PRIMARY CARE
AND
CARE FOR CHRONIC CANCER PATIENTS IN EUROPE
Draft of May 3, 2009
Authors:
Dr Danica Rotar-Pavlic PhD1
danica.rotar@guest.arnes.si
Dr Pim de Graaf MPH2
graaf@healthmatch.nl
Introduction
More than 1 in 3 people living in Europe will develop some form of cancer during their lifetime and
the incidence is slowly on the increase, mainly due to ageing of the population. The absolute number
of invasive tumours is increasing rapidly. Due to improved results from treatment, increasingly, cancer
is a chronic condition and also the number of people who survive cancer is growing. This results in
specific care needs and demands, such as learning how to deal with uncertainty, social consequences,
remaining physical complaints and mental problems; the need for care for survivors will increase.
Further, in many European countries cancer is becoming a frequent cause of death which calls for high
quality palliative care.
The aim of this Position Paper is to support learning in Primary Care across Europe by describing
adaptations and innovations in Primary Care, and obstacles to them, as a response to the newly
emerging needs in the area of cancer care.
The key questions are:
 What adaptations and innovations occur in primary care delivery to answer the shift in care
need of cancer patients; how do they take into account the needs of individual patients and
their domestic situation.
 What policies do health systems introduce to support and stimulate care innovations in
primary care and what are consequences for resourcing? Notably, we are interested in
considerations of scale and quality, decentralized versus centralized policy development and
resourcing, development of multidisciplinary teams and cooperation between primary and
secondary care
Methodology and process
The character of this Position Paper is exploratory. Using formal and informal literature and
information sources, the authors and contributors identified current and emerging practices and in
particular challenges, obstacles and constraints to an optimal contribution of Primary Care to cancer
care. Selected experts and practitioners contributed to the Paper, see annex XXX. In addition, during a
workshop in May 20091, an early draft of the Position Paper was discussed, which added content and
lead to revisions. While mainly drawing from North-West European sources, information and data
1
2
GP; University of Ljubljana, Medical Faculty, Department of Family Medicine; Slovenia
Health policy adviser; European Forum for Primary Care
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from Northern America and to a lesser extent Australia have been included, where they provide
interesting learning. Non-English language sources have been used summarily.
Our goal is not to provide an exhaustive documentation from all countries with or without strong
Primary Care. Rather, we aim at providing specific information and suggestions, as tools for learning
and debate by practitioners and policy makers across the continent.
Health systems across Europe differ considerably, varying between strong hospital orientation and
primary care based systems. The potential for short and long term uptake of primary care adaptations
therefore is different. However, in this Paper, no attempt has been made to analyse how cancer care in
primary care relates to health system characteristics – nor have findings and emerging practices been
qualified. As this Paper will show, cancer care in primary care is in an early development stage and,
within the scope of this Position Paper, only in a general manner good practices and policies can be
discerned.
Chapter 1
Incidence and primary care
More than 1 in 3 people living in Europe will develop some form of cancer during their lifetime. In
2004 there were an estimated 2 886 800 incident cases of cancer diagnosed and 1 711 000 people died
from cancer in Europe. The most common incident form of cancer in Europe in 2004 was lung cancer
(381 500 cases, 13.2% of all incident cases), followed by colorectal cancer (376 400, 13%) and breast
cancer (370 100, 12.8%). According to the World Cancer Report2 cancer rates could further increase
by 50% to 15 million new cases in the year 2020,.
The role and impact of primary care workers in cancer care is underestimated. GPs meet a very high
prevalence of symptoms, which might be a form of cancer. The risk posed by particular symptoms is
largely unknown, especially in unselected populations such as primary care3. Despite the high
prevalence of symptoms, the average general practitioner will only encounter on average four new
patients each year who will be diagnosed with a potentially fatal cancer, and have about 16 patients
with a diagnosed cancer under their care at any one time4.
Out of 11.108 first occurrences of haematuria in the UK General Practice Research Database (GPRD)
were associated with 472 new diagnoses of urinary tract cancers in men and 162 in women, giving
overall three year positive predictive values of 7.4% in men and 3.4% in women. After 4812 new
episodes of haemoptysis, 220 diagnoses of respiratory tract cancer were made in men and 81 in
women. After 5999 new diagnoses of dysphagia, 150 diagnoses of oesophageal cancer were made in
men and 81 in women. After 15 289 episodes of rectal bleeding, 184 diagnoses of colorectal cancer
were made in men and 154 in women. These very low predictive values increased with age and were
strikingly high, for example, in men with haemoptysis aged 75-84 and in men with dysphagia aged 65745.
A full-time GP would expect to encounter only one new patient each year with colorectal cancer.6789.
The risk of colorectal cancer in patients who present to primary care with rectal bleeding was studied
in a Dutch study. Out of 269 patients nine had cancer. The researchers found a positive predictive
value of 3.3% (95% confidence interval 1.2% to 5.4%). A Belgian study of 386 patients, 27 of whom
had cancer, found a value of 7.0% (4.6% to 10.0%); and a UK case control study of 2093 patients, 349
of whom had cancer, estimated a positive predictive value of 2.4% (1.9% to 3.2%)10.
