National Cancer Plan Submission by Men’s Health Foundation Ghana

White paper submitted to the Parliamentary Committee on Health Issues, Ministry of Health and Ghana Health Service

A response to "Implementing the National Cancer Plan

Background

Men's Health Foundation Ghana is a registered charitable organization and Ghana's leading charity working with people affected by prostate cancer. We provide support and information, and campaign to improve the lives of men with prostate cancer. Our aim is to raise awareness of prostate cancer so that everyone can talk more openly about it and people will recognise the significance of this disease.

The Charity welcomes the opportunity to contribute to "implementing the National Cancer Plan: commissioning for patients". We have also provided responses to "Increasing democratic legitimacy in health" and "transparency in outcomes: a framework for the Non Communicable Disease Control Program", which include some further detail on patient and public involvement and outcomes respectively.

To inform our response, the Charity (MHFG) conducted a paper “The factors that might influence the mortality and QOL of Ghanaian men; including the impact of cultural issues and a healthy relationship (Obu 2014) we also seek people affected by prostate cancer, to ask their views on information they received before and after the diagnosis of prostate cancer. We received some responses during the father's day on July 7-2014. Quotes from the respondents are contained within the response.

Prostate cancer is the most common male cancer in Black men. Klufio 2004 conducted a retrospective analysis of the frequency and pattern of genitourinary (GU) cancers seen at the Korle-Bu Teaching Hospital, in Accra, between 1980 and 1990. According to this study, Pca accounted for 349/479 GU cancers in males (81.4 percent).

The GLOBOCAN 2002 database (compiled by Ferlay et al. for the International Agency for Research on Cancer) provides the following data for prostate cancer in Ghana: Estimated number of new cases per year: 921. Estimated number of deaths per year 758. This clearly shows the high prostate cancer mortality rate in the country.

A publication by myjoyonline on August 03, 2012 stated that almost 1,000 Ghanaian men are diagnosed with prostate cancer each year, and yet many are unaware that they have this form of cancer. Also on Aug 7 2007, GNA - Ghana has exceeded global prostate limits as the country records 200 cases out of every 100,000 men as against 170 world-wide, a survey by the Korle-Bu Teaching Hospital revealed.

Men's Health Foundation Ghana interventions

As an NGO concerned about Men's Health we have established a De Men's Clinic & Prostate Research Lab in Dodowa-Akoto House to offer free prostate cancer screening for men concerned about prostate cancer and those in high risk group. The screening is done every Saturday using PSA testing and ultrasound scan to assess prostate volume. Men are counsel first and given balanced information just like the UK practice about the pros and cons of the PSA test for prostate cancer screening before screening.

The Clinic also addresses men diagnosed with prostate cancer that needs more information regarding treatments option and the use of complementary medicine to improve their rate of survival and side effects of conventional treatments.

The charity has also partner with some churches to use the Men's Fellowship to educate them on prostate cancer and why men must be proactive about their own health. Same also applies to corporate institution.

The charity move up and down the communities educating men on prostate cancer and offering free screening for those concerned about prostate cancer.

We have also developed some campaigns to raise awareness on the disease such as
“ MEN UNITED V PROSTATE CANCER” calling on all men to form a united front against prostate cancer as breast cancer campaign for women.

“STAND BY YOUR MAN” for women to support their men diagnosed with prostate cancer and “DO IT FOR DADS” on father's day calling on children to advise their dads to screen for prostate cancer.

We have also partner Amansan TV to educate men on prostate cancer on their morning shows.

The charity interns to establish screening centres across the country and also acquire a mobile van to educate rural men on prostate cancer and also provide free PSA testing and ultrasound .

Executive Summary
Men's Health Foundation Ghana welcomes the principle of The National Cancer Plan that is more responsive to patients, achieves better outcomes and has clear and increased accountability at every level. If GPs are to commission services that best meet patients' needs, tackle inequalities and improve outcomes, there are a number of considerations that need to be taken into account:

• GP consortia will need to ensure they have effective mechanisms to monitor the needs of their local populations and data to help inform commissioning decisions. They will also need an excellent understanding and overview of entire pathways of care.
• Quality Standards must be rapidly developed in order to inform commissioning guidelines, particularly for prostate cancer. These must be based on existing National guidance.
• It is vital that any new model of commissioning will improve clinical and patient experience outcomes in prostate cancer and ensure that all patients have an equal chance of achieving the best outcomes.
• In order to be effective, NHIS, public health, Traditional Medicine Practitioners, Complementary and alternative medicine Practitioners and social care services will need to work together to commission appropriate, integrated cancer services that are tailored to local needs. It is critical that new structures for specialist local and national commissioning use already existing expertise in this area, particularly cancer networks.
• Patient and public involvement cannot be tokenistic and commissioners will need support to ensure that they are using effective methods to reach and engage with all patients and their families. Patients also need appropriate information to help them make meaningful choices. For instance in the UK there is no organised screening programme for prostate cancer but an informed choice programme, Prostate Cancer Risk Management, has been introduced. If you are worried about a specific problem, or otherwise worried about the risks of cancer, then you should talk to your GP.
The aim of Prostate Cancer Risk Management is to ensure that men who are concerned about the risk of prostate cancer receive clear and balanced information about the advantages and disadvantages of the PSA test and treatment for prostate cancer. This will help men to decide whether they want to have the test.
Information packs have been sent to General Practitioners to assist them in the counselling of men who enquire about testing. The pack will help the primary care team to provide men with information on the benefits and limitations of the PSA test. It comprises a reference booklet and summary sheet for the primary care team and a book of tear off patient information sheets. Prostate CancerStats are also included.

