Collegian
Volume 17, Issue 2 , Pages 47-50, July 2010

Cancer as a chronic disease

  • Jane Louise Phillips, RN, PhD

      Affiliations

    • The Cunningham Centre for Palliative Care and The University of Notre Dame Australia, PO Box 944, Broadway, Sydney, New South Wales 2007, Australia
    • Corresponding Author InformationCorresponding author. Tel.: +61 0457 507 222/041 1100 617; fax: +61 2 8382 9518.
    • ,
  • David C. Currow, MPH, FRACP

      Affiliations

    • Department of Palliative and Supportive Services, Flinders University, Daw Park, South Australia, Australia

Received 23 April 2010; accepted 26 April 2010.

Article Outline

Summary 

Background

Over the past two decades the number of people living with cancer has increased. Many cancer survivors end up with long term disabilities requiring ongoing care and support. For many people, cancer survival now means living with a chronic and complex condition.

Aim

The purpose of this paper is to provide an overview of the long term management issues for cancer survivors and strategies to enhance their care.

Discussion

Cancer survivors require ongoing support in four key areas: prevention; surveillance; intervention for consequences of cancer and its treatment; and coordination between specialist and generalist providers.

Conclusion

Cancer survivors experience significant physical and psychological morbidity which makes minimising their burden of disability and distress an important priority. Survivors require ongoing care that is well co-ordinated, focuses on prevention, provides going surveillance whilst minimising and managing the long term effects of treatment and other co-morbidities.

Keywords: Cancer, Co-morbid conditions, Cancer survivor

 

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Introduction 

Better identification of risk factors, earlier diagnosis, new technologies and improved treatments has resulted in increasing numbers of Australians’ affected by cancer living longer. Cancer data are collected at two mandatory census points, at diagnosis (incidence) and at death (mortality). Over the past two decades there has been a growing gap between cancer incidence and mortality (Australian Institute of Health and Welfare, Cancer Australia, & The Australasian Associations of Cancer Registries, 2008). At the end of 2004, there were some 655,000 Australians who had been diagnosed with invasive cancer (excluding all non-melanocytic skin cancer diagnosis) who were still alive (Australian Institute of Health and Welfare et al., 2008). The most prevalent survivors of cancer were people with breast cancer (130,000), melanoma (116,000), prostate cancer (98,000) or colorectal cancer (91,000) (Australian Institute of Health and Welfare et al., 2008).

However, what is not reflected in this survivorship data is the presence of two distinct sub-populations: one composed of disease free survivors of cancer and another composed of people living with cancer from the time of diagnosis or with recurrence of disease. It is not possible to quantify the actual number of people living with recurrent disease because the prevalence of metastatic cancer is not routinely collected in Australia (Cancer Australia, 2008) or around the world. It is also difficult to accurately identify the growing number of adults in these data who are survivors of a childhood cancer as it is estimated that 80% of children and adolescence diagnosed with cancer will go onto be long term cancer survivors (Oeffinger et al., 2006). Another limitation of existing cancer data collection systems is that there are few opportunities, at a population level, to monitor cancer survivors’ quality of life, the effects of new treatments or the intermediate and long term toxicities associated with various therapies (Cancer Australia, 2008).

Cancer treatment is complex, involving many disciplines and treatment modalities delivered in a variety of care settings across the country. Despite every effort being made to minimise the medical and social hazards associated with cancer treatments, many treatments have been found to have long term consequences (Hewitt, Greenfield, & Stoval, 2006). Some of these long term effects include persistent neuropathies decreased immune functioning, cardiac toxicity and weight gain, which in turn can contribute to the development or worsening of several co-morbid conditions (Pinto & Trunzo, 2005). Some survivors of cancer experience a range of other disabling effects which impact on their day to day functioning, such as endocrine dysfunction, infertility, functional decline and psychosocial morbidity (Hewitt et al., 2006). Although many of these effects gradually improve over time, for some people they will live with the effects of cancer or its treatment for the rest of their lives. Many survivors of childhood cancers who received treatment in the 1970s and 1980s now experience a range of serious health problems which require ongoing monitoring and management (Oeffinger et al., 2006).

However, cancer is essentially a disease of ageing, mirroring patterns of non-malignant disease. Older people newly diagnosed with cancer often present with other chronic and complex conditions requiring ongoing management – both pharmacological and non-pharmacological. Polypharmacy can be an issue for many older people complicating their cancer management and requiring the ongoing involvement of other clinical specialities (Lane, Christ, Khan, & Backus, 2001). These pre-existing co-morbidities may also be exacerbated by cancer itself or its various treatments.

Various definitions are ascribed to a ‘cancer survivor’. For the purpose of this paper a ‘cancer survivor’ is someone who has experienced cancer and who is still alive (Morgan, 2009). This broader definition is appropriate because many people who have completed treatment will remain disease free but require ongoing support to manage disease recurrence fears, long term treatment side effects and a range of co-morbidities (Lotfi-Jam et al., 2009). However, an increasing number of survivors will live with recurrent cancer, requiring ongoing monitoring, treatment, care and support. Their management frequently involves the use of long term therapies. Consequently, for many people cancer survival, regardless of their disease status, increasingly means living with a chronic and complex condition.