A GP in Denmark on average sees only one new case of lung cancer per year. The core symptoms of
lung cancer, cough and dyspnoea, are, on the other hand, very common in general practice11 which
increases the risk of missing or delaying the diagnosis. Despite the fact that lung cancer has the highest
cancer incidence and mortality in the UK, an individual GP encounters only one new presentation
approximately every 8 months, so gains relatively little experience of its diagnosis12.
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In view of the low predictive value of many signs, symptoms and tests and due to the low case load in
primary care of individual cancer types, attempts are ongoing to develop strategies for GP’s to identify
cancer as early as possible.
After all, “missing” cancer during consultation in primary care may affect credibility and self
confidence of GP’s. Myths have developed around this, like the idea that 13 most cancers present to
the GP with symptoms and that cancer is only considered or diagnosed in hospitals. As a result,
secondary care data has been used to drive primary care decisions and little symptomatic diagnostic
research in primary care has been done until recently. Meanwhile, a number of studies is ongoing to
improve early diagnosis of cancer in primary care, including a focus on patient’s delay. Another
response to this diagnostic problem is considered by Hamilton et al14, who propose a study to explore
intuition of clinicians in the diagnosis of cancer.
Nursing professionals meet significant problems with respect to early discharge of cancer patient,
which is more frequent nowadays. It is evident that early discharge increases the workload of
community nurses and may increase patients' expectations of what should be available in the
postoperative period. The small and unpredictable number of patients receiving early discharge
resulted in considerable organisational difficulties for the nursing team, who were required to provide
an irregular weekend service for relatively few patients on top of their existing workload15.
The data on the survival of all cancer patients is a complex evaluation of the burden of cancer in the
observed population. It mirrors the success of primary; secondary and tertiary care programmes, from
mass screening and early detection to treatment, rehabilitation, and the many years reviewing patient
health state. The relative 5 year survival of patients during is improving for both genders in many
European countries.
Chapter 2
Screening
Europe is still characterised by unacceptable inequalities in cancer control. For this reason the EU as
well as national states have launched several projects including Cancer Screening Programmes 16
Screening means using the simplest possible tests to detect, among people with no signs or symptoms,
those that probably have a pre-invasive or an early invasive form of cancer. None of the screening
examinations offers a final diagnosis; screening examinations only detect those for which additional
diagnostic research is sensible and necessary.
In the area of early detection organised population screening programmes are recommended for
cervical cancer (pap smear) from 20 to 30 years of age, breast cancer (mammography) from 50 to 69
years of age and colorectal cancer (faecal occult blood test) from 50 to 74 years of age. These
programmes are only effective if they cover minimally 70% of the target population. These findings
are also contained in the Cancer screening recommendation approved by the European Council on 3rd
of December 200317.
For some cancers – such as breast, cervical and colorectal cancer – general practice has a critical role
to play in early detection to maximize the chance of a cure18.
Training needs of primary health care professionals related with population-based screening
programmes have been identified. Attitudes of primary health professionals regarding colorectal
cancer screening are positive. Ramos et al 19 recommend the development of a national informationeducation-communication strategy oriented to population and to professionals is essential to guarantee
the success of a colorectal cancer screening programme
Chapter 3
Survivorship, remaining physical complaints and mental problems
Little attention has been given to the GPs‫ ۥ‬potential role in relation to cancer rehabilitation process and
the concept of survivorship20. GPs often loose contact with the patients during their cancer treatment
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after referral to further diagnosing at hospital. After discharge from hospital, cancer patients often feel
“left in limbo” and do not know where to seek help2122.
Almost one-third of the patients had psychological reactions, and fear of relapse had been experienced
by half of the patients (51,8%). 4,7 % cancer patients told that the GP had been involved in supporting
the patients%9,5 ni devlovni neeb dah ffats latipsoH .tnemtaert retfa ro gnirud nerdlihc 23
‫ ۥ‬.
Up to a third of patients will develop a major depressive disorder, generalized anxiety disorder or
adjustment disorder after a cancer diagnosis, representing an increased relative risk of three times the
prevalence in the general population. At the less severe end of the morbidity spectrum, all cancer
patients experience some distress24.
Increasing numbers of patients have very prolonged periods of survival after cancer diagnosis, and die
with their illness rather than of it. Survivorship is a very positive concept, and general practice, with its
capacity for multidimensional care, is well placed to play a leading role in improving services for
people living with cancer, providing follow-up that addresses patient priorities, and developing more
personalised care for cancer survivors25.
The experiences and needs of cancer patients and their carers vary tremendously. Cancer patients have
a range of illness and social trajectories, their patterns of wellbeing fluctuate, and they often perceive a
lack of integration in the services they receive26.
Primary care health professionals should be conscious of support issues, especially concerning patients
with dependant children, elderly relatives or partners in denial, a recommendation particularly relevant
for women considered to be the family carer. Patients and their partners would benefit from open and
honest discussion of post treatment sexual difficulties and provision of dietary advice. Access to
counsellors should be available in primary care27.
Cancer survivors place extra demands on primary care services for at least a decade after diagnosis.