• It will be essential to set out at an early stage how progress against outcomes, delivering greater choice, increasing patient and public involvement and tackling inequalities will be measured and meaningfully reported.
• There is a significant need for GPs to have access to further training and support in order to be able to effectively commission local services and improve outcomes, particularly in areas such as prostate cancer diagnosis and survivorship.
• Appropriate support will be necessary to assist all organisations involved in delivering care to patients to meet the very short transition period proposed.
• Men's Health Foundation Ghana would like to see the success of the National Cancer Plan in part measured by the progress made in medical research. This can be achieved by including research and innovation in why black men are more prone to prostate cancer and supporting black men

Full response

GP Commissioning
Men's Health Foundation Ghana welcomes the principle of a National Cancer Plan that is more responsive to patients, acheives better outcomes and has clear and increased accountability at every level. We agree that it is vital that the National Cancer Plan commissioners understand the health needs of a local population, groups of patients and individual patients and that services are designed to best meet their needs. If GPs are to be commissioners, there are a number of considerations that need to be taken into account. These are set out below.

Understanding the health needs of a local population
In order to effectively prioritise and commission services that lead to the best outcomes for patients, GP consortia will have to have an in-depth and expert understanding of the needs of the communities and individuals in the areas they serve. It will be important to ensure that the methods employed by consortia to determine these needs engage and involve representatives from all demographic groups, including people from different socio-economic backgrounds, ethnicities, ages, genders and levels of health literacy. They will also need to ensure that they are not always asking the same groups of people, but are able to accurately measure and track needs across a spectrum of individuals. In order to achieve this, GPs and other commissioners within the consortia will need to be effectively trained and supported in a wide range of user involvement techniques.

“Assuming there is a good relationship between doctor and patient then the GP is in the best position to appreciate the needs and wishes of their patient.”
A respondent quote

Furthermore, it will be very important for GPs and consortia to have an excellent understanding of the entire pathways of care for each condition that an individual in their local communities may have. For example, men with prostate cancer will not only need different treatments according to the stage of cancer they have been diagnosed with, or subsequently develop; they will also have a variety of physical and psychosocial support needs as a result of the life-changing, long-term side effects they may experience following treatment. GP consortia will need to have an excellent overview of the entire treatment, support and social care needs of each group of patients to ensure that sufficient, effective and joined-up services are available that lead to high clinical and patient-reported outcomes.
They must also recognize the importance of evidence based integrative oncology. For instance the most widely used complementary in the UK is aromatherapy as part of palliative care.

“If the new process means that GPs are better informed about cancer services, ask their patients regularly for their views and act on them, they may be able to improve services.”
Patient quote

“Whilst some GPs are excellent there are numerous complaints from men and their families about GP knowledge and attitudes. Without a major shift there is a real danger that more responsibility to GPs will worsen the average prostate cancer [patient's] experience”
respondent quote

It is also crucial that commissioners have access to up-to-date and relevant data to inform their commissioning decisions in order to achieve the best outcomes. There is currently a lack of data on the clinical outcomes for men with prostate cancer: collecting and publishing this information will help increase understanding of the impact of different factors (such as demographics, stage at diagnosis, tumour biology and treatment choice) on mortality. Such data, including patient experience, would also help healthcare professionals and men make informed choices about treatment options. The data should also be fed into discussions between commissioners, providers, specialist teams and patients.

Commissioning guidelines
If commissioning guidelines are to be based on Quality Standards, it is vital that quality standards are rapidly developed for every major disease or disease area. Men's Health Foundation Ghana believe that the needs of the 1,000 men diagnosed with the disease each year in Ghana, and those of men living with and beyond the disease, are specific and significant enough to require specific prostate cancer Quality Standards. These standards need to be based on the best available and most up-to-date clinical guidance.

Improving outcomes and reducing inequalities in prostate cancer
Outcomes for diseases such as prostate cancer range from clinical to patient experience and can depend on tumour biology, treatment options and individual choice. They may cover acute periods of care as well as longer term effects of cancer and its treatment. It is vital that any new model of commissioning will improve all prostate cancer outcomes and ensure that all patients have an equal chance of achieving the best outcomes.

