Primary care and care for chronic cancer patients in Europe ...

Quality in Primary Care 2009;17:431–43

# 2009 European Forum for Primary Care

International exchange

Primary care and care for chronic cancer patients in Europe: position paper of the European Forum for Primary Care Danica Rotar Pavlicˇ MD PhD Assistant Teacher, University of Ljubljana, Department of Family Medicine, Slovenia

Pim de Graaf MD MPH Member of Executive Committee, Consultant, Health and Social Policy, European Forum for Primary Care, The Netherlands

Frank Buntinx MD PhD Professor, Department of General Practice, Universities of Leuven, Belgium, and Maastricht, The Netherlands

Christos Lionis MD PhD Associate Professor, Head of Clinic of Social and Family Medicine, Head of Department of Social Medicine, Faculty of Medicine, University of Crete, Greece

Introduction More than one in three people living in Europe will develop some form of cancer during their lifetime, and the incidence is slowly on the increase, mainly due to population ageing. The fact that the prevalence of cancer (i.e. also comprising ex-cancer) is rising by 3– 5% annually does not necessarily imply that the cancer problem is worsening. On the contrary, given the downward trend in cancer mortality for most major cancer sites in most countries the reverse is happening.1 Due to improved treatment results, cancer is increasingly a chronic condition. Although ‘chronic cancer’ is not a commonly used term, in this paper we propose the definition of chronic cancer as cancer that lasts at least six months. This chronicity 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. Furthermore, in many European countries cancer is becoming the most frequent cause of death, which calls for high quality palliative care services at a time when relatives are reporting unsatisfactory experiences with palliative care due to organisational and cultural problems.2 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 cancer care.

The key questions are: .

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What adaptations and innovations occur in primary care delivery to answer the shift in cancer patients’ care needs; how do they take into account the needs of individual patients and their domestic situations? What policies do health systems introduce to support and stimulate care innovations in primary care, and what are the economic consequences of resourcing? (We are particularly interested in considerations of scale and quality, decentralised versus centralised policy development, development of multidisciplinary teams and co-operation between primary and secondary care.) What additional questions should the research agenda include?

Methodology and process This position paper is exploratory in character. Selected experts and practitioners contributed to it (see Appendix). In addition, during a workshop in May 2009 an early draft of the paper was discussed, which led to content additions and revisions.3 The European Forum for Primary Care Executive Committee endorsed the final version, in accordance with its procedures.

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D Rotar Pavlicˇ, P de Graaf, F Buntinx et al

The goal of this paper is not to provide exhaustive documentation of experiences and concerns gained from all European countries with or without a strong primary care capacity. It mainly aims to provide specific information and suggestions as tools for learning and debate by practitioners and policymakers 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 is therefore different. However, this paper makes no attempt to analyse how cancer care in primary care relates to health system characteristics – nor have findings and emerging practices been quantified. As this paper shows, cancer care in primary care is in a developmental stage. Some good practices and policies are appearing as solutions to the current morbidity pattern.

Incidence of cancer in primary care and the diagnostic challenge In 2004 in Europe, nearly 2 900 000 incidences of cancer were diagnosed and more than 1 700 000 people died from cancer. The most common form of cancer in Europe in 2004 was lung cancer (341 800 deaths, 13.3% of all incidences), followed by colorectal cancer (203 700 deaths, 13.2% of all incidences) and breast cancer (129 000 deaths, 12.8% of all incidences).4 According to the World Cancer Report of 20035 cancer incidence rates could further increase by 50% to 15 million new cases in 2020. Most early cancer symptoms are not specific to cancer and general practitioners (GPs) encounter a very high prevalence of symptoms that may or may not be early manifestations of cancer. The risk associated with particular symptoms is largely unknown, especially in unselected populations such as those in primary care.6 In view of the relatively unselected nature of the populations encountered by general practitioners, it is clear that the results of diagnostic research undertaken in other settings may be inapplicable.7 This is illustrated by the following examples. Of the 11 108 first occurrences of haematuria registered in the UK General Practice Research Database, only 472 resulted in a new diagnosis of urinary tract cancer in men and 162 in women, giving overall three-year positive predictive values of 7.4% in men and 3.4% in women. Following 4 812 new episodes of haemoptysis, 220 diagnoses of respiratory tract cancer were made in men and 81 in women. Following 5 999 new diagnoses of dysphagia, 150 diagnoses of oesophageal cancer were made in men and 81 in women. Following 15 289 episodes of rectal bleeding, 184 diagnoses of colorectal cancer were made in men and 154 in women.

