The physical and practical problems experienced by cancer survivors: A rapid review and synthesis of the literature

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Abstract

Purpose

A rapid and comprehensive review to identify what is known and not known about the physical and practical problems faced by adult cancer survivors.

Methods

A systematic literature review process was used. This focused on published reviews to enable a fast but rigorous identification of both the gaps and well-researched areas within survivorship.

Results

The search identified 5121 reviews, of which 42 were screened and 9 met the quality and inclusion criteria. The majority of papers focused on physical well being (n = 6) with the remaining papers focusing on practical well being (employment and finance). The quality of the reviews varied (ranging from weak to good). Gaps identified include sexual function, lower-limb lymphoedema, peripheral neuropathy, bladder and GI problems, hormonal sequelae, older cancer survivors, work impact of cancer and context-specific unmet supportive care needs. The review found a lack of standardised nomenclature for survivorship and methodological limitations.

Conclusions

Four main gaps in knowledge relating to the practical and physical problems associated with cancer survivorship have been identified. These are key symptoms, unmet supportive care needs, employment and older cancer survivors, and should be addressed by future research and systematic literature reviews. Work is also needed to address the nomenclature of survivorship and to improve the methodology of research into cancer survivors (including standardised measures, theoretical frameworks, longitudinal design, inclusion of older survivors and age-matched controls for comparison). The review highlighted the need for better research within the identified areas in order to improve the experiences of cancer survivors.

Introduction

Approximately two million people across the United Kingdom live with a diagnosis of cancer. Of these, 1.24 million had an initial cancer diagnosis more than five years ago (Maddams et al., 2009). Worldwide, 24.6 million people were diagnosed with cancer in the last five years and it is expected that 50% of these will live at least five years (CR UK, 2008). With the increasing incidence of cancer and the improvement in treatment and prognosis leading to better survival rates, it is anticipated that the number of cancer survivors is likely to grow by 3% per year (Maddams et al., 2009).

The term cancer survivor as way of describing those who are living with and beyond cancer has emerged relatively recently. There is currently no clear and universally accepted definition of what cancer survivor means and it often used to refer to people at any point on the cancer trajectory from diagnosis to end of life. Thus it can include those who are living with cancer and those who have had cancer in the past (Richardson et al., 2009).

It is increasingly recognised that the impact of cancer does not end after treatment and that current approaches fail to address the full range of physical, psychological, social, spiritual and financial needs that cancer survivors may have after treatment (Feuerstein, 2007). The Health and Well Being Survey (Macmillan, 2008) found that cancer survivors reported poorer health and well being than the general population. As a result of cancer and its treatment, survivors are often left with the physical reminders such as pain, fatigue, sterility and loss of sexual function. Indeed, the aftermath of treatment has been described as worse than the disease itself (Doyle, 2008). A recent study of 1152 people with breast, colorectal and gynaecological cancers found that 30% reported more than five moderate or severe unmet needs at the end of treatment. For 60% of these individuals the needs remained six months later (Armes et al., 2009).

Cancer survivors also experience issues relating to practical well being, which encompasses employment and finance. In the UK it is estimated that there are 700,000 people of working age who have had cancer diagnosis (ONS, 2003). Many of these feel that they need to return to work when they feel fit and ready (Amir et al., 2007); however, a meta-analysis (de Boer et al., 2009) which compared cancer survivors to people with no cancer, found that cancer survivors are 1.37 times (95% CI; 1.21–1.55) more likely to be unemployed than those without cancer. Furthermore, many people affected by cancer report some degree of economic hardship resulting from loss of income and extra costs incurred due to cancer (Lauzier et al., 2008).

Given the survival rates and the physical and practical costs to cancer survivors, the UK’s Cancer Reform Strategy (DoH, 2007) identified a need to shift care towards personalised assessment, care planning and self-management, supported with information on the consequences of cancer and its treatment. This will necessitate a shift from viewing cancer as an acute illness to a greater focus on cancer as a chronic illness, with a view to maximising health and well being after treatment.

The survivorship field is in its infancy and the complex array of potential risks, target problems and potential long term outcomes which individual survivors experience are just beginning to be explored and understood (Feuerstein, 2007). In the UK, the National Cancer Survivorship Initiative (NCSI) was established following the publication of the Cancer Reform Strategy (DoH, 2007) in order to consider approaches to survivorship care and how these can best be tailored to meet individuals’ needs. The NCSI aims, by 2012, to have taken steps to ensure that cancer survivors get the care and support necessary to enable them to lead as healthy and active a life as possible, for as long as possible.

In order to identify key areas for future research into cancer survivorship the NCSI commissioned research to identify what is known and not known about the health and well being and care needs of cancer survivors. This paper reports the findings of the rapid and comprehensive scoping and synthesis of the research evidence into the physical and practical aspects of health and well being for cancer survivors and identifies priority areas for further research.

Section snippets

Aim

The aim was to undertake a rapid and comprehensive review of the literature to identify what is known and not known about the physical and practical problems faced by adult cancer survivors. This will identify areas that should be addressed by future research.

Scope

The scope of this review was the consequences of cancer on well being, focusing on physical (e.g. symptoms) and practical (employment and finance) problems. As part of the NCSI review a separate rapid review of the psychological and social problems faced by cancer survivors was also carried out using the same search method. A precise phase-based conceptual framework was adopted in order to focus the review based on a framework proposed by Feuerstein (2007). This identifies 6 phases of

Materials and methods

A systematic literature review process was adopted for the rapid review. The principles of systematic review that were retained included identifying search engines, generating inclusion and exclusion criteria that assess for relevance and quality and assessing abstracts independently. However, it differed from a traditional systematic review in that only published review articles were examined. This approach was selected as it was deemed cohesive with a fast but rigorous identification of both

Results

5121 potentially relevant papers were identified, from which 42 non-duplicate abstracts met the inclusion criteria and the full papers were screened using the extraction sheet. Of these, nine papers met the quality and inclusion criteria and merited inclusion in the review (Fig. 1).

The included review papers mostly examined multiple disease groups (n = 6), with the remaining three papers looking at the survivors of ovarian, prostate and testicular cancer. Only one review focused specifically on

Discussion

The aim of this rapid and systematic review of the literature was to identify what is known and not known about the physical and practical problems faced by adult cancer survivors. The review identified that there is evidence of survivorship research being undertaken, although the scope and focus of the research is limited and methodological limitations abound. The areas where we have some knowledge on the physical and practical well being of cancer survivors (Table 3) were dominated by

Limitations and recommendations

This review was commissioned by the NCSI as a scoping review rather than a comprehensive systematic review. Relevant and potentially important findings published from primary research papers outside the time frame of the review may have been excluded from this literature review. Consequently, in making recommendations for future research it is important to acknowledge that a review of reviews can only provide information on existing research and identified gaps in the literature, and may

Conflict of interest

None declared.

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