There are two areas where the charity believes GPs can play a vital role, not just as commissioners of care, but also as providers. These are diagnosis and survivorship:

A. Diagnosis

In Africa some of the epidemiological studies have revealed the following incidences of the disease: Ghana >200/100,000, Nigeria 127/100,000 and Cameroun 130/100,000. There is scanty data on prostate cancer in Ghana. More than 70% of Ghanaians presenting with prostate cancer do so very late with locally invasive and metastatic disease and over 80% death .No significant improvement in prostate cancer mortality has been seen and mortality rates appear high in Ghana. (GLOBOCAN 2002). In the UK, national screening programmes have been introduced for breast, cervical and colorectal cancers, helping to reduce mortality from these diseases. However, there is currently no prostate cancer screening programme, despite it being the most common cancer affecting men in the UK. This leaves men at a significant disadvantage to women, who are able to access breast screening from the age of 47.

The Charity recognises that prostate cancer screening with the PSA test is not currently advisable because it would lead to a significant level of over-diagnosis and potential over-treatment of prostate cancer. However, for the first time, it has been demonstrated that screening can reduce mortality. The Charity believes it is now imperative that every man over 40 (and younger men at higher risk of the disease) has access to balanced information about the pros and cons of the PSA test so that they can make an informed and individual choice about whether to have it.

A recommendation on prostate screening come by way of the U.S. Preventive Services Task Force, and is being criticized for calling to curb PSA testing, particularly since Black men comprise those most at risk of dying from the cancer. However, they reportedly only made up about 4% of the Task Force's case study.

Essentially, medical advocates argue that throwing out the PSA test would be a killer for more Black men.

Men's Health Network (MHN) and the Veterans Health Council also stand strongly opposed to the decision to curb testing, claiming that Vietnam-era veterans were also more at risk from over-exposure to Agent Orange.

The group blasted the Task Force for not consulting with the National Cancer Institute, or its studies showing that PSA screening was attributed to a 45-70 percent decline in death rate, as presented at the annual African American Prostate Cancer Disparity Summit .

"The recommendation against PSA testing puts men's lives in jeopardy as they will be discouraged from getting screened for prostate cancer. This especially affects African-American men, men exposed to Agent Orange, and men with a family history, all of whom are at greatest risk of developing prostate cancer and dying from the disease. In the U.S. alone, 30,000 men die from prostate cancer annually, a staggering number. Early detection is key and PSA testing is the best available tool, reducing prostate cancer mortality by 40 percent since its inception," commented Ana Fadich, MPH, CHES, Director of Programs and Health Promotion at MHN.

We also like to comment on the prostate cancer velocity for prostate cancer as it outlined in the National Cancer Plan. The Prostate cancer velocity which is a rapid increase in prostate-specific antigen (PSA) levels is not grounds for automatically recommending a prostate biopsy, according to a study published online February 24, 2011, in the Journal of the National Cancer Institute.

The rate of change in PSA levels, referred to as PSA velocity, has been studied as a marker for the presence of prostate cancer. Clinical recommendations from two organizations, the National Comprehensive Cancer Network (NCCN) and the American Urology Association (AUA), suggest that men with a PSA velocity that exceeds a certain threshold (0.35 ng/ml per year) should consider having a needle biopsy, even if their overall PSA levels are below the standard cutoff for the procedure and they have a normal result on a digital rectal examination (DRE).

The findings from this new study indicate that these recommendations should be revised, the authors concluded.

“Overall, PSA velocity did not importantly add predictive accuracy to a standard predictive model or to just PSA alone,” wrote Andrew Vickers, Ph.D., and his colleagues from Memorial Sloan-Kettering Cancer Center (MSKCC). “We found no reason to believe that implementation of the guideline would improve patient outcomes; indeed, its use would lead to a large number of unnecessary biopsies.”

PSA velocity falls under the general umbrella of what is often called PSA kinetics—assessing PSA levels dynamically over time, explained Howard Parnes, M.D., of NCI's Division of Cancer Prevention. In addition to PSA velocity, PSA kinetics also includes measures such as how long it takes for PSA levels to double.

“Intuitively, you would think you could get more useful information by looking at a change in a biomarker over time,” Dr. Parnes said. The study results indicate that this is not the case with PSA velocity. “You can understand why urologists feel that if the PSA is going up, a biopsy should be offered, because they don't want to miss a cancer,” he added.

To conduct the study, the researchers used data from more than 5,500 men in the placebo arm of the NCI-funded Prostate Cancer Prevention Trial (PCPT). In that clinical trial, men ages 55 or older with a PSA level below 3.0 ng/ml and a normal DRE result at study entry were randomly assigned to receive either the drug finasteride or a placebo.

In addition to receiving regular PSA tests and a prostate biopsy recommendation for PSA levels of 4.0 ng/ml or higher, the majority of these men also underwent end-of-study biopsies irrespective of PSA levels. As a result, the study authors wrote, “the PCPT provides a perfect test case for PSA velocity” throughout the entire range of PSA values.

Researchers looked at whether a PSA velocity above the 0.35 ng/ml per year threshold—when added to a standard risk model that includes age, PSA level, DRE result, family history of prostate cancer, and history of a prior prostate biopsy—improved the model's predictive accuracy. The analysis was broken out by different methods for measuring PSA velocity as well as by whether PSA velocity might improve the detection of more aggressive cancers (defined as those with a Gleason score of 7 or higher) and “clinically significant” cancers (defined by the commonly used Epstein criteria).

