PRIMARY CARE
AND
CARE FOR CHRONIC CANCER PATIENTS IN EUROPE
Draft of May 3, 2009
Authors:
Dr Danica Rotar-Pavlic PhD[1]
Dr Pim de Graaf MPH[2]
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 2009[1], 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 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 Report[2] 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 care[3]. 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 16patients with a diagnosed cancer under their care at any one time[4].
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 65-74[5].
A full-time GP would expect to encounter only one new patient each year with colorectal cancer.[6][7][8][9]. 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 practice[11] 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 diagnosis[12].
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 al[14], 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 workload[15].
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 2003[17].
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 cure[18].
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 information-education-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 GPsۥ potential role in relation to cancer rehabilitation process and the concept of survivorship[20]. GPs often loose contact with the patients during their cancer treatment 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 help[21][22].
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 patientsۥ children during or after treatment. Hospital staff had been involved in 5,9%[23].
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 distress[24].
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 survivors[25].
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 receive[26].
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 care[27].
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 survivors[28].
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
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 al[30] offer the following terminology to describe the character of cancer care provided by primary care and specialist care: