMAIL.AC.UK Sent: Sat, 13 March, 2010 2:53:28 Subject: Re: 2010 Prostate cancer Annual Evidence Update Dear Ash Delighted to hear that you are a consultant in public health medicine and a member of the BME community. I hope more BME community members will take up a career in Public health. I appreciate the fact that you have taken the time to respond to my previous message and I am aware of how the test can be over used in the USA where there is a different health system, predominantly delivered via Private companies. There are times that I wish there was currently a definitive test that could be used to detect prostate cancer to end the ongoing debate about the PSA test. I agree the PSA test is not definitive (as previously stated in my email) because it is well documented that about 2 out of every 3 of men with a raised PSA level will not have prostate cancer. I also mentioned the fact that men should be aware of the pros and cons of the test. I just reviewed my comments as I am always up for a good debate and open to constructive comments. I understand how you could have interpreted the case study but I was not advocating PSA testing as a screening test, merely following the guidelines for suspected prostate cancer and emphasising the importance of an awareness of the role of ethnicity in prostate cancer. Digital Rectal Examination or DRE via the back passage is also recommended alongside the blood test. I am a qualified radiotherapy radiographer and have treated hundreds of men with prostate cancer. Men with advanced prostate cancer are more likely to have abnormally high PSA levels in my experience, but even then it isn't entirely reliable. When I said the patient was advanced I should have qualified the stage, his PSA level was abnormally high as expected. The debate about the PSA test will run and run until a more reliable test is available and I for one will also be pleased when something better replaces it. The debate should really be about awareness raising, early detection and saving lives. 10,000 deaths per year is not a figure to be dismissed. That is the number of men whose deaths are related to prostate cancer. I also in my work have to look beyond the numbers. I see bereaved families and what happens between diagnosis and death. The National Cancer Action Team are focusing on Survivorship because this is what is important to members of the public affected by cancer. Anecdotal evidence should not be dismissed, as hard statistical evidence does not always capture the whole story. For example if you look at current stats for breast cancer, BME communities have lower incidence rates. What isn't captured is the higher rates of a specific type of cancer in younger premenopausal Black women. UK Black community members were concerned about the increase in breast cancer in this age group prior to the evidence. Missing information (including anecdotal) is important and without accurate data on ethnicity, results are questionable despite extrapolation. The 2009 NCIN ethnicity report was one of the first serious attempts since the late 90's at bringing together all the ethnicity data currently registered in the UK , yet report authors stated 40% of males with prostate cancer were recorded as unknown ethnicity which makes interpretation of the stats difficult. http://library.ncin.org.uk/docs/090625-NCIN-Incidence_and_Survival_by_Ethnic_GroupReport.pdf. Finally I would review the last statement I would strongly oppose any prostate cancer screening programme . (I know you meant PSA testing) I do hope that statement will be retracted when the right test is found. The PSA test is not a screening programme as there isn't currently one, but we all hope that some new test can be found that can't be challenged. When that happens there a prostate cancer screening programme for men can be developed. The one thing we do know from the other screening programmes is that they are saving lives. I do hope that you will take some of the above into account in your Public Health role. Best wishes Rose PS - I am aware that others may want to join in the debate, but would prefer if the group looks at the data on the links provided via my last 2 messages. From: Ash Paul [mailto:paulak22@yahoo.com] Sent: 12 March 2010 21:47 To: Rose Thompson; MINORITY-ETHNIC-HEALTH@JISCMAIL.AC.UK Subject: Re: 2010 Prostate cancer Annual Evidence Update Dear Rose, You might be interested to know that the inventor of the PSA test for prostate cancer screening Prof Richard Ablin, in a very recent op-ed in the NY Times, today regrets his invention and rues how it has led to a multi-billion dollar profit driven public health disaster in the USA . He writes ‘I never dreamed that my discovery four decades ago would lead to such a profitdriven public health disaster. The medical community must confront reality and stop the inappropriate use of P.S.A. screening. Doing so would save billions of dollars and rescue millions of men from unnecessary, debilitating treatments.’ You can read the entire editorial at the following web-link: http://www.nytimes.com/2010/03/10/opinion/10Ablin.html As a consultant in public health medicine with a special interest in evidenced-based commissioning of health services and screening services, and as a member of the BME community, I'm afraid that I''m not in accord with your views expressed in your email. While the circumstances of the patient that you mention are very tragic, they cannot in any way be extrapolated to the population you describe, and needs to be regarded as anecdotal. 