December 2011 Update: Cancer research

Issue 14 – 15 December 2011


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The Health Improvement and Innovation Resource Centre (HIIRC) website contains the latest New Zealand and overseas health news and information. The HIIRC Update takes a closer look at particular topics on the website, and this issue focuses on cancer research.

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Ministry of Health and HRC invest in major new cancer research

The Ministry of Health and the Health Research Council of New Zealand (HRC), through the HRC's Partnership Programme, have co-invested in three new cancer research projects over the next three years.

The projects will build knowledge of the incidence and impact of three particular cancers in New Zealand, and how health professionals, from primary care through to specialists, work together delivering treatment. The projects are:

Bowel Cancer – an internal examination of colorectal cancer management in New Zealand

Budget: $1 million

Each year colorectal cancer (CRC) kills around 1200 New Zealanders – more than breast and prostate cancer combined. Māori are more than twice as likely to die once diagnosed with CRC than New Zealand Europeans. Differences in survival have also been suggested to occur among people living in rural areas.

The three-year PIPER project – Presentation, Investigation, Pathways, Evaluation, Rx (treatment) – will be the largest and most comprehensive study of patient outcomes from CRC ever undertaken in New Zealand. It will examine everything about the management of more than 6,000 CRC patients, including patients' characteristics, their cancers, the treatment they receive and their outcomes.

Principal Investigator Professor Michael Findlay, of Cancer Trials New Zealand, says New Zealand has amongst the worst CRC outcomes in the developed world.

'If we are going to turn this around, we have to understand what is happening at the individual patient level. We hope this study will be a major step in helping to improve the health care we deliver for people with colorectal cancer. This investment by the Ministry of Health and the HRC recognises the importance of colorectal cancer in New Zealand, and is a major step in the right direction.'

Each year colorectal cancer kills around 1200 New Zealanders – more than breast and prostate cancer combined. Māori are more than twice as likely to die once diagnosed with CRC than New Zealand Europeans.

The project's Clinical Lead, Dr Christopher Jackson, says the project is a major investment that will deliver major rewards, provide a quality improvement benchmark for CRC health services, and be a real touchstone for New Zealand cancer research.

'Importantly, it will be a national collaboration of specialists from many diverse disciplines.'

Dr Jackson says any recommendations from the research have the greater potential to translate into meaningful improvements along the treatment pathway for patients because the researchers are also involved in health care delivery.

Through a review of public hospital patient records and case notes, the investigators will carefully scrutinise the investigation, treatment and the overall care individual patients have received.

'We're also hoping to extend our research to the private sector. This will be at the discretion of the private providers, but based on experience in other studies we anticipate a high level of support from this sector and expect useful information to emerge.'

Previous research comparing 300 Māori and 300 non-Māori patients found that Māori had slightly worse clinical outcomes and slightly longer waiting times at every step of the journey.

'But 'why' isn't clear. Is it because more Māori are rurally-based, or have more co-morbidities or worse access to radiation treatment or CT or MRI scanning? We're confident that by looking at this in more detail with such a large number of patients, we'll be able to throw some light on that,' says Dr Jackson.

'This research won't tell us why we have higher rates of colon cancer than so many other countries, but hopefully it will tell us what health systems factors lead to worse patient outcomes and identify the key elements of care that improve outcomes.

'Then we can focus on improving those key factors that make a meaningful difference so that everyone gets a good deal in their treatment, irrespective of where they live.

'The other outcome here is that lessons learnt about systems improvement in the PIPER study for colorectal cancer can be applied to the management of other cancers.'

Palliative care – Culturally appropriate end of life care for Māori

Budget: $803,763

The aim of this three-year project is to investigate whether and how the addition of cultural goals to the Liverpool Care Pathway for the Dying Patient (LCP) has positively supported appropriate end of life care for Māori patients and their whānau receiving care within the MidCentral DHB region.