The purpose of this paper is to provide an overview of the long term management issues for cancer survivors and strategies to enhance their care.

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Cancer as a chronic disease 

Chronic diseases impact on the quality of life of individuals, families, and communities and are the leading cause of illness, disability, and death in Australia and other resource rich countries. Similar to other chronic diseases, providing adequate support and care for cancer survivors is challenging in our current health care system which is often: orientated towards the management of acute illnesses; fails to emphasis the person's own role in self management; provides inconsistent disease specific follow-up; and overlooks the importance of secondary prevention.

Australia's National Services Improvement Frameworks (NISF) attempt to address these limitations by providing outlining the action required within the health care system to minimise the impact of various chronic conditions, including cancer (National Health Priority Action Council, 2006). The NISF developed for cancer follows the patient journey from prevention through to end-of-life care and in doing so, acknowledges that the needs of people with cancer extends beyond the initial diagnosis and treatment phase (Lotfi-Jam et al., 2009). The ‘care after and between periods of active treatment’ acknowledges that a range of strategies are needed to identify and address needs, provide appropriate supports and information about follow-up, practical issues, support services and self care (National Health Priority Action Council, 2006).

During the time after and between periods of active treatment cancer survivors’ concerns are often primarily relate to issues associated with: recurrence, secondary malignancies and long term consequences of cancer treatment (Morgan, 2009). A landmark United States Institute of Medicine (IOM) report ‘From cancer patient to cancer survivor: lost in transition’ (Hewitt et al., 2006) advocates for a number of changes to ensure that cancer survivors are better supported in four key areas: prevention; surveillance; intervention for consequences of cancer and its treatment; and coordination between specialist and generalist providers. These essential components of survivorship care are discussed below.

Prevention 

Cancer survival increases the risk of developing a second cancer, which makes the integration of relevant cancer prevention information into all follow-up care a priority (Watson, Sugden, & Rose, in press). The cancer risks include: a new primary in the same site or organ system (given the person's original risk factor(s)); a cancer as a result of therapy; or a cancer unrelated but with increasing risk because of age. Emerging evidence suggests that cancer survivors will often benefit from a range of information about various health behaviours that could reduce their cancer risks such as: smoking cessation, regular cancer screening, healthier eating, reducing alcohol intake and increasing physical activity (Pollack, Adamache, Blythe Ryerson, Eheman, & Richardson, 2009). As survivors contemplate their life post treatment, there is a window of opportunity for health professionals to support and inspire them to take action to reduce their modifiable cancer risk factors (Lotfi-Jam, Schofield, & Jefford, 2009).

Many of the lifestyle modifications recommended for the prevention of second cancers can have a positive impact on ameliorating the effects of cancer treatment as well as impacting positively on other chronic and complex conditions (Pollack et al., 2009). Educating survivors about the possible long term effects of cancer and its treatments and providing them with practical strategies to manage these long term effects promotes a greater sense of control or mastery (Doyle & Kelly, 2005).

Surveillance 

Ongoing surveillance ensures that all recurrent or new cancers are identified as early as possible and at a time when they are most amendable to treatment (Lotfi-Jam et al., 2009). Establishing a regular surveillance schedule for cancer survivors at the completion of treatment may help to allay their recurrence fears whilst ensuring that any long term physical and psychosocial effects are systematically monitored (Lotfi-Jam et al., 2009). Determining who is responsible for long term surveillance is particularly important as traditionally medical monitoring has tended to taper off over time, often just as these longer term side effects are emerging (Doyle & Kelly, 2005). If long term surveillance is to be managed by a non-cancer specialists then there needs to be a system in place which ensures that all of the factors that ought to be reviewed are adequately covered. Strong evidence supports the role of general practitioners in providing long term follow-up for people who have no current evidence of disease (Grunfeld, 2008, Grunfeld et al., 1999).

The integration of a detailed treatment summary that people can retain for life is an essential element of a survivorship care plan (Ganz, Casillas, & Hahn, 2008). This individualised survivorship care plan ought to provide a comprehensive cancer treatment history, details about any continuing therapies and any treatment complications experienced, plus contact information about the various members of the treating multidisciplinary team (Ganz et al., 2008). Without this detailed summary it is difficult for cancer survivors to become partners in their own care.

The number of therapeutic modalities available for the treatment of cancer continues to increase with more people being exposed to new therapies (Floyd et al., 2005). The development of targeted therapies has resulted in many people with cancer being required to undertake long term maintenance therapy. Many of these new treatments have limited follow-up data which increase the risk of survivors developing side effects that have not yet been characterised. A recent example of an unpredicted long term side effect is the cardiac dysfunction observed in women treated with trastuzumab (Perez & Rodeheffer, 2004). People at particular risk were women who had already had anthracycline-based chemotherapy. Despite these effects being reported several years ago there are still insufficient data to determine the long term effects of this monoclonal antibody on cardiac dysfunction (Raschi et al., 2010).