Increased rates of depression and pain, and particular co-morbidities according to cancer diagnosis
may account for some of this extra demand. After discharge from hospital follow up, primary care
doctors need to be aware of the special needs of long term cancer survivors28.
Chapter 4
Role and organisation of Primary Care
In this section we discuss the role and organisation of Primary Care in the treatment of cancer. While
the need for specialist care – surgery, chemotherapy and radiotherapy – is mostly unchallenged, we
consider (1) in how far Primary Care plays a role through shared care or integrated care. Further (2),
many cancer patients have co-morbidity, that may be related or unrelated to the cancer and that may
call for an active role of Primary Care. Thirdly (3), we discuss specific needs of patients for whom
cancer is a chronic disease or who survive cancer – and how Primary Care can offer adequate support
and treatment.
Generalists should serve as an “ambassador for patients in a foreign land”29 This statement from 1998
refers to patients in the hospital environment and reflects the view of many practitioners in primary
care. Currently, navigation is the preferred term in primary care. In reality, GP’s often loose contact
with the cancer patient during treatment, after referral to specialist care. Feed back to the GP during
treatment and follow up often is lacking or delayed. While this phenomenon is widespread across
Europe, some examples do exist of active involvement of GP’s and other staff in primary care, during
the treatment phase.
Introduce diagram on patient journey
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After the diagnostic phase and the initial treatment, the chronic phase develops. The initial treatment
can either have the intention to cure the patient or to offer a non-curative treatment. In the first case,
the GP needs to take into account the possibility that the cancer returns, when the patient has
complaints during the first years of the chronic phase. When treatment is non-curative, complaints or
co-morbidity may result from tumour growth or metastases. Further, patients may have pre-existing
co-morbidity or more usual complaints, like any patient. Very little is known about the type and
volume of care asked for and delivered by GP’s, for the different types of cancer and patient
characteristics, like gender and age.
While little information is available to answer these questions, in various countries, research projects
and programs are underway to explore answers. Appropriate and agreed terminology is needed to
exchange the information. Lewis et al30 offer the following terminology to describe the character of
cancer care provided by primary care and specialist care:
Sequential--patients receive virtually all of their care from specialists after diagnosis and then return to
their primary care clinician after treatment is completed.
Parallel--primary care clinicians continue to follow patients by managing non-cancer medical
problems. They may also provide encouragement and support.
Shared--primary care clinician shares role in discussing treatment alternatives, referring to new
specialists, and assessing and managing cancer symptoms, as well as taking care of medical and
emotional needs; involved in cancer treatment under the supervision of the oncologist.
Concurrent but not truly shared
Diminished/Absent
Mixed-Model
Lewis’ own survey among primary care physicians in Pennsylvania, USA, shows that many factors
influence what type of care is provided; the cancer type and stage are only two of them. Co-morbidity,
pre-existing relationship(s) with patient, family members and the specialist and preferences of patient,
caregivers, GP’s and specialist are among the other factors. Strikingly, also GP’s differ in their views
on their own role in care for cancer patients: from taking responsibility to delegating the care to
specialists.
In a small Danish surveyref, neither patients nor health professionals see the GP as having a central role
during the cancer treatment – and patients do not really miss contact with the GP in this phase. In
contrast, a Dutch surveyref2 among a small group of patients with advanced cancer showed that patients
did appreciate contact with their GP – and those who did not have this contact missed it dearly.
In Quebec, Aubin et al31 found that patients ánd GP’s expect that GP’s provide coordination of care
during the diagnostic and treatment phase, contrary to the specialists’ expectations. However,
specialists, GP’s and patients alike expected GP’s involvement in emotional support to patients and in
symptom relief.
In the Netherlands, Blaauwbroek32 found that 97% of GPs is willing to participate in shared care; 64%
consider this as their responsibility; 64% cited guidelines as a necessary support. Evaluation33 of a
shared-care model showed that 88% of survivors and 82% of FPs are satisfied.
So, while views on necessity and feasibility of greater GP involvement in chronic cancer care may
differ between and within countries, certainly there sufficient ground to search for tools to describe
and organise involvement of GP’s and other professionals in primary care.
In Scotland, Kendall34 and Murray et al35 proposed and tested a generic framework to assess and plan
the activities in General Practice for patients with cancer, see figure below. The framework was found
to be valid and useful in developing locally relevant care. All the professionals involved affirmed
validity of the five key stages and five key issues. Using the framework for individual patients helped
the practices to be reflective, innovative and responsive. This resulted in personalised, proactive care
from the cancer diagnosis onwards. Using the framework also helped practices to enhance
communication within and outside practice.
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An attempt to integrate cancer care facilities with 13 primary care clinics in Manitoba, Canada,
included the appointment of a lead Family Physician who, after focused CME, was a cancer resource
to colleagues36. Improved information from cancer registries to clinics and education of further clinic
staff were part of the program. Evaluation after 3 years did not show which interventions in particular
were effective.
Wulff et al37 observe that very little has been published on case management in cancer care. They
report on a recent project in Denmark in which nurses - case managers have been appointed in order to
help optimize the course of treatment for complicated cancer patients. Coordination with primary care
is one of the intervention elements.