These very low predictive values increase with age. For example, in men with haemoptysis aged 75–84, 17.1% were later diagnosed with respiratory tract cancer; in men with dysphagia aged 65–74, 9.0% were diagnosed with oesophageal cancer.8 In a Belgian study of 386 patients with rectal bleeding,9 27 had rectal cancer, giving a predictive value of rectal bleeding of 7%. Du Toit et al report on a 10-year prospective study that confirms the importance of rectal bleeding as an indicative symptom for colorectal cancer.10 The study found that about one in ten patients with new onset rectal bleeding had cancer.10 Thus, despite the high prevalence of symptoms10,11 a full-time GP would expect to encounter only one new patient each year with colorectal cancer.12–14 A GP in Denmark on average sees only one new case of lung cancer per year.15 In the UK, an individual GP encounters only one new lung cancer presentation approximately every eight months.16 The core symptoms of lung cancer – cough and dyspnoea – are, on the other hand, very common in general practice,17 which increases the risk of missing or delaying the diagnosis, thus limiting the benefit of the primary care intervention. In view of the low predictive value of many signs, symptoms and tests, and due to the low case-load of individual cancer types in primary care, attempts are ongoing to develop strategies to enable GPs to identify cancer as early as possible. After all, ‘missing’ cancer during consultations in primary care affects patients and may affect GPs’ credibility and self-confidence. Myths have developed around this, such as the idea that most cancer symptoms are ignored by the GP and that cancer is only considered or diagnosed in hospitals.18 The need for early diagnosis needs to be balanced with the need to avoid excessive diagnostic procedures (exposing patients to the risk of tests, false positives and their subsequent interventions) and the risk of affecting the quality of life due to unnecessary fears and suffering. Presently, the data used to drive primary care decisions mainly come from secondary care, and little symptomatic diagnostic research in primary care has been done until recently. Meanwhile, a number of studies aiming to improve early cancer diagnosis in primary care are ongoing, including a focus on patient delay. Another response to this diagnostic problem is considered by Hamilton et al,19 who propose a study exploring clinician intuition in cancer diagnosis.

Cancer and older patients Risk of cancer increases with age and it is estimated that one-third of septuagenarians will develop a new cancer during the remainder of their lives. Information on cancer in elderly patients is scant at the

Primary care and care for chronic cancer patients in Europe

global level and there is far less information for the developing world.20 Older people frequently live alone, their social network is restricted, and compared to younger people they tend to have more difficulties when dealing with the practicalities of treatment. In addition, some evidence suggests that there are age-related disparities disadvantaging the elderly in terms of access to health care and the delivery of certain diagnostic and therapeutic interventions.20–22 Many clinical trials have upper age limits, meaning there is little information on how treatment affects older people. The survival of European cancer patients varies markedly by country, region, age and sex. The relative excess risk of death is 28% higher in eastern Europe than central Europe; it is much higher for patients of 55–99 years old than for those who are 15–54 years old, and male cancer patients have a significantly higher risk of dying than women.23 This variation, especially in terms of the care of elderly and the importance of caregiving, is explored in detail.24