These factors underscore the importance of ongoing surveillance for cancer survivors as well as determining who is best placed to undertake this role.

Intervention for consequences of cancer and its treatment 

Cancer is a life changing experience. Not only for the person diagnosed with cancer but also for their families and/or caregivers. There are over 600,000 families and/or caregivers across Australia who provide practical and emotional support to cancer survivors on a continuous basis. Providing emotional support, transportation and household duties has been identified as the most difficult duties for cancer caregivers (Bakas, Lewis, & Parsons, 2001). Determining the impact on families and/or caregivers of providing day to day support over an extended period of time is an important research priority area given the growing number of survivors (Girgis & Lambert, 2009).

Survivors can experience a range of disabling medical problems or symptoms, as well as psychological distress and be required to address a number of social issues related to their ongoing employment, education and insurance status (Hewitt et al., 2006). Many cancer survivors are often left with permanent disabilities and impaired function (Hewitt et al., 2006). As previously mentioned, it is increasingly recognised that cancer survivors often experience ‘late effects’ of their treatment. This is certainly the case for survivors of childhood cancers who have been found to have higher levels of morbidity and mortality than other adults (Oeffinger et al., 2006) well into adulthood.

Cancer survivors often experience ongoing psychological distress which needs to be screened for on a regular basis (Lotfi-Jam et al., 2009). A range of interventions are required to effectively manage the various long term physical and psychosocial effects of cancer and its treatment.

Integrating a rehabilitation approach into the overall treatment and management plan for people newly diagnosed with cancer would help to ameliorate some of the issues that cancer survivors currently experience (Doyle & Kelly, 2005). Seeking specialist rehabilitation input at the commencement of cancer treatment enables people to put a plan in place that focussed on optimising their ‘… physical, psychological, social, vocational, avocational and educational potential within the limits imposed by the disease and its treatment’ (Kurtzman, Gardner, & Kellner, 1988, p. 791). Adopting a rehabilitation approach offers the potential to lessen the long term impact of cancer and its treatment effects on peoples’ lives by promoting the maintenance of their function and independence (Lane et al., 2001).

Coordination between specialist and generalist providers 

After the intensity of the treatment phase, cancer survivors often report feeling overwhelmed, ill prepared and very uncertain about their personal future (Lotfi-Jam et al., 2009). In the absence of clear guidelines as to how their ongoing care will be managed and monitored, these feelings of uncertainty are often amplified. Internationally, there is currently a generally a lack of consensus as to whether long term cancer survivors ought to routinely have their surveillance managed by their treating oncologists or primary care providers (Blank, 2009). In Australia, oncologists have traditionally provided cancer followed-up and surveillance (Brennan & Jefford, 2009), whilst general practitioners have often played a more minor role assuming overall responsibility for the management of the person's co-morbidities (Mitchell, 2008). However increasing numbers of survivors and cancer workforce issues is promoting the exploration of alternative models of follow-up cancer care (Brennan and Jefford, 2009, Mitchell, 2008).

Recent research from the United Kingdom suggests that primary care physicians are prepared to play a more prominent follow-up role for cancer survivors (Watson et al., in press). However, increased involvement of general practitioners in cancer follow-up and surveillance requires them to undertake relevant continuing professional development (Watson et al., in press). Survivor care plans have also been promoted as a tool for improving follow-up care and to improve communication between specialist and generalist providers although their impact on health outcomes is not yet clear (Watson et al., in press). These care plans are a synoptic document that summarising a person's cancer treatment and provides guidance as to their future health care needs (Ganz et al., 2008). The development of survivor care plans may help to ensure that all health professionals providing follow-up care receive adequately detailed cancer care records and details about the recommended follow-up schedules so that the care is not compromised (Ganz et al., 2008).

Health professionals providing care to cancer survivors also need access to evidence based survival guidelines that include assessment and screening tools suitable for identifying and managing the long term effects of cancer treatment (Hewitt et al., 2006). Unfortunately only limited progress has been made towards the development of such guidelines (Hewitt et al., 2006).

There is also a need to increase the health workforce's capacity to manage and better support cancer survivors. There is a need to integrate survivorship education into the undergraduate curricula as well as providing relevant continuing professional educational opportunities for all health professionals involved in the delivery of cancer care (Hewitt et al., 2006).

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Conclusion 

Cancer survivors experience significant physical and psychological morbidity which makes minimising their burden of disability and distress an important public health concern. Survivorship care is an essential element of all cancer care which commences at diagnosis and continues throughout the survivor's life in order to optimising their outcomes. Survivors require ongoing care that is well co-ordinated, focuses on prevention, provides going surveillance whilst minimising and managing the long term effects of treatment and other co-morbidities. Effectively managing the chronic care needs of this growing population requires a co-ordinated, whole-of-systems approach.

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PII: S1322-7696(10)00026-0

doi:10.1016/j.colegn.2010.04.007

Collegian
Volume 17, Issue 2 , Pages 47-50, July 2010

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