In all cases, the addition of PSA velocity yielded only a slight difference in the model's predictive accuracy. In fact, the analysis indicated that lowering the PSA threshold for a biopsy from 4.0 ng/ml to 2.5 ng/ml would be a more effective means of directing prostate biopsies.

Adding PSA velocity to the model would have identified 115 additional cancers (although not necessarily fatal cancers) but also resulted in 433 “unnecessary biopsies” that would have shown no cancer. Lowering the PSA threshold for biopsy to 2.5 ng/ml would have led to nearly the same number of unnecessary biopsies but identified 24 more cancers.

“The decision to proceed to prostate biopsy should be based not only on an abnormal PSA and/or digital rectal examination results, but should take into account multiple factors,” said Peter Carroll, M.D., chair of the Department of Urology at the University of California School of Medicine, in a statement from the AUA on the study findings. PSA velocity can “on occasion” be one of those factors, he said.

In clinical practice, for men who have previously had a prostate biopsy, an increase in PSA velocity often leads to a repeat biopsy, Dr. Parnes explained. In such situations, he recommended using the risk calculator Exit Disclaimer developed by PCPT investigators using data from the trial. (The risk model used in the JNCI study was based on that tool.) The online calculator estimates the likelihood that a biopsy will detect prostate cancer in general and high-grade prostate cancer in particular. We must therefore be looking for a better marker for prostate cancer diagnosis.

GPs play a crucial role in providing such information to men: currently the Department of Health provides GPs with the necessary information to help men consider the issues around the PSA test through the Prostate Cancer Risk Management Programme (PCRMP) in the UK.

About the Prostate Cancer Risk Management Programme in the UK
There is no organised screening programme for prostate cancer but an informed choice programme, Prostate Cancer Risk Management, has been introduced.

Why isn't there a national screening programme for prostate cancer?
All screening programmes cause some harm. This could include false alarms, inducing anxiety, and the treatment of early disease which would not otherwise have become a problem.

When considering population screening programmes the benefits and harms must be carefully assessed, and the benefits should always outweigh the harms.

Until there is clear evidence to show that a national screening programme will bring more benefit than harm, the NHS will not be inviting men who have no symptoms for prostate cancer screening.

In 1968, Wilson and Jungner of the World Health Organisation developed ten principles which should govern a national screening programme. These are:

The condition is an important health problem
Its natural history is well understood
It is recognisable at an early stage
Treatment is better at an early stage
A suitable test exists
An acceptable test exists
Adequate facilities exist to cope with abnormalities detected
Screening is done at repeated intervals when the onset is insidious
The chance of harm is less than the chance of benefit
The cost is balanced against benefit

To date, prostate cancer screening fulfils only the first condition. See the Health Technology Assessment Programme's monograph Diagnosis, management and screening of early localised prostate cancer: a review for details.

Evidence from a prostate cancer screening trial in Europe, ERSPC, has shown that screening reduced mortality by 20 per cent. However, this was associated with a high level of over treatment. To save one life, 48 additional cases of prostate cancer needed to be treated.

Following research evidence published in 1997 the UK National Screening Committee recommended that a prostate cancer screening programme should not be introduced in England. This policy was reviewed in Dec 2010 but no significant changes were made. It is due to be considered again in 2013/14, or earlier if significant new evidence emerges.

Although evidence does not yet support population screening for prostate cancer there is considerable demand for the PSA test amongst men worried about the disease. In response to this, the Prostate Cancer Risk Management programme was introduced in September 2002.

The PCRM provides high quality information to enable men to decide whether or not to have the PSA test based on the available evidence about risks and benefits. After consideration of this information and in discussion with their GPs, men over 50 who choose to have the test may do so free of charge, on the NHS.

However, Men's Health Foundation Ghana believes that the opportunity to make an informed choice is currently outside the reach of most men. This is because there is a significant lack of awareness about prostate cancer and the PSA test among men, who are therefore not enabled to go to their GP to gain information about the test. This lack of awareness is higher among men from low socio-economic backgrounds and is an inequity that is completely unacceptable and must be urgently addressed. Furthermore, a low level of awareness of the PCRMP amongst GPs inhibits the effective and consistent provision of this information to men.

“Sadly some GPs are still blinkered about the importance of PSA testing and seem to think prostate cancer is an old man's disease with a low priority.”
respondent

There is a need for increased awareness of PSA testing and the PCRMP among GPs, not only to ensure that all men have the opportunity to take a test which can indicate a problem that might be cancer, but also to ensure that effective and integrated services are commissioned. These include pathology services, clear referral pathways and further diagnostic tests, usually carried out at a secondary care level. Guidance such as the PCRMP as practice in the UK and referral guidelines must be considered but regularly updated and communicated effectively.

Almost 1 in 4 black men affected by prostate cancer surveyed by The Prostate Cancer UK thought that GP commissioners would lead to a worsening of existing services to diagnose prostate cancer. However, the same proportion of respondents thought that GP commissioning could make improvements to diagnosing prostate cancer.