Communication Communication is a cornerstone of primary care, and communication is increasingly recognised as a critically important element in the cancer care process.25 Consensus has emerged on the responsibility of the GP to impart factual, reasonable and appropriate information so that the patient and his family are fully informed and enabled to make reasonable decisions relative to treatment options. Physicians deal with patients and their cancer caregivers in all the different cancer stages, from early diagnosis to end of life. The emotional reaction to each of these stages can differ significantly from patient to patient, and doctors may be unsure of what attitude and reaction is appropriate and helpful for patients and their caregivers. Communication skills are part of the medical curriculum in most European countries, but not in all of them, and there would be much to gain from modernising undergraduate and graduate training in several countries. One element of such training is learning to recognise specific patient needs. Patient preferences for communication during diagnostic consultation are not always consistent with published guidelines. Guidelines for clinicians should take into account patient opinion, derived from patient based data, rather than be limited only to clinical opinion. Guidelines concerning communication at the time of diagnosis also need to address discussions concerning the implications of the diagnosis and about making treatment decisions. In a study by Butow et al,26 the type of cancer did not significantly influence patient preferences in

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communication strategy. The patient’s psychological adjustment was related to the patient’s rating of the quality of the doctor–patient discussion of treatment options, but was not related to the cancer diagnosis and its implications. Patients who wanted more emotional support at the time of diagnosis subsequently experienced poorer psychological adjustment. In a study by Randall and Wearn,27 patients placed importance on not being rushed during the bad news consultation and on the doctor’s manner. Receiving bad news was the first step on a journey, not an isolated incident. Patients had strong preferences for continuity and use of certain language. Displays of empathy were important, but must be genuine. Patients wanted to know about likely emotional reactions and future support, and found it valuable to bring a companion. In most cases, it is a specialist that informs the patient of a cancer diagnosis, but in a minority of cases it is the GP. In some cases, the GP is also consulted by the specialist on the best approach to passing the message and to discussing follow-up. Practitioners should consider what approach to giving the cancer diagnosis will be the best for each patient and must give the patient enough time for questions and discussion. In addition, the time and place for giving the diagnosis is important. Discussions relying on support from family members, friends, colleagues and neighbours (the social network) are essential. In many cases, the patient has the emotional burden of supporting family members through the time of his or her own diagnosis and treatment, and protecting children and elderly frail relatives – but this usually goes unrecognised.28 In the UK, Kimberlin et al29 interviewed cancer patients and their caregivers. Seven themes emerged suggesting improvements that are needed in the communication process. These include: 1) improving the process of information exchange; 2) increasing active participation of patients and caregivers in the care process; 3) improving provider relationship-building skills; 4) overcoming time barriers; 5) addressing fears regarding use of pain management medications; 6) fostering appropriate involvement of family and caregivers in the communication process and 7) improving co-ordination of care among providers.

Role and organisation of primary care This section further discusses the role and organisation of primary care in cancer treatment. We consider three issues: first, how much of a role primary care plays in shared care or integrated care; second, the fact that many cancer patients have comorbidity that

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may be related or unrelated to the cancer and may call for an active role from primary care; and, third, the specific needs of patients for whom cancer is a chronic disease or that survive cancer, and how primary care can offer adequate support and treatment.

illustrates the attempts to optimise approaches and the required skill mix.

The role of primary care in providing integrated care or shared care

Obviously, the interface between primary and secondary care is strongly determined by the type of health system, varying between systems with a strong hospital orientation and those that are primary care based. This position paper does not aspire to offer a systematic analysis of the strengths and weaknesses of either or both systems. However, in all systems the following issues are a matter of concern to those that intend to offer the best and continuous care to their patients:

A GP should serve as an ‘ambassador for patients in a foreign land.’30 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. As mentioned above, in reality GPs often lose contact with the cancer patient during treatment, after referral to specialist care. Feedback for the GP during treatment and follow-up is often lacking or delayed.31 Although this phenomenon is widespread across Europe, active involvement of GPs and other staff in primary care during the treatment phase is increasingly the subject of research and experimentation. Wulff et al32 observe that very little has been published on case management in cancer care. They report on a recent project in Denmark in which nurses have been appointed as case managers in order to help optimise the course of treatment for complicated cancer cases. Co-ordination with primary care is one of the intervention elements. In contrast, a Dutch survey33 among a small group of patients with advanced cancer showed that patients did appreciate contact with their GP – and those that did not have this contact greatly missed it. Indeed, Blaauwbroek33 found that 97% of GPs are willing to participate in shared care; 64% consider this their responsibility and 64% cited guidelines as a necessary support. Evaluation34 of a shared care model showed satisfaction in 88% of survivors and 82% of GPs. However, very little is known about the actual type and volume of care asked of and delivered by GPs according to different types of cancer and patient characteristics such as gender and age. Such a study is now under way in the Netherlands. In addition, in the Netherlands and Belgium efforts are being made to use existing clinical pathways or protocols for specialist cancer treatment to develop primary care interventions. Findings are expected in 2010. In Quebec, Aubin et al35 found that patients and GPs expect GPs to provide co-ordination of care during the diagnostic and treatment phase, contrary to the specialists’ expectations. However, specialists, GPs and patients alike expected GP involvement in emotional support of patients and symptom relief. This short overview shows how diverse the involvement of primary care is in cancer management. It also

Relationship of primary care to secondary care

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need for quick and easy referral opportunities for possible cancer patients the involvement of the GP in important treatment decisions, as well as when the patient is hospitalised inclusion of the GP in the care team during chemotherapy or radiotherapy, thus preventing the relationship between the GP and patients from fading optimising home based care by ensuring availability of adequately trained nurses and other staff, in order to limit hospitalisation – as far as the patient’s condition allows for this. In a number of countries, specialised nursing care at home is provided by the hospital team, in which case coordination with primary care staff is an obvious focus of attention.

Early discharge of cancer patients is increasingly frequent nowadays – although still a rare event for a primary care team. The unexpected and early discharge of a patient sometimes results in considerable organisational difficulties: in several countries across Europe, the primary care team is expected to provide irregular weekend services for relatively few patients on top of their existing workload.36 In other countries, separate home care services operate on a scale that allows for adequate resourcing. Networking with secondary care physicians, with well co-ordinated actions, predefined flows and established clinical protocols, is a challenging issue that should be widely discussed, especially when continuity of care is a central issue within the cancer patient’s care. 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 beginning to be developed. The section on survivorship further discusses relations between primary and other care levels. The frame of


ten targets for quality improvement at the interface between general practice/family medicine and secondary care, as proposed by EQuiP some years ago,37 could be used as a base when cancer patient care is discussed.

Cancer and comorbidity Comorbidity can be divided into cancer related and non-cancer related. Another distinction is between comorbidity that exists at diagnosis and subsequent morbidity after diagnosis and the start of treatment. An example of cancer-related morbidity that has called for attention is arm morbidity after breast surgery. Arm morbidity may significantly affect both the ability to work (paid and unpaid) and social relations. In Canada, Thomas-MacLean et al38 found an unmet need for provision of information on symptoms and treatment options in primary care. Also in Canada, a survey of 570 women with breast cancer by Miedema et al39 reported that significant numbers of women suffered from comorbid conditions and arm morbidity. Family physicians were involved in more than half of their breast cancer patients’ follow-up care. Disability of the shoulder and hand and mood profiles were not related to what type of physician (specialist or family physician) was involved in breast cancer follow-up care. A second example of cancer-related comorbidity is erectile dysfunction and/or infertility, which may occur in as many as 75% of patients as a result of treatment of prostate cancer. Patients want to understand the impact of their cancer treatment on their future fertility. Fertility only becomes important beyond survival, but it needs to be addressed by GPs for all young patients diagnosed with cancer.40 At the less severe end of the morbidity spectrum, all cancer patients experience some distress.41 Nobes et al42 reported that GPs in the UK prescribe three times as many antidepressants to lung cancer patients as to their controls. Further studies are needed to determine the accuracy of the diagnosis of depression, and the effectiveness and cost-effectiveness of antidepressants in lung cancer patients. Also, the role of psychologists and nurses specialising in mental health support needs to be further explored. Comorbidity not related to the cancer itself has largely been ignored in the literature.43 As yet unpublished data in Belgium and The Netherlands recently confirmed that comorbidity rates in cancer patients are high. This could be expected because cancer is largely a disease of older people. However, comorbidity rates are similar to the rates in non-cancer patients of the same age, apart from a small number of diseases such as heart failure, deep venous thrombosis, lung embolism and stroke. In a study by Ogle conducted in