In the Netherlands and Belgium, currently attempts are ongoing to use existing clinical pathways or
protocols for specialist cancer treatment for the development of primary care interventions. Results are
expected for 2010.
World wide, many experiments are ongoing to support patients at home by different forms of telecommunication and tele-medicine. In Cyprus, home care support, with emphasis on cancer care, is
being provided by tele-communication – helping to keep workload limited and patient satisfaction
high38.
The few examples above show that experiences and views on the role of primary care in cancer care
vary within and between countries. Structured and evaluated initiatives to develop integrated care for
cancer patients are only starting to be developed.
Co-morbidity
Co-morbidity can be divided in cancer-related and not-cancer related co-morbidity.
An example of cancer-related morbidity that has called for attention is arm morbidity after breast
surgery. Arm morbidity may have an important impact on ability to work - paid and unpaid - and on
social relations In Canada, Thomas-MacLean et al found an unmet need for provision of information
on symptoms and treatment options in primary care39. In Canada as well, from a survey among 570
women with breast cancer Miedema et al40 report that significant numbers of women suffered from comorbid conditions and arm morbidity. Family physicians were involved with more than half of their
breast cancer patients’ follow-up care. Disability of the shoulder and hand and the profile of moods
was not related to what type of physician – specialist or family physician - was involved in breast
cancer follow-up care.
Erectile dysfunction and/or infertility as a result of treatment of prostate cancer may occur in as many
as 75 % of patients. Smoking and hypertension may lead to erectile dysfunction as well and this seems
to be a domain where the GP should exercise skills in differential diagnosis and propose treatment
options. Patients would like to understand the impact of their cancer treatment upon their future
fertility. Fertility only becomes important beyond survival but needs to be addressed by all young
patients diagnosed with cancer41.
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Depression in cancer patients is a common feature. Nobes et al42 reported that GP’s prescribe three
times as many anti-depressants in lung cancer patients than to their controls.
Chronic cancer care and survivors
As mentioned in chapter 2, the number of patients under long lasting treatment or after treatment chronic patients or survivors - is on the rise. What questions do patients under treatment for cancer,
either with curative or non-curative intentions, ask their GP’s, nurses and social workers? Complaints
may vary, from psychological problems to physical discomfort, even years after finishing the cancer
treatment. In how far should primary care staff make the link with the previous cancer history? What
are the other demands specific for survivorship primary care is confronted with?
Definition of survival and survivors of cancer: from the time of diagnosis through the remaining years
of life (Centers for Disease Control and Lance Armstrong Foundation in the USA in 2004) or the
period following first diagnosis and treatment and prior to the development of a recurrence of cancer
or death (Institute of Medicine, USA, 2006).
Routine follow-up care comprises:
 Surveillance for recurrence
 Surveillance for late effects of treatment, like fertility issues.
 Surveillance for new primary cancer
 Psychosocial and mental health issues
 Special concerns (social/economic/occupational)
In addition, general medical and preventive care should be offered as to any other patient.
Increasingly, evidence emerges that follow up consultations over the years with oncologists are –
clinically speaking – not required. For patients these consultations may help to deal with anxiety about
cancer relapse and provide a feeling of security – “I am being looked after”. Assuming sufficient
clinical skills of the GP, this is typically a role the GP can and should play: the long term relationship
between GP and patient and the context knowledge of the GP qualifies the latter well to provide these
consultations. In a number of countries, formal follow up plans are being introduced, helping to
standardise the approach by GP’s.
Notwithstanding, evidence on health needs and health seeking behaviour of survivors of cancer is
relatively scarce. Drawing from the GPRD in the UK, Rose4344 found that survivors of breast,
colorectal and prostate cancer all consulted significantly more than their matched controls in the year
and 5-6 years following diagnosis. After 11 years, consultation rates for (ex) prostate cancer patients
had not yet converged with controls. Breast and prostate cancer survivors were more likely than their
controls to consult for depression and pain 6-18 months and 5-6 years post-diagnosis. However, only
survivors of prostate cancer consulted more than their matched controls in the year before death,
including for pain. A particular finding in the UK45 is that, compared to other chronic condition
survivors:
 Cancer survivors were as likely to claim their health in general is poor
 Similar percentages of cancer survivors had some difficulty with the range of activities
considered including activities of daily living.
 Cancer survivors were as likely to claim that they have lots of energy none or little of the time
 Similar percentages of cancer survivors had insomnia, aches and pains, burning/tingling pains,
appetite problems, urinary and bowel problems in the previous year
 Cancer survivors had similar levels of health service use.
 Overall, similar percentages of cancer survivors had many of the emotional/psychological well
being issues considered; feel anxious, nervous and on edge, difficulties doing things requiring
concentration, trouble remembering things, and worry about dying.
Although the health and well being of cancer survivors does improve with increased time since
diagnosis, it does not recover to the level of those who are not survivors or carers.
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In Canada, McBride et al46 found that 5 year survivors of childhood cancer consulted their GP’s more
than the general population.
In an international review of the follow-up of cancer patients in primary care versus secondary care
Neal et al47 found that discontinuation of hospital follow up may not lead to increased GP workload.
However, poor communication between primary and secondary care hampers primary care support. If
primary care is to expand its role this should be improved.