It will be necessary to incentivise GPs to improve the diagnosis of all cancers, monitoring proxies for outcomes such as stage at diagnosis, timescales and access to appropriate tests. This would help to improve the quality of care provided by GPs, increase the further care and treatment options for cancer patients and ultimately positively impact on cancer outcomes. As part of this, the integration of public health and the work of local authorities to improve the early diagnosis of cancer will need to be joined up to that of GPs as the first healthcare professional likely to suspect a cancer diagnosis. GPs must also consider moving away from their more recently established role of gatekeepers who regulate referral to diagnostic clinics in secondary care, allowing more patients to access diagnostic tests that could lead to improved outcomes and experience through the early diagnosis of disease.

A consensus view on the early detection of prostate cancer, led by experts at the Prostate Cancer World Congress, Melbourne, 7–10thAugust 2013

Recent guideline statements and recommendations have led to further confusion and controversy regarding the use of Prostate Specific Antigen (PSA) testing for the early detection of prostate cancer. Despite high-level evidence for the use of PSA testing as a screening tool, and also for its role as a predictor of future risk, the U.S. Preventive Services Taskforce (USPSTF) has called for PSA testing to be abandoned completely , and many men are therefore not given the opportunity for shared decision-making. Other groups such as the American Urological Association, National Comprehensive Cancer Network, and European Association of Urology support a role for PSA screening but with somewhat conflicting recommendations. The majority of guideline statements have endorsed the role of shared decision-making for men considering PSA testing.

To address these somewhat conflicting and confusing positions, a group of leading prostate cancer experts from around the world have come together at the 2013 Prostate Cancer World Congress in Melbourne and have generated the following set of consensus statements regarding the use of PSA testing. The goal of these statements is to bring some clarity to the confusion that exists with existing guidelines, and to present reasonable and rational guidance for the early detection of prostate cancer today.

1. Consensus Statement 1: For men aged 50–69, level 1 evidence demonstrates that PSA testing reduces prostate cancer-specific mortality and the incidence of metastatic prostate cancer. In the European Randomized Study of Screening for Prostate Cancer (ERSPC), screening reduced metastatic disease and prostate cancer-specific mortality by up to 30% and 21% respectively in the intent-to-treat analysis, with a greater reduction after adjustment for noncompliance and contamination. In addition, the Goteborg randomized population-based randomized trial showed a reduction in metastatic disease and prostate cancer mortality with screening starting at age 50 . The degree of over-diagnosis and over-treatment reduces considerably with longer follow-up, such that the numbers needed to screen and numbers needed to diagnose compare very favourably with screening for breast cancer. While routine population-based screening is not recommended, healthy, well-informed men in this age group should be fully counselled about the positive and negative aspects of PSA testing to reduce their risk of metastases and death. This should be part of a shared decision-making process.

2. Consensus Statement 2: Prostate cancer diagnosis must be uncoupled from prostate cancer intervention. Although screening is essential to diagnose high-risk cases within the window of curability, it is clear that many men with low-risk prostate cancer do not need aggressive treatment. Active surveillance protocols have been developed and have been shown to be a reasonable and safe option for many men with low-volume, low-risk prostate cancer . While it is accepted that active surveillance does not address the issue of over-diagnosis, it does provide a vehicle to avoid excessive intervention. Active surveillance strategies need standardization and validation internationally to reassure patients and clinicians that this is a safe strategy.

3. Consensus Statement 3: PSA testing should not be considered on its own, but rather as part of a multivariable approach to early prostate cancer detection. PSA is a weak predictor of current risk and additional variables such as digital rectal examination, prostate volume, family history, ethnicity, risk prediction models, and new tools such as the phi test, can help to better risk stratify men. Prostate cancer risk calculators such as those generated from the ERSPC ROTTERDAM (www.prostatecancer-riskcalculator.com), the Prostate Cancer Prevention Trial (PCPT) (http://deb.uthscsa.edu/URORiskCalc/Pages/uroriskcalc.jsp), and from Canada (prostaterisk.ca), are useful tools to help men understand the risk of prostate cancer in these populations. Further developments in the area of biomarkers, as well as improvements in imaging will continue to improve risk stratification, with potential for reduction in over-diagnosis and over-treatment of lower risk disease.

4. Consensus Statement 4: Baseline PSA testing for men in their 40s is useful for predicting the future risk of prostate cancer. Although these men were not included in the two main randomized trials, there is strong evidence that this is a group of men who may benefit from the use of PSA testing as a baseline to aid risk stratification for their likely future risk for developing prostate cancer , including clinically significant prostate cancer. Studies have shown the value of PSA testing in this cohort for predicting the increased likelihood of developing prostate cancer 25 years later for men whose baseline PSA is in the highest centiles above the median . For example, those men with a PSA below the median could be spared regular PSA testing as their future risk of developing prostate cancer is comparatively low, whereas those with a PSA above the median are at considerably higher risk and need closer surveillance. The median PSA for men aged 40–49 ranges from 0.5–0.7 ng/ml, with the 75th percentile ranging from 0.7–0.9ng/ml. The higher above the median, the greater the risk of later developing life-threatening disease. We recommend that a baseline PSA in the 40s has value for risk stratification and this option should be discussed with men in this age group as part of a shared decision-making process.