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Detroit, the overall prevalence of chronic disease comorbidity among cancer patients was 68.7%. Of these, 36.1% had a comorbid chronic disease and 32.6% had two or more comorbid chronic conditions. The prevalence of both cardiovascular and cerebrovascular diseases increased with advancing age at cancer diagnosis.44 The natural history of cancer may affect both the severity and outcomes of other chronic illnesses, and it can be expected to coexist commonly with other chronic illnesses. Cancer is an exclusion criterion from clinical trials on other diseases. That comorbidity may affect clinical decisions is shown by a study carried out in The Netherlands. Independent prognostic effects of age and comorbidity were evaluated in a cohort of new breast cancer patients in the southern Netherlands. The prevalence of comorbidity increased from 9% for patients under 50 to 56% for patients over 80. The most frequent conditions were cardiovascular disease (7%), diabetes mellitus (7%) and previous cancer (6%). In the presence of comorbidity, fewer patients received radiotherapy (51% vs 66%) and fewer patients that underwent breast conserving surgery also had axillary dissection.45 The challenge for primary care of patients with comorbidity unrelated to cancer is first to establish this relationship and then to initiate treatment for the comorbid condition and to co-ordinate this with the cancer treatment. This may require an active attitude on the part of the primary care staff in seeking to exchange information and discuss treatment options with secondary care staff.

Chronic cancer care and survivorship The number of cancer patients that are cured or undergoing long-term treatment (i.e. the survivors) is increasing, and patients more often 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 survivors.46 However, the experiences and needs of cancer patients and their caregivers vary tremendously.47 Cancer patients have a range of illnesses and social trajectories, their patterns of wellbeing fluctuate, and they often perceive a lack of integration in the services they receive. A recent study in Belgium48 examined problems and questions presented by cancer patients and their carers to volunteers in a free access walk-in facility. Most frequently patients felt the need to talk about presenting worries to people able to actively

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listen. Second, however, patients asked questions about diagnosis, treatment and consequences of their disease. A particular finding in the UK49 is that, compared to other chronic condition survivors: . . . .

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cancer survivors were as likely to claim their health in general is poor similar percentages of cancer survivors had some difficulty with daily activities cancer survivors were as likely to claim that they were rarely if ever energetic similar percentages of cancer survivors had had insomnia, aches and pains, burning/tingling pains, appetite problems and 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 and wellbeing issues considered; feeling anxious, nervous, and on edge, difficulties doing things requiring concentration, trouble remembering things and worry about dying.

Among other things, this is the result of the lack of attention given to the GP’s potential role in relation to the concept of survivorship.50 Opinions differ as to what extent GPs have primary responsibility for accompanying the patient: should they remain at the patient’s side from the first contact to the outcome of the cancer journey? GPs often lose contact with patients during their cancer treatment after referral to hospital for further diagnostics. After discharge from hospital, cancer patients often feel ‘left in limbo’ and do not know where to seek help.51,52 Almost one-third of patients had psychological reactions, and fear of relapse had been experienced by half of patients (51.8%). In Denmark, 4.7% of cancer patients said that their GPs had been involved in supporting patients’ children during or after treatment. Hospital staff had been involved in 5.9% of cases.53 GPs have to co-operate effectively with the hospital physicians. While networking is a challenge in contemporary Europe, some positive experiences in developing training activities have been reported in the literature.54 Issues of co-operation with social workers, psychologists and other therapists should be also explored. Cancer survivors place extra demands on primary care services for at least a decade after diagnosis. Increased rates of depression and pain, and particular comorbidities 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 survivors.55 Data on the long-term use of health care and specific needs of (ex-) cancer patients are scant. A study on this matter is currently under way in The Netherlands.