The project is a partnership between the Research Centre for Māori Health and Development at Massey University, Arohanui Hospice, The National LCP office and the Māori health service, Te Wakahuia o Manawatu Trust.

The LCP is an internationally adopted, multi-setting, evidence-based, integrated care tool for planning, decision-making, and documenting health care in the last days and hours of life. It was gradually introduced in New Zealand following a successful pilot in 2004-2005, and is now widely used throughout the country across primary, community and secondary care services.

Dr Maureen Holdaway, from Massey's Research Centre for Māori Health & Development, says during the LCP's adoption in New Zealand, a gap was identified related to the generic international LCP approach to cultural care.

'In the UK version, cultural care is included under the goal of spiritual and religious assessment. Clinicians here recognised that this was inadequate to ensure that cultural needs were comprehensively assessed and addressed for all New Zealand patients and their families and whānau, and specifically for Māori.'

'The significant disparities that exist for Māori cancer and chronic disease outcomes and access to palliative care are well documented. So it's important that palliative care services for Māori are culturally relevant and don't duplicate or magnify these inequalities.'

As a result, two new 'cultural goals of care' were developed when the tool was introduced here. One relates to the assessment of cultural needs and support requirements for patients, family and whānau, and the other to arrangements for the blessing of rooms.

Dr Holdaway says there haven't been any studies to examine the cultural goals of care from either the perspective of patients and their families and whānau or health professionals, or to investigate if and how the two cultural goals of care positively support culturally appropriate care for Māori.

'The significant disparities that exist for Māori cancer and chronic disease outcomes and access to palliative care are well documented. So it's important that palliative care services for Māori are culturally relevant and don't duplicate or magnify these inequalities.'

The first of three phases of the research is a stock take of the cultural goals of care from the time of their adoption into the LCP. A retrospective chart audit and interviews with key stakeholders, such as LCP coordinators, clinical nurse educators, clinical nurse specialists, whānau support workers, Māori health providers, clinicians and others involved in the development and use of the LCP tool since its implementation, have already been completed.

The next phase sees the research team engaging with Māori providers, iwi and Māori communities to find out what they feel are the most appropriate ways to care for people in their last days or hours of life. This phase is currently underway.

In phase three, the team will develop and pilot a culturally appropriate New Zealand version of the LCP end-of-life pathway. This will be developed in partnership with Māori communities, care providers and other interested groups.

Dr Holdaway says there's been an enthusiastic response to the research. Some areas for improvement identified in the first phase, such as standardising the way ethnicity data was collected and recorded, have already been put into place.

'Because clinicians are involved in the research team, it's been easy to recruit stakeholder participants and to make clinical changes as the findings have emerged.'

The team also meets twice a year with a Māori governance group, which has wide-ranging representation.

'It is great to work on a project where we can see that the knowledge gained can be immediately translated into clinical practice to improve quality of care.'

Prostate Cancer – The costs and complications of screening for prostate cancer

Budget: $898,000

The University of Auckland, in partnership with the Midland Cancer Network, began a three-year research project earlier this year, exploring the costs and complications of screening for prostate cancer and, once men are diagnosed, the pathways of care for prostate cancer treatment.

Prostate cancer is the most commonly registered cancer for New Zealand men.

Principal Investigator and Head of the University of Auckland's Waikato Clinical School, Professor Ross Lawrenson, says the research team will study the pathways of care following an abnormal PSA test – the screening test for prostate cancer.

'We are looking at what goes on in screening for prostate cancer in general practice and the pathways of care for men who are diagnosed, and will conduct in-depth interviews with 100 men who have had treatment for prostate cancer, including a significant proportion of Māori.'

Professor Lawrenson says treatment options for prostate cancer in New Zealand vary, and are often based on patient choice. 'There isn't much information about the wider complications of prostate cancer, including the social and psychological impacts.

'We know a lot of PSA tests are being done, but we don't know what GPs do with the results, so we don't know which patients are being referred to a specialist or what the specialist does once they've had a patient referred with a raised PSA test.'