5. Consensus Statement 5: Older men in good health with over ten year life expectancy should not be denied PSA testing on the basis of their age. Men should be assessed on an individual basis rather than applying an arbitrary chronological age beyond which testing should not occur. As life expectancy improves in many countries around the world (men aged 70 in Australia have a 15 year life expectancy), a small proportion of older men may benefit from an early diagnosis of more aggressive forms of localised prostate cancer, just as it is clear that men with many competing co-morbidities and less aggressive forms of prostate cancer are unlikely to benefit irrespective of age. Likewise, a man in his 70s who has had a stable PSA at or below the median for a number of years previously is at low risk of developing a threatening prostate cancer and regular PSA screening should be discouraged.

An important goal when considering early detection of prostate cancer today, is to maintain the gains that have been made in survival over the past thirty years since the introduction of PSA testing, while minimizing the harms associated with over-diagnosis and over-treatment. This is already happening in Australia where over 40% of patients with low-risk prostate cancer are managed with surveillance or watchful waiting , and in Sweden where 59% of very low risk patients are on active surveillance. This is also reflected in current guidelines from the EAU, NCCN and other expert bodies, and in a comment from AUA Guideline author Dr Bal Carter in the BJU International.

Abandonment of PSA testing as recommended by the USPSTF, would lead to a large increase in men presenting with advanced prostate cancer and a reversal of the gains made in prostate cancer mortality over the past three decades.

However, any discussion about surveillance is predicated on having a diagnosis of early prostate cancer in the first instance. As Dr Joseph Smith editorialized in the Journal of Urology following the publication of the ERSPC and PLCO trials, “treatment or non-treatment decisions can be made once a cancer is found, but not knowing about it in the first place surely burns bridges” A key strategy therefore is to continue to offer well-informed men the opportunity to be diagnosed early, while minimizing harms by avoiding intervention in those men at low risk of disease progression. This consensus statement provides some guidance to help achieve these goals.

Should Ghanaian men screen for prostate cancer?
Based on what is currently known, can prostate cancer screening be recommended for the Ghanaian men? Would it positively impact upon the health of Ghanaian men people and would it be a feasible and cost-effective intervention? Would it also be able to compete with other health interventions for the limited funding for healthcare that is available? Men's Health Foundation Ghana do not pretend to be able to answer these questions but given the high prostate cancer mortality rates in the black community like Ghana and the ageing of the populations, We believe that it is time for the relevant authorities in the Ghana and black territories to consider this issue. The criteria which should be satisfied for implementing a screening programme as suggested by Junger and Wilson in 1968 should serve as a guide in considering this potentially contentious issue. Ghana also needs the prostate cancer risk management program (PCRMP) as practiced in the UK and the Melbourne Consensus guidelines on Prostate cancer Screening. The prostate cancer policy screening in Ghana should be a universal accessible for all men who are concerned about prostate cancer unlike the UK practice from 50years and above.

The criterion that the disease be an important health problem is readily satisfied by the high mortality rates in the Ghana and black community. Its natural history is reasonably well-known and it has a clear preclinical phase which is identifiable through the use of the tumour marker PSA. The operating characteristics of PSA are well-known and favourable towards cancer detection. On weighing the available evidence relating to the efficacy of PSA-based prostate cancer screening, one could infer that there would be a net benefit to screening in reducing prostate cancer specific mortality in high risk Black populations. The screening tests are relatively inexpensive and the PSA test is acceptable to men although cultural resistance to the DRE exists. There exist sufficient resources and personnel for follow-up and treatment of identified disease, at least in some Caribbean territories where there are enough trained urologists. However, more radiation and clinical oncologists are needed, particularly for some high risk cancers where a multidisciplinary approach is favoured. On the downside, over-detection and over-treatment of clinically insignificant cancers in screened men with the potential for net harm over benefit is a real possibility as suggested by the ERSPC.

We believe it is time to seriously consider doing feasibility studies on Prostate cancer screening as something urgently needs to be done to stem the comparatively high mortality rate affecting Ghanaian men from this common disease.

Early detection programmes for Prostate cancer exist in Jamaica through the work of the Jamaica Cancer Society in collaboration with the Jamaica Urological Society. Men 40 years and older with at least a 10-15-year life expectancy are encouraged to have an annual digital rectal examination (DRE) and PSA blood test. Very few men, however, seem to heed this call. A recent study by Morris of 2000 Jamaican men over 55 years revealed that only 35% of them had done a prostate check (Morris, 2009 - Personal communication). Forty-one per cent of the men reported that the reason for this was that they had not been advised by their doctors to have one done.

Health behaviour in general is gender related with women being more likely than men to practice health-promoting behaviours. Seeking healthcare is viewed by men to be associated with femininity while illness is associated with weakness and vulnerability. These gender differences in health-seeking behaviour is exemplified by statistics on screening from the Jamaica Cancer Society indicating that in 2009 whereas 13 168 women presented for mammography and pap smears, only 464 men presented for prostate cancer screening in the corresponding period (personal communication).