Routine follow-up in primary care comprises: . .

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monitoring for recurrence monitoring for late effects of treatment, such as fertility issues, heart failure, and cognitive impairment monitoring for new primary cancer psychosocial and mental health issues, especially related to dealing with the uncertainties of survivor status 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 them deal with anxiety about cancer relapse and provide a feeling of security – the idea that ‘I am being looked after’. Assuming that the GP has sufficient clinical skills, this is typically a role the GP can and should play: the long-term relationship between GP and patient and the GP’s context knowledge makes the GP well qualified to provide these consultations. In some countries, formal follow-up plans are being introduced, helping to standardise the approach by GPs.56 In an international review of the follow-up of cancer patients in primary care versus secondary care, Neal et al57 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 GPs able and willing to provide care to cancer survivors? Del Giudice et al58 surveyed GPs in Canada and found that GPs are willing to assume greater responsibility and may play a key role in providing continuous comprehensive care to cancer survivors. In addition, discharging cancer survivors from oncology programmes can provide a safe, cost-effective 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. In the UK, Murchie et al59 report how GP-led melanoma follow-up is feasible and is positively viewed by patients. This is conditional, however, on a robust recall system and initial GP training with regular refreshers and effective consultant back up. Also in the UK, similar conclusions came from a survey among patients and health professionals regarding prostate cancer follow-up:60 primary care can play a greater role, on 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 follows up exclusively (42.3%) or through shared care (39.3%) three months after diagnosis of prostate cancer.60 Although one of the main objectives of the health system in general, and of primary care in particular, is equity, little research has been done on (in)equity in relation to primary care and cancer care. HølgeHazelton et al 61 shows how young adults in Denmark during and after treatment for cancer do not recognise the GP as an important resource or support.

Returning to work The quality of life after cancer experience is becoming an increasingly important issue and return to work is one aspect of this. For most survivors, work is a financial and emotional necessity, to help them keep their self-esteem and social support; however, work is also a source of stress and can adversely affect health. According to American authors, up to 65% of cancer survivors remain professionally active, but as many as 75% of cancer survivors have to change their working status due to consequences of the disease. In Europe there are no data on how many cancer patients return to work and how easy they find it to do so.62 The return to work for women with breast cancer can be part of a transition to a state of wellbeing, even though women may find that returning to the labour market is not particularly easy, both due to feelings of tiredness that they may not have had before, and which they may try to conceal, and to anxiety about oncological risk, which remains a constant factor.63 A meta-analysis of 20 366 cancer survivors and 157 603 healthy control participants included 16 studies from the USA, 15 from Europe and five from other countries.46 Overall, cancer survivors were more likely than healthy control participants to be unemployed (33.8% vs 15.2%). Unemployment was higher in breast cancer survivors compared with control participants (35.6% vs 31.7%), as well as in survivors of gastrointestinal cancers (48.8% vs 33.4%) and cancers of the female reproductive organs (49.1% vs 38.3%). Unemployment rates were not significantly higher for survivors of blood cancers compared with controls (30.6% vs 23.7%), prostate cancer (39.4% vs 27.1%) or testicular cancer (18.5% vs 18.1%). For survivors in the USA, the unemployment risk was 1.5 times higher than for survivors in Europe.

Self-care and self-management Globally, the enablement of self-care is increasingly being recognised as an essential component of chronic disease management. Within the UK, a key self-care policy initiative is the Expert Patients Programme. Developed from the Chronic Disease Self-Management Programme, this is a six-week self-management

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education programme for people with different chronic diseases, facilitated by lay volunteers.64 In a case of a cancer journey, many people report continued problems, which can have an impact on daily life, following completion of active treatment for cancer, and people may find it difficult to resume ‘normal life’. A cross-sectional qualitative study explored the strategies people use to manage problems experienced six to 12 months after active treatment has ended. Participants were often proactive in securing the support they required. Many participants made connections with others in a similar situation and shared knowledge with each other. The study illustrated that people can and do self-manage post-cancer treatment problems, but that some people require support to do so whereas others can do so in a creative and independent way.65