He says researchers will be looking at which patients take up different treatments and the complication rates, either from their cancer or their treatment.

Prostate cancer is the most commonly registered cancer for New Zealand men.

It's not known what proportion of men are having a prostatectomy (the surgical removal of all or part of the prostate gland), or are being biopsied, or aren't having any treatment.

'Many will receive active surveillance because prostate cancer is very slow growing in most patients, and many men won't have any complications from it. However, many will have substantial complications from the treatment of this cancer.

'We'll also look at whether there are any variations in treatment, such as whether living in a major centre with good access to services means you get a different sort of care than a rural patient who may not have the same information about the various options available at their finger tips.'

Professor Lawrenson says the financial cost associated with diagnosis and treatment of prostate cancer – both for the health service and the patient – and who pays, is not well understood, and this will also be looked at later in the study.

'It's not just the cost of the test, but the full potential follow-up cost of the chosen treatment pathway that can be incurred by doing the test.'

The project is already underway and Professor Lawrenson says the research team has had very good buy-in from local PHOs and GP practices that are keen to be part of the study, which he says is very much a partnership between the University of Auckland and the Midland Cancer Network.

'It's the first big research project for the Midland Cancer Network and the team is thrilled to have been awarded the grant.

'It has provided a real boost to the Network, and is a wonderful opportunity to involve general practitioners in a study of the cancer pathway.

'It has also allowed us to engage with Māori providers across the region and provided an opportunity for local Māori staff and researchers to take a leadership role. I believe it is already demonstrating the value of closer relationships between GPs and specialists.'

Find out more.


Major project to improve early diagnosis and management of lung cancer patients

The Northern Cancer Network is undertaking a major project to identify barriers to the early diagnosis of lung cancer, and to develop recommendations to improve health care services for people with lung cancer.

Lung cancer is the leading cause of cancer deaths in New Zealand, and Māori in particular have very poor survival outcomes.

Lead researcher, Dr Wendy Stevens, says New Zealand survival outcomes are also worse than many other developed countries, including Australia, the USA and Canada, so this suggests we can manage lung cancer better.

The three-year project is assessing the lung cancer journey from first presentation to the health care system until diagnosis, with a focus on barriers to optimal care within primary care, and the interface between primary and secondary care.

'Worldwide it's believed that the poor prognosis from lung cancer is largely due to late diagnosis, so that's why the focus of this project is working out how we can diagnose lung cancer early,' says Dr Stevens.

'And while a previous project documented the secondary care component of the clinical pathway, very little was known about what was happening in primary care. It had never been done before in New Zealand and hadn't really been done overseas either.'

She says there's a reasonable survival rate from lung cancer if it can be diagnosed and treated early.

'If people are diagnosed with lung cancer when it's spread from the original site, only three percent survive five years. But if they are diagnosed early with localised disease, they have a 50 percent survival rate, and if they receive surgery, that increases to over 70 percent.

'Currently, the majority of lung cancer patients present with incurable disease, so many people, including some doctors, think there's nothing that can be done. A GP would only see one new lung cancer patient every 18 months, which means they're not getting a lot of experience with the disease.'

There are a number of different research components to the project, which began in June 2009. There was an initial literature review to identify national and international barriers and recommendations for improvement, followed by a clinical audit of primary and secondary care records.

'We looked at how patients presented, what action their GPs took, when their suspicion was raised, when the patient was referred, and the various timelines to map the clinical pathway within primary and secondary care up to diagnosis,' says Dr Stevens.

There was also a national stock take of primary and secondary services that could be of benefit to people with lung cancer, even if they weren't currently being used for lung cancer patients, and interviews and focus groups with GPs and their patients, including family and whānau.

'If people are diagnosed with lung cancer when it's spread from the original site, only three percent survive five years. But if they are diagnosed early with localised disease, they have a 50 percent survival rate, and if they receive surgery, that increases to over 70 percent.'