Are GP’s able and willing to provide care to survivors of cancer?
Del Giudice et al48 surveyed GP’s in Canada and found that GP’s are willing to assume greater
responsibility and may play a key role in providing continuous comprehensive care to cancer
survivors. Also, discharging cancer survivors from oncology programs can provide a safe costeffective method of cancer survivor follow-up.
For specific cancers, specific GP activities can be developed. An example is the GP-led follow up for
cutaneous melanoma. Delaney et al49, UK, report how GP-led melanoma follow up is feasible and is
positively viewed by patients. A robust recall system and initial GP training with regular refreshers
and effective consultant back up are conditional, however. Equally in the UK, similar conclusions
came from a survey among patients and health professionals regarding prostate cancer follow up50:
primary care can play a greater role, on the condition that training and guidelines for practitioners, a
follow up system and easy access back to secondary care are available. These conclusions should be
understood in the UK context, where primary care is following up exclusively (42.3 %) or through
shared care (39.3 %), three months after diagnosis of prostate cancer51.
In general, primary care is playing an increasing role in the follow up of cancer in the UK. As part of
the QoF, in 2003 a cancer care review was introduced to ensure contact between GP and cancer
patients between 6 weeks and 6 months from diagnosis. The National Cancer Survivorship Initiative,
2007, sponsored by the UK government, is planning to introduce a survivorship care plan for all
cancer patients.
While one of the main objectives of the health system at large and of primary care in particular is
equity, little research has been done on (in)equity in relation to primary care and cancer care. A rare
exception is McBride16 who adjusted results for socio-economic status, gender, age and residence
location and found that survivors with lower socio-economic status had increased GP visits, but
residence location did not affect those. Hølge-Hazelton52 shows how, in Denmark, young adults during
and after treatment for cancer often feel in limbo and do not recognise the GP as an important resource
or support.
Self management
Wilson53 found that there were emerging examples of self care support programmes for cancer
survivors in North America and in Australia.
The UK National Cancer Survivorship Initiative includes a component on self management. Self care
and self management are not identical however: “Self care is about individuals taking responsibility
for their own health and well being; self management is about making the most of our lives coping
with difficulties and making the most of what we have got. This includes managing or minimising the
way conditions limit our lives as well what we can do to feel happy and fulfilled to make the most of
our lives despite the condition”. Taking decisions on treatment is part of self management. Support to
self management has many components and includes patient organisations, dedicated cancer
organisations and primary care. The support provided by primary care may include information and
decision support.
Carers
While support to family caregivers in general has gained recognition over the last years, little is known
and researched on family caregivers of patients with cancer. According to Kendall54, family caregivers
may have typical trajectories of psychological, social and spiritual needs in supporting someone dying
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with cancer, in parallel with the patient. The implications for carer support from diagnosis to death and
bereavement need to be further assessed.
Hall et al55 assessed the social support needs of colo-rectal patients and their family and friends in
Aberdeen and Glasgow, Scotland. They found that patients themselves were supporting family and
friends through the time of their own diagnosis and took treatment decisions based on their family’s
ability to cope. Professional support from counsellors and dieticians was variable, pointing to a need
for improvement.
Chapter 5
Palliative Care
While demand for palliative care in the community is increasing in many countries, specific palliative
care needs of cancer patients are slowly emerging. Some symptoms may be more frequent in the final
stages of cancer than in the final stages of other diseases, like pain and cachexia. Also, in previous
years, palliative care was considered a phase in which only symptomatic treatment would be offered.
Currently however the view has emerged that treatment – like cancer treatment – often is a part of
palliative treatment. This demands the ability to offer medication and to manage the side effects of
cancer medication.
One of the greater challenges in palliative care possibly is in ensuring that communication between
oncologist and primary care – referral letter, telephone contact – is complete and timely. This should
ensure coherent information to and communication with the patient and the family and also ensure that
the GP participates in the discussion about the treatment options and intentions.
In Denmark, Warfvinge et al56 currently are trying out a tele-home care and web-based communication
system in palliative care to achieve precisely this: patient, family, GP and specialist have the same
views on what purpose and practice of medication and other elements of palliative care.
Chapter 6
National Cancer Plans
Starting with Denmark in 2000, a large number of European countries has developed National Cancer
Plans. The second Danish National cancer Plan, 2005, mentions that physicians in the primary care
should draw up local guidelines for clinical diagnosis in the primary care based on national clinical
guidelines. Hospital specialists can build directly on the initial diagnostics performed in primary care –
avoiding repetition of diagnostic procedures. Continuing medical education of general practitioners
about cancer should be ensured. Indicators and common documentation should be developed to enable
quality development of the patient pathway in the primary sector. While this Cancer Plan includes a
number of primary care measures, in April 2009, the Ministry of Health in Denmark announced that a
specific National Plan for Primary Care and Cancer will be developed. This is recognition of the
importance of primary care in cancer care. Danish cancer mortality rates are higher than in
neighbouring Norway and Sweden57, which may have triggered the extraordinary response. it is
essential to know whether Danish patients wait too long before consulting their GP and whether GPs
in Denmark are too slow in referring patients with possible cancer (
Indeed, many other National Cancer Plans include recommendations for strengthening the role of
primary care, albeit with variable emphasis and detail. While most Cancer Plans mention the role of
GP’s when it comes to screening, few are detailed on the role of primary care during the other stages
of cancer care. The German Cancer Plan from 2008 just mentions the importance of GP’s as part of
the cancer care network – whereas the second French National Plan that currently is being prepared is
much more specific on the role of GP’s – or médecins traitants.