Caregivers Informal carers often are family members without formal training and with no preparation to fulfil their task. According to Kendall,66 family caregivers may have typical trajectories of psychological, social and spiritual needs in supporting someone dying with cancer, in parallel with the patient. The implications for caregiver support from diagnosis to death and bereavement need to be further assessed. Hall et al 28 assessed the social support needs of colorectal patients and their families 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 made treatment decisions based on their family’s ability to cope. Professional support from counsellors and dieticians was variable, pointing to a need for improvement. Early intervention tailored to caregiver’s needs and skills are needed to avoid the risk of distress of the caregiver and to help medical staff to manage the various aspects of communication.67

Palliative care Whereas demand for palliative care in the community is increasing in many countries, specific palliative care needs of cancer patients are slowly emerging. Some symptoms, such as pain and cachexia, may be more frequent in the final stages of cancer than in the final stages of other diseases. In addition, in previous years palliative care was considered to be a phase in which only symptomatic treatment would be offered. Currently, however, the view has emerged that treatment – like chemotherapy and radiotherapy – is often a part of palliative care. This demands the ability to offer

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medication and to manage the side effects of cancer medication. One of the major challenges in palliative care is possibly that of ensuring that communication between the oncologist and primary care (i.e. referral letters and telephone contacts) 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, allowing the appropriate treatment and nursing care to be provided. We cannot neglect the role of the nurses in palliative care. Nurses that work with dying patients have an opportunity for personal growth, but also for experiencing significant negative emotion leading to stress and ill health.68 Greater planned support for nurses that wish to work with suffering patients may assist in both the care of their patients and their own ability to cope. In Denmark, Warfvinge et al 69 are currently trying out a tele-home care and web-based communication system in palliative care to ensure that the patient, family, GP and specialist have the same views on the purpose and practice of medication and other elements of palliative care. Hospices are developing in many European countries: dedicated home-like environments where patients and their relatives and friends have space and opportunity to live through the last weeks in a dignified and calm atmosphere. In some cases, arrangements are made to continue cancer treatment in hospices, which facilitates their use enormously.

National cancer plans Starting with Denmark in 2000, a large number of European countries have developed National Cancer Plans. The second Danish National Cancer Plan, 2005, mentions that primary care physicians should draw up local guidelines for clinical diagnosis in 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. Although 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 would be developed. This is a recognition of the importance of primary care in cancer care. Danish

cancer mortality rates are higher than in neighbouring Norway and Sweden,70 which may have triggered this extraordinary response. The background to these differences is not well understood as yet. Indeed, many other national cancer plans include recommendations for strengthening the role of primary care, albeit with variable emphasis and detail. Although most cancer plans mention the role of GPs 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 of 2008 only mentions the importance of GPs as part of the cancer care network. However, in many countries there is no specific role for primary healthcare workers. Cancer control is almost totally hospital based, with primary health care available to fill the gaps and to provide some palliative care. National cancer plans reflect the needs of patients and the resources of a specific country. It is useful to look at examples of cancer plans that have been developed elsewhere for ideas about ways to organise 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, as well as issues facing people that survive cancer. Other plans start with a more limited scope.71 The UK Cancer Plan was published in 2000,72 setting out organisational developments for cancer care in the NHS and creating a new system of 34 cancer networks to serve populations of between 500 000 and 3 000 000 people, so as to integrate services between hospitals and community care. In the draft version of the Slovenian national cancer plan in 2009,73 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 faced by primary care doctors in Slovenia are: . . . . . .

education in clinical oncology during residency is insufficient (i.e. one month) the guidelines adopted do not define the role of primary health care communication between the GP 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 not optimal generally insufficient inclusion of the primary level in palliative care.

The distribution of cancer diagnostic and treatment services across the levels of care in an average middleincome country are described in Cancer Control, Knowledge into Action.74 Based on this document,


primary care should provide early referral of suspicious cases, undertake simple surgical procedures (e.g. cryotherapy of precancerous lesions of the cervix), retrieve patients that abandon treatment, include patient support groups, provide patient education and rehabilitation and provide education and training of community caregivers, including traditional healers.

