Around two million people are living with or beyond cancer in the UK and this figure is rising by more than 3% per year [
1]. Whilst increasing survival rates are to be celebrated, the experiences and needs of those who have completed their primary cancer treatment have been relatively neglected [
2,
3]. Health professionals may be unaware of who is struggling with problems [
4]. The best ways to assess problems people experience or which interventions are effective in helping relieve or prevent problems following primary treatment are largely unknown [
2]. With rising numbers of survivors the need to understand problems experienced following treatment, how they can be resolved, ways in which people manage their own problems and how health professionals can support self-management are becoming increasingly important for service planners and health policy makers.
The range of problems faced by cancer survivors and how they change and resolve over time are not well understood. No published research has systematically studied the health and wellbeing of cancer survivors over the years following primary treatment [
2]. US and European evidence demonstrates that cancer survivors fare less well than healthy individuals in terms of health and wellbeing [
5,
6], and recent UK evidence has shown that cancer survivors have similar scores to people with long term conditions on a range of measures including psychological wellbeing and physical functioning [
7]. Cancer survivors have also been shown to access more health services than healthy counterparts [
5,
6] These studies cannot reveal the continuing care needs of individuals and whether these are met through current health care provision [
2].
Failing to provide appropriate long term support across the spectrum of problems faced following primary treatment may have negative consequences for health and wellbeing of the growing number of survivors [
4] and may prevent them from returning to productive lives, both socially and economically [
2]. Evidence suggests that most survivors manage to live well with problems associated with cancer and its treatment; however, a substantial minority (around one third) consistently report difficulties in the long term [
8]. Early intervention could help alleviate some longer term problems. For example, predicting which people are most at risk of developing problems could reduce avoidable hospital admissions [
9]. In order to know how to intervene, first we must understand how health and wellbeing is restored over time (or not) and which risk and protective factors indicate who is most likely to need support and when.
Survivors of colorectal cancer form the largest group of cancer survivors affecting men and women [
10]. Incidence is high (it is the third most common cancer) and survival rates have doubled in recent years with around 250,000 UK survivors [
11]. Survival rates are around 52% irrespective of extent of disease at cancer diagnosis, with little decline in survival rates beyond 5 years, at which point survivors are deemed by convention to be cured [
12]. As well as being a large group of survivors, colorectal cancer is treated using all the main treatment modalities of surgery, radiotherapy and chemotherapy, and so colorectal cancer patients are likely to experience many of the problems associated with cancer therapy. Available studies have consistently found that people with colorectal cancer are at risk of experiencing poor quality of life [
13-
18]. The cancer experience and ongoing symptoms have an impact on physical functioning and carrying out daily activities which may have long term consequences for the resumption of normal everyday life, such as return to work and finances [
14,
19]. Symptoms such as fatigue, psychological distress, sexual dysfunction and altered bowel habits may be long lasting [
13,
14,
18,
20]. These persistent difficulties alongside continued feelings of uncertainty and concerns for the future [
21] not only have implications for an individual's health but also their sense of subjective wellbeing.
While much of the literature suggests that most colorectal cancer patients return to near pre-diagnosis status following surgery, Taylor et al [
22] argue this literature has largely focused on physical side effects rather than recovery as a total human response, including emotional, spiritual and social factors, which may be equally important in the restoration of health and wellbeing [
22]. Much of the work on quality of life in colorectal cancer is from cross-sectional studies [
18]. Some longitudinal studies have been conducted in colorectal cancer, such as those by [
23] and Taylor et al [
22]. However, these have either been small scale or taken a narrow focus on recovery following cancer, such as psychological status or symptom distress [
22,
23]. A comprehensive, long term study exploring a comprehensive range of aspects of health and wellbeing in colorectal cancer patients and following the normal pattern of restoration of health and wellbeing has not been conducted. This paper presents the protocol for such a study, funded by Macmillan Cancer Support, to be conducted by the Macmillan Survivorship Research Group in conjunction with the University of Southampton and the National Cancer Research Network.
Foster and Fenlon [
24] have developed a conceptual model of recovery of health and wellbeing once cancer treatment is finished, which recognises that social, physical and emotional factors all have an impact on recovery (Figure ). The central core of the model assumes that people's subjective sense of health and wellbeing diminishes following the diagnosis and treatment of cancer and that this recovers over time. The extent to which health and wellbeing are affected and the rapidity with which they are restored will be affected by many factors. These include the severity of the illness, its treatment and subsequent impact on physical health; and also pre-existing factors, such as the age, gender and social status of the individual affected. The way in which people cope with this and work to regain their health will depend on internal factors, such as personality and self-efficacy to manage cancer related problems, and external factors, such as the support they have available to them. Our previous research suggests that confidence is key to enabling people to manage problems following primary cancer treatment and that this is important for recovery of health and wellbeing. This model will inform the data collection in the current study.
1 Alison Richardson,2,3 Julia Addington-Hall,2 Peter Smith,2 Jessica Corner,2 Jane Winter,3 and Claire Foster1
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