National cancer plans are reflecting the needs of patients and the resources of specific nation. It is
useful to look at examples of cancer plans that have been developed elsewhere to get ideas about ways
to organize care for cancer patients in Europe. Some plans are truly comprehensive - they cover many
cancers and deal with everything from prevention to early detection, diagnosis and treatment, and also
issues facing people who survive cancer. Other plans start with a more limited scope58.
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The UK Cancer Plan was published in 200059, setting out organizational developments for cancer care
in the National Health Service, and creating a new system of 34 cancer networks to serve populations
of between half and three million people, so as to integrate services between hospitals and community
care.
In the draft version of Slovenian national cancer plan, special attention is given to the basic
responsibilities of primary healthcare service providers in treating cancer. The rights of cancer patients
and responsibilities of primary healthcare physicians are not specifically defined. Barriers which are
met by primary care doctors in Slovenia are:
 Education in clinical oncology during residency is insufficient (i.e., one month);
 The adopted guidelines do not define the role of primary healthcare;
 Communication between the general practitioner and the oncologist mostly takes place via
referrals;
 Full-year referrals to an oncologist diminish the role of the GP;
 The method of referring patients for rehabilitation from the primary level is notoptimal;
 Generally insufficient inclusion of the primary level in palliative care.
The distribution of cancer diagnostic and treatment services across the levels of care in a typical
middle-income country are described in Cancer Control, Knowledge into action document60 Based on
this document primary care level should provide early referral of suspicious cases, simple surgical
procedures (e.g. cryotherapy of pre-cancerous lesions of the cervix), retrieve patients who abandon
treatment, include patient support groups, make patient education and rehabilitation, provide education
and training of community caregivers including traditional healers.
Chapter 7
Data and research issues
Availability of data is a major concern in most countries, as has been shown in the chapter on National
Cancer Plans. In all European countries, minus Greece and Luxemburg, data on incidence and
prevalence of cancer are being collected, as well as mortality data. Always, these data are specified for
cancer types.
Primary Care specific cancer data are being collected in a number of countries, including UK, the
Netherlands and Canada. The General Practice Research Database in the UK is the world's largest
database of anonymised longitudinal medical records from primary care. It contains comprehensive
observational data from real-life. It covers 3 million people - 5 % of the UK population.
In the Netherlands, an automated registration network of 22 GP practices with a total population of
80.000 (RNH) currently is being used to generate data on incidence and prevalence of specific cancer
types in primary care. Another network, in which 80 practices with a total population of 300.000
participate (LINH) simultaneously is being used to collect information on cancer care provided in
general practice. With an interval of approximately 10 years, national surveys among a sample of GP
practices is being done, generating huge amount of data – among them on cancer care. While these
data are retrospective, they do have their limitations, however.
In Canada, with provincial responsibility for health, there are several national registries - Cancer
Registry, Cancer Treatment (radiotherapy, chemotherapy), Cancer Screening Programs, Oncology
visits - and a large number of different provincial databases related to health, education, employment
and others, and census registries. Complex data combination is required to extract information that
helps to understand the history of cancer patients and primary care activities and results. The example
of colo-rectal cancer in Manitoba shows that this is not impossible, however61.
In Denmark, there are 9 accredited national cancer databases (bladder, prostate, gynaecological, upper
alimentary, colo-rectal, haematological, breast, lung, head-neck) but the data/registration are not
coordinated with the National Cancer Registry. There are no systematic data from primary care.
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The above exemplifies the need – and difficulty - to use the data for analysis and monitoring of
interventions, including in primary care.
Due to the nature of cancer and cancer care, longitudinal studies are indispensible and funding for 5
years or longer are required. However, in some countries, long term funding and grants are difficult to
get.
At the European level, a number of projects is ongoing, supported by grants from the EU Public
Health programme. Essentially, these projects intend to generate standardised information related to
cancer and cancer care. They do not however, as yet, provide specific data on cancer in primary
care.Two of the major ones are:
The European Cancer Health Indicator Project – Eurochip62 aims is to improve information and
knowledge on cancer, with a focus on fighting inequalities in cancer. It has developed, in 3 stages.
First, a general set of indicators was developed. Subsequently, it suggested cancer control actions in 24
European countries by developing indicators for care and treatment, cervical cancer and registration.
Finally it works on cancer rehabilitation and costs.
EUROCARE 63 is the largest population-based cooperative study on survival of patients with cancer.
The EUROCARE project aims to regularly monitor, analyse, and explain survival trends and betweencountry differences in survival.