She says while some of the barriers in the pathway aren't specific to lung cancer, many are.

'It's very difficult for patients to recognise the symptoms of lung cancer because the most common presenting symptom is a cough. About 90 percent of people who develop lung cancer are smokers and most of them have a cough.

'It's also very difficult for GPs to recognise that it's something serious because they see so many patients with respiratory problems and other respiratory symptoms.

'There's a need to increase public awareness of lung cancer symptoms so that people know they shouldn't wait if they have a persistent or changed cough. People also need to know that if it's diagnosed and treated early the results are quite good.'

Dr Stevens says about a third of patients in the study weren't aware they had something serious for a long time.

'Others were aware but were afraid to present because of the stigma of smoking, or were frightened. Some thought they might have something serious, like lung cancer, but felt nothing could be done.'

Researchers also found that GPs want respiratory upskilling sessions and to meet the local respiratory specialists and learn more about the local service so they knew exactly what to do.

She says some systems issues, particularly at the primary and secondary interface, could be improved with IT solutions to help speed up patients' journeys through the care pathway. 'Something like an e-referral system would allow standardised information to be transmitted quickly and, ultimately, allow GPs to track referrals of their patients.

'Better care coordination using secondary care coordinators, secondary care nurse coordinators and community health workers would also make a difference, particularly for Māori.'

The project is funded by the District Health Board Research Fund, a partnership between the Health Research Council of New Zealand and the 20 District Health Boards. It's a collaborative between the Northern Cancer Network, the Midland Cancer Network, Auckland District Health Board, Counties Manukau District Health Board, Lakes District Health Board (Lakes DHB), Procare Networks Auckland and Manukau, Total Healthcare Otara, Tamaki Primary Health Organisation (PHO), Rotorua Area Primary Health Service, Pinnacle Taupo, several Māori groups within the Auckland and Lakes region, the New Zealand Guidelines Group and the University of Auckland.

Findings are expected in June 2012, although some results have already been fed back into the Ministry of Health and the Cancer Networks.

Find out more.


Improved multi-disciplinary meetings delivering better cancer care

A stock take and gap analysis of cancer multi-disciplinary meetings (MDMs) across the Northern Region by the Northern Cancer Network in 2010 has since seen several improvements, including an increase in the number of patients being discussed at MDMs and shorter specialty referral times.

Multidisciplinary care is the hallmark of high-quality cancer management. MDMs – a deliberate, regular, face-to-face (or videoconference) meeting involving a range of health professionals with expertise in the diagnosis and management of cancer – are a vital component of multidisciplinary care.

Dr Geeta Gala, Public Health Physician at the Northern Cancer Network, says the aim of the research project was to ensure that cancer MDMs in the Northern Region were aligned with best practice and consistent across the region.

'We also wanted to increase the proportion of cancer patients discussed in MDMs and improve the referral process to other specialties, in line with the cancer health target.'

The project used the Central Cancer Network MDM framework as a guide to prioritise gaps in cancer MDM functioning. Gaps indentified included:

  • terms of reference and protocols for each meeting
  • lack of administrative and secretarial support, such as MDM coordinators
  • poor documentation of the MDMs' outcomes
  • limited IT support and data collection systems
  • inconsistent and delayed communication.

Dr Gala says there's increasing evidence that, for most patients, MDMs are very important to high quality and consistently coordinated cancer care, and help make the right decision for the patient.

'They also provide an opportunity for peer review and ongoing continuing medical education for senior clinicians, a learning forum for junior doctors, and provide a standard way of documenting information and decisions so they can be reviewed later.

'There is increasing evidence that, for most patients, multi-disciplinary meetings (MDMs) are very important to high quality and consistently coordinated cancer care, and help make the right decision for the patient.'

'Good documentation will improve decision-making transparency, adherence to treatment plans and also assist in clinical audits and quality improvement.'