75% of all men at the age of 80 will have some evidence of prostate cancer, but only a very small minority of them will die from prostate cancer, inspite of having the disease. I would strongly oppose any prostate cancer screening programme , and I'm willing to debate this in any public forum whatsoever. Regards and best wishes, Ash Dr Ash Paul Medical Director NHS Bedfordshire 21 Kimbolton Road Bedford MK40 2AW Tel no: 01234795705 Email: ash.paul@bedfordshire.nhs.uk From: Rose Thompson <rose.thompson11@NTLWORLD.COM> To: MINORITY-ETHNIC-HEALTH@JISCMAIL.AC.UK Sent: Mon, 8 March, 2010 21:10:55 Subject: Re: 2010 Prostate cancer Annual Evidence Update Haven't read the , Prostate cancer Annual Evidence Update yet, but looking forward to reading it. It is never surprising to me when BME groups are excluded, especially in areas with smaller BME populations. I do understand that in some areas of the UK the numbers of African Caribbeans tiny and we are still not seeing significant numbers of African Caribbeans on In Patient Wards or in cancer treatment centres. However I am still disappointed when the higher prevalence of prostate cancer in this group is not highlighted. African Caribbean men are 3 times more likely to be diagnosed with prostate cancers. Their tumours are more likely to be tigers (faster growing), than pussycats. I unfortunately witness the outcome of what happens when this important validated evidence from the PROCESS study (Prostate Cancer in Ethnic Subgroups), is not disseminated effectively. Professional lack of awareness has an impact on African Caribbean patients and there is now little excuse. Some African men are also at risk. Even the media have covered the subject on more than one occasion in the national news and recently on the ITV 'This Morning' show. Case Study I am currently supporting an African Caribbean couple in the Midlands whose lives have been devastated because health professionals missed the signs and symptoms of the husband's prostate cancer . (I use this case study with their consent). The husband had every symptom of prostate cancer except one. The blood test to check his PSA level (a protein) was not done until the cancer had advanced. Even though it isn't a difinitive test on it's own, it would have almost certainly raised the alarm and this would have been helped if health professionals were aware of the PROCESS study results. I visited the husband in hospital when he was admitted for emergency radiotherapy (RT) to his spine. This interrupted chemotherapy plans. Things deteriorated even further when he fractured his femur walking from the toilet with a nurse . He then had to go to theatre to have a pin inserted and more RT, which further delayed his chemotherapy treatment. The lives of the couple and their children have been turned upside down due to the fact that ethnic data collection has taken so long to happen. In the UK there are still a significant amount of people who are not asked the ethnicity question (Check the National Cancer Intelligence Network ethnicity report, especially the section on prostate cancer). I hear the statement over and over again that staff are wary about asking the question. It is a tired excuse and can easily addressed via a short training session. I could empower a Cancerbackup Helpline nurse in 5 minutes. PCT's and other health services will not fund cancer awareness raising without evidence (preferably local) and evidence comes from data collection. Evidence then has to be interpreted accurately, disseminated and acted upon. As a Cancer Information Specialist, I am aware that many health professionals suffer from information overload, but as prostate conditions are so common and prostate cancer is now the top cancer in men (killing 10,000 men per year), it really is time to wise up. Doctors, especially GP's also need to read the recently updated Prostate Cancer Risk Management Programme document http://www.cancerscreening.nhs.uk/prostate/index.html . African Caribbean men are presenting with prostate cancer at younger ages (about 5 yrs). GP's should be aware that they are more likely to be diagnosed in their 50's than 60's. If they are over 50 and insist on a PSA test having received the relevant information on the pros and cons, they should not be dismissed, especially if younger than expected close family members have already been diagnosed. Early prostate cancer can be asymptomatic and early detection can save lives. Best wishes Rose Rose Thompson (Director) BME Cancer Information and Outreach Consultant t. 0115 840 0709 m. 07813499535 w. www.bmecancer.co.uk BME Cancer Communities is the trading name of Cancer Communities Community Interest Company (Registered in England No 6612426) From: Health of minority ethnic communities in the UK [mailto:MINORITY-ETHNICHEALTH@JISCMAIL.AC.UK] On Behalf Of Mark Johnson Sent: 08 March 2010 14:47 To: MINORITY-ETHNIC-HEALTH@JISCMAIL.AC.UK Subject: FW: 2010 Prostate cancer Annual Evidence Update in view of the importance of this condition to males of african heritage (and if you did not know, this group has higher incidence, worse outcomes, from Prostate cancer), I am somewhat saddened that there seems to be little new evidence directly relating to this at-risk population. However, members may find some of the clinical information of interest - such as the rebuttal of the suggestion that Vit D or sunlight can reduce risks! Mark R D Johnson Director, MSRC/CEEHD De Montfort University Leicester LE2 1RQ 0116 201 3906 From: UK medical/ health care library community / information workers on behalf of Naila Dracup Sent: Mon 08/03/2010 14:11 To: LIS-MEDICAL@JISCMAIL.AC.UK Subject: 2010 Prostate cancer Annual Evidence Update Prostate cancer Annual Evidence Update now available http://www.library.nhs.uk/cancer/viewResource.aspx?resid=345246&code=5bda7cf8357aeace14230a10a82bb6b 5 Please find attached the latest Annual Evidence Update on Prostate cancer which includes a guest editorial by Roger Kockelbergh (Clinical Director & Consultant Urological Surgeon Renal and Urology Services Haemodialysis unit Leicester General Hospital) and a list of clinical guidance and high quality systematic reviews that have been published since March 2009. Please forward this email to your networks and any colleagues you feel may find it relevant. Kind regards, Naila Naila Dracup Information Specialist Naila.Dracup@orh.nhs.uk Tel: 01865 572044 NHS Evidence: Cancer Research Institute, Oxford Cancer and Haematology Centre, Churchill Hospital, Headington, Oxford OX3 7LJ