Chapter 8
Conclusions and recommendations
Primary care and cancer care is a relatively new domain of concern. Within a number of countries,
data are being generated and intervention projects are developed. However, international comparison
can only be limited at this point in time, in view of the scarcity of data and limited opportunities for
exchange. The International Primary Care and Cancer Research group, established in 2008, is a
promising forum for exchange and learning and may lead to international collaborative projects. This
Paper draws heavily on its first two conferences. Being renamed CA-PRI, the group plans its third
annual conference in Canada in May 2010.
For this Paper, little has been identified in terms of experiences with specific cancer care needs and
demands, such as learning how to deal with uncertainty, social consequences, remaining physical
complaints and mental problems – topics that were mentioned in the introduction. However, the basis
is being laid for collaborative work and research to develop good practices and policies in these
domains.
While there is a clear east-west gradient in incidence and survival rates of cancer in Europe – with
highest incidence and lowest survival in the east – resources available for research and improvements
in primary care are concentrated in Western Europe and Northern America. The proportion of
publications and attendants to international events from Western Europe are testimony to this. Support
to and inclusion of practitioners, policy makers and researchers from Central and Eastern European
countries in international exchange would help to generate a more effective response by primary care
to the increasing need of the population. In addition, across the continent, countries with a lesser
primary care orientation would benefit from international support as well. While the language barriers
are real, they can be overcome and this should help to extend the efforts beyond North-Western
Europe and Northern America to the whole of Europe.
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Peter R. Lewis, M.D., Alan M. Adelman, M.D., M.S., Kelly R. Leite, D.O., and Marie A. Graybill, R.N.
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The role of family physicians in the follow-up of patients with lung cancer: do family physicians, specialists
and patients agree? Aubin Michèle 1, Vézina Lucie1, Verreault René2, Fillion Lise3, Hudon Eveline4, Lehmann
François4, Bergeron Rénald1, Leduc Yvan1, Reinharz Daniel2, Misson Lucie1, Marleau Danielle4.
Page 12 of 14
Authors’ affiliations: 1 Department of Family Medicine and Emergency Medicine, Laval University 2
Department of Social and Preventive Medicine, Laval University 3 Faculty of Nursing, Laval University 4
Department of Family Medicine, University of Montreal. **
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Blaauwbroek, Ria et al. (2007) The willingness of general practitioners to be involved in the follow-up of
adult survivors of childhood cancer J Cancer Surviv 1:292-7
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Blaauwbroek, Ria et al. (2008) Shared care by paediatric oncologists and family doctors for long-term followup of adult childhood cancer survivors: a pilot study Lancet Oncol 9:232-8
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How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and
carers. Kendall, Marilyn; Boyd, Kirsty; Campbell, Christine; Cormie, Paul; Fife, Shirley; Thomas, Keri; Weller,
David; Murray, Scott A; Family Practice. 23(6):644-650, December 2006
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Scott A Murray, Kirsty Boyd, Christine Campbell, Paul Cormie, Keri Thomas, David Weller and Marilyn
Kendall; Primary Palliative Care Research Group, Division of Community Health Sciences; General Practice
http://www.homepages.ed.ac.uk/smurray1/ Family Practice 2008(in press)
36
37
Case management used to optimize cancer care pathways: A systematic review
Christian N Wulff1,2, Marianne Thygesen3, Jens Søndergaard4 and Peter Vedsted1 ; 1The Research Unit for
General Practice in Aarhus, University of Aarhus; 2Surgical Department P, Aarhus University Hospital; 3Institute
of Clinical Research, Faculty of Health Science, University of Southern Denmark; 4The Research Unit for
General Practice, Institute for Public Health, University of Southern Denmark; Denmark
BMC Health Services Research 2008, 8:227doi:10.1186/1472-6963-8-227.
38
Andreas Pitsillides, George Samaras & Marios Dikaiakos; Department of Computer Science; University of
Cyprus. DITIS: Collaborative Virtual Medical team for home healthcare of cancer patients (unpublished).
39
Roanne Thomas-MacLean, University of Saskatchewan, et al; poster session; first meeting of the International
Primary Care and Cancer Research group, Edinburgh, 2008
40
Are family physicians involved in the follow-up care of women who are being treated for breast cancer?