Recommendations for improvement for each tumour stream were made to Northern Region DHBs. Dr Gala says the response from those involved in cancer treatment was very positive, and a number of improvements were made before the project ended.

'The Network has been involved in developing the lung cancer MDM template and managing the MDM database through the lung cancer tumour work, and provides quarterly reports to clinicians on patient waiting times and inequalities.

'The MDM template acts as a referral letter, so the medical oncologist and radiation oncologist can be given the referrals at the MDM. This saves time that used to be spent dictating, approving and faxing letters.'

The Network is now developing an electronic lung and bowel MDM template which will be available on the clinical portal, Concerto.

'This will better support physicians to share patient clinical and outcome information across the region.'

Find out more.


Work underway to improve supportive care for adults with cancer

An implementation plan for improving supportive care for adults with cancer has now been finalised, and work has begun to put it into practice.

Supportive care is defined as 'the essential services required to meet a person's physical, social, cultural, emotional, nutritional, information, spiritual and practical needs through their experience with cancer'.

The New Zealand Cancer Control Strategy had determined that patients' supportive care needs had to be better addressed, and established the 'Supportive Care Guidance' project in 2010.

Jo Anson, Manager of the Central Cancer Network and Chair of the working group that developed the Guidance implementation plan, says the aim was to outline best practice and provide a strategic direction for supportive care in New Zealand.

'The Guidance was informed by what was available in the international literature as well as information from earlier New Zealand research which had highlighted problems in accessing supportive care services.'

The Guidance implementation plan was developed following a stock take and gap analysis of what and how supportive care services were being delivered and how the Guidance could be put into practice.

Mrs Anson says the implementation plan provides clear, evidence-based objectives and suggests best-practice service approaches and priority actions, including developing a national supportive care framework.

'The initial focus will be on care coordination, psychosocial support and information support.

'Care coordination is about the importance of patients being well informed and their journey being well coordinated. Some cancer services have specific roles to provide that, such as breast care nurses, but coordination is generally not as well supported for patients with some other cancers or those from smaller DHBs.'

She says it's every health professional's responsibility to consider the supportive care needs of patients and their whānau, and to link them with appropriate services to address them.

'It has to be woven into every aspect of a patient's journey. There are a lot of different organisations that can help meet those supportive care needs, but appropriate referrals need to be made.

'Many supportive care services are delivered by non-government organisations, so it's very much about honouring the value they add to supportive care and incorporating and integrating that into the patient journey so that patients link with them early.

'It's every health professional's responsibility to consider the supportive care needs of patients and their whānau, and to link them with appropriate services to address them.'

'They can provide assistance with things like travel, accommodation and volunteer drivers, and develop a lot of patient information resources. However, these organisations often sit outside the standard referral pathways and are not well integrated in some areas, so we'll be trying to improve that across the board.'

Mrs Anson says there's been a lot of effort put into making sure patients know what's happening as they move between services.

'It's common for people to have treatment away from their home base, so it's about making sure they're supported with effective communication.

'Navigator-type positions have been shown to be effective, particularly for Māori, in helping patients through the treatment process. These roles are often iwi-based and not necessarily filled by health professionals. But not all DHBs have them, and we also think there is scope for an improved government sector workforce around supportive care.'

She says current access to psychosocial support varies.

'The supportive care tiered framework will mean all cancer patients will receive a baseline level of service for things like psychological support, but as their needs become more specific, they will have access to other services.

'We also want to provide a more coordinated approach to the development and distribution of patient information because currently there's the potential for a lot of duplication. We will have a co-design approach to this work that ensures patients are involved.

'Once the framework is in place, the focus over the next few years will be making sure those models of good practice are spread as widely as possible, and integrated into everyday practice and other key pieces of work, such as the 'shorter waits for cancer treatment' health target.'

While the Guidance is being implemented for cancer, Mrs Anson says it would also be relevant for other long-term conditions, such as diabetes and heart disease.

Find out more here and here.


 

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