Other significant barriers exist to accessing prostate cancer screening by Jamaican men. Research is required in this area but these barriers probably include cultural views and expectations of manhood, poverty, ignorance, apathy, fatalism, stoicism, denial of risk, difficulty accessing preventive care, and specific issues related to the digital rectal examination (DRE). Many men resist having the DRE possibly due to its cultural unacceptability and existing taboos regarding anal penetration of whatever kind. However, reluctance to have the DRE is not unique to Jamaican men as African-Canadian men have been noted to avoid the DRE due to the perceived association with homosexuality.

Currently we have stated a pilot program in establishing free prostate cancer screening in Dodowa-Akoto House using PSA and ultrasound to assess the prostate Volume. We counsel men about the Pros and Cons about the PSA test before screening and is based on the Prostate Cancer risk management Program(PCRMP) and Melbourne Consensus Statement no 3.

What we want the National cancer Plan to do for Men

The Charity wants a National Cancer plan to involve free PSA testing for men concerned about prostate cancer under the NHIS but before testing men should be given a balanced information about the pros and cons of the PSA testing for prostate cancer, side effect of treatments, statistics of prostate cancer and side effect of biopsy and men must make their informed decision on testing and treatments based on information given for men 40years and above but men in a high risk group like family history of the disease can start screening from 35years just like the prostate cancer risk management program in the UK.

The charity (MHFG) is also ready to collaborate in any form to send the message to the people.

B. Survivorship
Men who are undergoing or who have completed treatment for prostate cancer often experience life-changing side effects that can have a significant impact on the quality of their daily lives. These include urinary incontinence, erectile dysfunction and loss of libido, and problems with emotional wellbeing, including anxiety and depression. A significant number of men are given hormone therapies to treat their disease and may take these for long periods of time. They additionally experience a range of side effects including hot flushes, fatigue and changes in mood. Many men, and their partners, report that they find these side effects difficult to cope with and that they have a significant impact on their lives.

Although services appear to exist, men have told Men's Health Foundation Ghana that they are not getting the support they need. It is vital that GPs, as providers and commissioners of care, ensure that there are integrated health and social care services in all areas of the country that have the specific expertise to help men living with and beyond prostate cancer manage the impact of the disease and maintain a good quality of life. Emotional support services appear to be less commonly available and incentives may need to be considered to ensure that GPs prioritise the provision of psychological support services to help men and their families cope with the impact of prostate cancer.

The need for support to deal with the side effects of treatment is not unique to men with prostate cancer. We also think we need National Cancer Survivorship and integrative Oncology must be considered and research must be supported by commissioners to ensure a long-term improvement in outcomes for cancer survivors. Survivorship in cancer is an underdeveloped area in the Ghana, and nationwide - rather than purely locality-based - approaches are key to ensuring the critical improvements which are needed.

“I spent 12 weeks at home following surgery with a catheter and a stent. My GP made no contact at any time during this period. They were not even aware of the services available from their own practice.”
Respondent

Commissioners will need to work together to identify services which support cancer patients. Clinical nurse specialists will be very important advisers on this. As noted above, erectile dysfunction clinics, incontinence services and psychological support services play a key role in a prostate cancer patient's care, experience and reported outcomes. Collaboration between complementary and alternative practice must also be considered as complementary and alternative Therapies have been proven to support patient's quality of life and rate of survival. In the US for instance about 95% of cancer treatments centres have developed integrative therapies and it role have been defined. For instance in the UK the Macmillan Cancer Relief commissioned Dr. Michelle Kohn to evaluate the state of CAM in the UK Summary. Three key role model of how these therapies work have been outlined, so desperate patients seeking for alternative therapies don't end up in quake practitioner's hand who will promise cure.

Specialised cancer commissioning
In order to have effective National Cancer Plan public health and social care services will need to work together to commission appropriate cancer services that are tailored to local needs. The services experienced by patients should be effectively aligned, and focus will be needed to ensure they are integrated.

Men's Health Foundation Ghana believes that it will not be appropriate to commission all cancer services at the level of GP consortia, as GP practices will not have sufficient patient numbers with certain types of cancers, or from specific age groups, to make effective and efficient commissioning decisions. We are also concerned that GP consortia will not have all the necessary skills or knowledge to effectively commission all cancer services. For example, the delivery of radiotherapy services is one area where specialist commissioning may be necessary. Radiotherapy services require careful planning to address future need, which is affected by the number of patients being diagnosed with cancer and the expected improvements in radiotherapy techniques and technologies. Naturopathic Physicians play a critical role in integrative oncology so that we can curb the mortality rates in Ghana. The Traditional Practitioners must also be educated in prostate cancer for proper referral system as many are also confusing patients about BPH and prostate cancer. They must understand the needs to collaborate with Urologist in the health sector. In this way we are going to have good team to help in addressing men's prostate health issues as most people these goes to herbal centres.

The Charity strongly believes that existing cancer networks should have an integral role in the commissioning of cancer services, and a particular responsibility for ensuring continuity across different types of commissioning as well as sharing examples of best practice. Cancer networks, GP consortia and local authorities will need to establish effective ways of working in order to ensure that cancer services are fully integrated across all providers and patients receive seamless care. Cancer networks should also work with local commissioners to select appropriate priorities that really matter to people affected by cancer in their area and where there is the biggest unmet need.