Data and research issues Primary care specific cancer data are being collected in a number of countries, including the UK, the Netherlands, Belgium 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 and covers three million people, or 5% of the UK population. In the southern Netherlands, an automated registration network (RNH) of 22 general practices with a total population of 80 000 is currently being used to generate data on the incidence and prevalence of specific cancer types in primary care. A similar Belgian network called Intego75 gathers data from 90 GPs in 55 practices covering 120 000 patients, totalling 1 450 000 patient years. Both registries have compared their cancer incidence data with the regional cancer registration data and have proved reliable. Another Dutch network (LINH), in which 89 practices with a total population of 340 000 are participating simultaneously,76 is being used to collect information on cancer care provided in general practice. With an interval of approximately ten years, national surveys among a sample of general practices are being carried out, generating huge amounts of data – including on cancer care. However, because these data are retrospective, they have their limitations. In Canada,77 where there is provincial responsibility for health, there are several national registries (the cancer registry, cancer treatment (radiotherapy, chemotherapy), cancer screening programmes and oncology visits) and a large number of different provincial databases related to health, education, employment and other matters, as well as census registries. Complex data combination is required to extract information that facilitates understanding of the history of cancer patients and primary care activities and results. The example of colorectal cancer in Manitoba shows that this is nonetheless possible.78 In Denmark, there are nine accredited national cancer databases (bladder, prostate, gynaecological, upper alimentary, colorectal, haematological, breast, lung and head–neck) but the data and registration are not co-ordinated with the National Cancer Registry.

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There are no systematic data from primary care; this is something to be addressed in the Cancer Plan for Primary Care. This information exemplifies the need (and difficulty) to use the data for analysis and monitoring of interventions, including those in primary care. Due to the nature of cancer and cancer care, longitudinal studies are indispensable and funding for five years or longer is required. However, in some countries, longterm funding and grants are difficult to obtain. At a European level, a number of projects are ongoing, supported by grants from the EU Public Health programme. The European Cancer Health Indicator Project (EUROCHIP)79 and EUROCARE, which studies the survival of cancer patients, are the major ones. Essentially, these projects intend to generate standardised information related to cancer and cancer care. However, as yet they do not provide specific data on cancer in primary care. An initiative to launch such funding is called for.

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 being developed. However, international comparison can only be limited at this point in time, in view of the paucity 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. Renamed CA-PRI, the group plans to hold its third annual conference in Canada in May 2010. For this paper, little has been identified in terms of experience 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 practice and policies in these domains. Not surprisingly we identified co-ordination between primary and secondary care as an area that requires improvement. Quality of care and the patient experience will benefit in most countries from better information exchange and a more active role from primary care. Even though currently research is being done on the role of GPs in cancer care, the role of nursing, psychological support and physical therapy is under-reported and underresearched.

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Although there is a clear east–west gradient in the incidence and survival rates of cancer in Europe – with the highest incidence and lowest survival in the east – resources available for research and improvements in primary care are concentrated in Western Europe and North America. The share of publications and participants from Western Europe at international events testifies to this. Support for and inclusion of practitioners, policymakers and researchers from central and eastern European countries in international exchange would help generate a more effective response by primary care to the increasing need of the population. In addition, across the continent, countries with a weaker primary care orientation would benefit from international support. Although the language barriers are real, they can be overcome and this should help extend the efforts beyond north western Europe and North America to the whole of Europe. ACKNOWLEDGEMENTS

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FUNDING

The study was supported by a grant from the European Forum for Primary Care.


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PEER REVIEW

ADDRESS FOR CORRESPONDENCE

Commissioned; not externally peer reviewed.

Danica Rotar Pavlicˇ, University of Ljubljana, Department of Family Medicine, Slovenia. Email: danica. [email protected]

CONFLICTS OF INTEREST

None.

Received 27 August 2009 Accepted 29 Sepember 2009