Baukje (Bo) Miedema, Dalhousie University Family Medicine Teaching Unit, Fredericton, New Brusnwick
Roanne Thomas-MacLean (Saskatoon, SK), Sue Tatemichi (Fredericton, NB), Anna Towers (Montreal, PQ)
Thomas Hack (Winnipeg, MB), Winkle Kwan (Surrey, BC), Andrea Tilley (Saint John,NB). *
41
Wilkes S, Coulson S, Stewart J, Crosland A, Murdoch A, Rubin G. Experience of Fertility Preservation for
Cancer Survivors.**
42
Sarah Nobes, John Belcher, Richard D Neal; Department of Primary Care and Public Health, North Wales
Clinical School, School of Medicine, Cardiff University. **
43
Care of long term adult cancer survivors in primary care- a UK perspective;
Peter Rose; *
44
Care of long term adult cancer survivors in primary care- a matched cohort analysis;
P W Rose, N F Khan, E Watson*, R Perera, A Ward, J Austoker, D Forman**, D Mant. University of Oxford,
*Brookes University, Oxford, ** University of Leeds, UK; **
45
Health and Well Being of Cancer Survivors, Macmillan Cancer Support, UK, 2008,
46
Treatment-related Utilization of Physician Services among Survivors of Childhood and Young Adult Cancer
in British Columbia Canada: A Childhood/ Adolescent/ Young Adult Cancer Survivor (CAYACS) Program
Report; Mary L McBride1, Maria F Lorenzi1, Jacqueline Page1, Sam Sheps2, John Spinelli1, Anne-Marie
Broemeling3, Karen Goddard4, Sheila Pritchard5, Paul Rogers5, for the CAYACS Research Group. 1Cancer
Control Research Program, British Columbia Cancer Agency, Vancouver, 2School of Population and Public
Health, University of British Columbia, Vancouver,. 3Interior Health Authority, Kelowna, 4Division of
Radiation Oncology, BC Cancer Agency, Vancouver,. 5Division of Hematology/ Oncology, BC Children’s
Hospital, Vancouver, British Columbia, Canada. **
47
Follow-up of cancer patients in primary care versus secondary care: systematic review
Richard Neal,1 Ruth Lewis,1 Nefyn Williams,1 Barbara France,1 Clare Wilkinson,1 Maggie Hendry,1 Daphne
Russell,2 Ian Russell,2 Dyffrig Hughes,2 Nick Stuart,2 David Weller3; **
1. Cardiff University, North Wales Clinical School, Wrexham 2. Bangor University, 3. University of Edinburgh
48
PCP Willingness to Provide Follow-Up Care to Adult Cancer Survivors; Del Giudice ME, Verma S, Piliotis E,
Harvey BJ, Grunfeld E Sunnybrook Health Sciences Centre, University of Toronto, Ontario, Cancer Care Nova
Scotia, Halifax. **
49
GP-led follow-up for cutaneous melanoma: feelings, experiences and perspective of patients and GPs. Peter
Murchie, Elizabeth Delaney, Neil C Campbell, Philip C Hannaford; Centre of Academic Primary Care,
University of Aberdeen, UK. **
Page 13 of 14
50
Follow up care for men with prostate cancer: the views of health professionals and patients Eila Watson 1,
Rosaleen O’Brien 2 and Peter Rose 3 on behalf of the Prostate Cancer Follow Up Group (1) School of Health
and Social Care, Oxford Brookes University (2) Department of Primary Health Care, University of Oxford
**.
51
How are men with prostate cancer followed-up in the UK? Analysis of data from primary care casenotes, and
the general practice research database (GPRD). Richard D Neal, Marketa Keller, John Belcher, Clare Wilkinson
Department of Primary Care & Public Health, North Wales Clinical School, Cardiff University, Wales (on
behalf of the prostate cancer primary care follow-up group).
52
Professional and educational challenges for GPs in cancer care of young adults. Bibi Hølge-Hazelton, PhD,
Ass Prof .Research Unit for General Practice in Copenhagen and School of Education, University of Aarhus,
Denmark
53
Wilson P.M.(2008) The UK Expert Patients Programme: Lessons learned and implications for cancer
survivors’ self care support programmes. Journal of Cancer Survivorship, 2; 45-52
54
Do family caregivers have typical trajectories of psychological, social and spiritual needs in supporting
someone dying of cancer: serial qualitative interviews with patients with lung cancer and their family carers. Dr
Marilyn Kendall, Professor Scott Murray, University of Edinburgh, **
55
Issues surrounding the social support needs of colo-rectal cancer patients, and their family and friends: a
secondary qualitative analysis Susan Hall, Neil Campbell, Nicola Gray Centre of Academic Primary Care,
University of Aberdeen; Sue Ziebland Department of Primary Health Care, University of Oxford. **
56
Tele-home-care and web-based communication in palliative care Jens Warfvinge1,2, Mette Asbjoern
Neergaard2, Trine Brogaard2, Niels Ejskjaer3, Anders Bonde Jensen 1; 1: Department of Oncology and the
Specialist Palliative Care Team, Aarhus University Hospital, 2: Research Unit for General Practice, Aarhus
University 3: Department of Endocrinology, Aarhus University Hospital, Denmark. **
57
http://www.sst.dk/publ/Publ2004/The_Nat_Cancer_Plan_02.pdf.
58
http://www.uicc.org/index.php?option=com_content&task=view&id=16086&Itemid=465
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UK Department of Health: The NHS Cancer Plan: a plan for investment, a plan for reform. London,
Department of Health; 2000.
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http://www.who.int/cancer/modules/FINAL_Module_4.pdf
61
Using Administrative Data to Describe the Organization and Quality of Colorectal Cancer Follow-up Care in
Manitoba; Dr. Bosu Seo, University of Manitoba Dr. Jeff Sisler, University of Manitoba and CancerCare
Manitoba Dr. Alan Katz, University of Manitoba and Manitoba Centre for Health policy Ms. Emma Shu,
CancerCare Manitoba. **
62
63
http://www.tumori.net/eurochip/
http://www.eurocare.it/
*
Presented at the first meeting of the International Primary Care and Cancer Research group, Edinburgh
2008
**
Presented at second meeting of the International Primary Care and Cancer Research group,
Copenhagen, April 23-24, 2009
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