There is a danger that variations in access and outcomes across the country will be increased under a locally commissioned health service. As outlined in the National Cancer Equality Initiative report, inequalities currently persist in areas such as age, gender, sexuality and ethnicity. There are also significant geographical variations where inequities are present. These inequalities can be reduced by ensuring that every cancer patient has access to a cancer nurse specialist, providing high quality, comprehensive information to all patients, ensuring that patients have choice of treatment (where clinically appropriate) and making sure that services are set up to meet the needs of different groups. For example, extended opening hours and "drop-in" sessions may be more accessible to men and people from lower socioeconomic backgrounds.

Commissioners will also need to consider how they will ensure patients are given a full choice of clinically relevant treatments including the latest surgical techniques, radiotherapy treatments and drugs, without discrimination because of local availability.

Men's Health Foundation Ghana has a clear goal to ensure that current geographical and socio-economic inequalities in access to the best knowledge and services on prostate cancer are reduced. The results of the introduction of GP commissioning on inequalities in prostate cancer care will be monitored by the Charity and highlighted to commissioners and the public.

Patients at the centre of the National Cancer Plan
The Charity welcomes the focus on patients at the centre of the NHS and has responded in detail to the “Democratic legitimacy” consultation. Patient and public involvement cannot be tokenistic, however, and commissioners will need support to ensure that they are using effective methods to reach and engage with patients and their families, of all backgrounds. The effectiveness of these techniques will need to be regularly reviewed to ensure that all patients are at the heart of the National Cancer Plan and that a broad level of engagement is attained.

It is also key that commissioners are able to provide the information patients will need in order to make meaningful choices. This information must be in appropriate formats for people from all demographic groups, including individuals with low health literacy and those who are not currently engaged with the health service, to sure equity in choice and access to treatments.

“I feel that the role of the GP is vital in providing information about prostate cancer... GPs should be able to advise men about the treatment of side effects.”
Respondent quote

Accountability
The White Paper sets out the factors that will help to determine how well GP consortia are progressing against outcomes, delivering greater choice, increasing patient and public involvement and tackling inequalities. It will be essential to set out at an early stage how such progress will be measured and reported. Regular public updates, at all levels of commissioning and at a national level, will be necessary to ensure that commissioners are accountable to the people they serve. Alongside such updates, there will be a need for clear information to help people understand the measurements, what progress looks like and what steps will be taken should progress not be achieved.

Education and support
As set out above, there is a great need for GPs to have access to further training and support in order to be able to effectively commission local services and improve outcomes, particularly in areas such as prostate cancer diagnosis and survivorship, as well as to successfully engage patients, improve information and choice, and tackle health inequalities. For example, the Charity has encountered a number of anecdotal examples of lack of understanding by GPs about what could be regarded as the basics of prostate cancer diagnosis - such as (erroneously) that a man cannot have prostate cancer unless he is exhibiting symptoms.

Specific additional training will also be needed in areas such as risk analysis, procurement, data management and health economics. Furthermore, the transfer of commissioning responsibilities to GPs will impact on their capacity to provide primary care services to patients: this will need to be accounted for to ensure it does not have a negative impact on patients' care or outcomes.

It will be important that care is taken to ensure continuity of services during the transition from the current to eventual new commissioning structures. Appropriate support will be necessary for all organisations involved in delivering care to patients, including primary and secondary care providers, commissioners, local authorities and charities.

For example, in the UK, Health workers who are interested in working with men affected by Prostate cancer are also sponsored for the Master's Program in Prostate Cancer developed by the Prostate Cancer UK in collaboration with Sheffield Hallam University UK to be able to support men affected by prostate cancer and we think the National Cancer Plan should be looking at partnering institutions of higher learning to run courses in prostate cancer for health workers and this will reduce the prostate cancer mortality rates in the country. The role of the Prostate Cancer Specialist was defined by the Prostate Cancer UK as;

The practitioner has in-depth knowledge and expertise in the management of prostate cancer. This should include knowledge about the psychosocial needs and priorities of men and their families, as well as the clinical aspects of the disease and the various treatment options. The prostate cancer specialist should act as an ambassador for their patients and a peer supporter for other healthcare professionals involved in their care. As an ambassador they should be able to cascade information about a range of issues to colleagues from different health and social care disciplines, including non-registered practitioners. They should be experts at a local level, but also have the potential to engage with and influence agendas and policy at a national level.

Further information
Many thanks for considering this submission from Men's Health Foundation Ghana. If you have any further questions, please contact Raphael Nyarkotey Obu: ND. Registered Naturopathic Doctor(TAP 00396),MSc Prostate Cancer –Sheffield Hallam University UK, Prostate Cancer Survivorship Certificate, The University of MD Anderson Cancer Centre , USA , Botanical Medicine & Integrative Therapies certificate , University of Minnesota. Project Lead, at [email protected] or 0541090045.

Men's Health Foundation Ghana, we lead change; we campaign for better services for men. We believe men deserve better treatment for prostate cancer and we raise awareness on prostate cancer.