Support Care Cancer DOI 10.1007/s00520-015-2626-8

ORIGINAL ARTICLE

A survey investigating the associations between self-management practices and quality of life in cancer survivors C. Shneerson & T. Taskila & S. Greenfield & N. Gale

Received: 17 July 2014 / Accepted: 22 January 2015 # Springer-Verlag Berlin Heidelberg 2015

Abstract Purpose To explore whether the use of self-management (SM) practices in cancer survivors impact on their health beliefs and quality of life (QoL). This is an important step in attempting to improve cancer survivors’ health pathways and their experiences of living with cancer. Methods A cross-sectional, postal survey study was undertaken amongst cancer survivors identified from a teaching hospital in the West Midlands, UK. The questionnaire collected demographic data from respondents and information on the number and types of SM practices—diet, exercise, complementary and alternative medicine (CAM), psychological therapies, support groups and spirituality/religion—cancer survivors used after completing their treatment. Information was also gathered regarding their QoL and internal health locus of control (HLC). Results A total of 445 cancer survivors responded to the survey. Multi-linear regression analysis found a positive association between SM uptake and HLC; however, none was found between SM uptake and QoL. Treatment type, ethnicity and age were significantly associated with an increased use of SM practices. Conclusion The study findings have implications for health care providers, who need to be aware of the links between SM C. Shneerson (*) : S. Greenfield School of Health and Population Sciences, College of Medical and Dental Sciences, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK e-mail: [email protected] T. Taskila The Work Foundation, Lancaster University, 21, Palmer Street, London SW1H OAD, UK N. Gale School of Social Policy, HSMC, University of Birmingham, Park House, Edgbaston, Birmingham B15 2RT, UK

uptake and treatment type, ethnicity and age, when considering how best to incorporate SM into cancer survivors’ lives. This can help cancer survivors who may benefit from using specific SM interventions that consider the sociodemographic and treatment-related factors impacting on them. Future research would benefit from assessing the motivations and benefits of cancer survivors of different ages, ethnicities and treatment modalities in terms of their decision-making about SM use. These findings suggest that SM uptake is associated with higher internal HLC in cancer survivors. However, the influence of treatment type, ethnicity and age plays a more significant role in determining SM uptake than HLC. Cancer survivors using SM may be more motivated to utilise SM practices in relation to their age, ethnicity and treatment type, generating positive health outcomes in the process. Policy-makers should be aware of the supportive role SM interventions can play in cancer care and survivorship, with future research focussing on the perceived benefit of these SM interventions to cancer survivors. Keywords Cancer . Quality of life . Health beliefs . Self-management . Survivorship

Introduction Due to advances in early detection and diagnosis and more sophisticated treatment regimes [1], the term ‘longevity’ increasingly features in the terminology surrounding cancer survivors [2], meaning that cancer is moving from an acuteillness model to one which sits more within the framework of chronic illness. As such, many of the long-term side effects and experiences of cancer survivors are similar to those of

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people living with chronic illness [3]. However, although increasing survival rates forecast good news for cancer patients, longevity is not the solution to all aspects of cancer survivors’ lives. Due to the sequelae caused by cancer treatment, many patients are left with long-term physical and mental disabilities, including fatigue, nausea, physical weakness, weight changes, anxiety and depression [4]. They also frequently report feelings of abandonment and isolation following the end of their cancer treatment [5, 6], which can exacerbate symptoms such as depression and anxiety. This can impact on their quality of life (QoL), which has been reported as being lower than other population groups [7]. As a result of these problems, methods for improving cancer survivors’ QoL and long-term health outcomes are required. The incorporation of self-management (SM) strategies into cancer survivors’ daily lives can facilitate self-directed support to those who might benefit from them [8]. SM is a nebulous concept, meaning different things to different people and incorporating numerous health and lifestyle practices. Exercise and dietary practices have been found to be popular forms of self-management in cancer survivorship [9], and previous studies have estimated complementary therapy use to be as high as 40 % [10]. A multitude of SM definitions exist, due to the wide range of activities that can be perceived as SM [11]. However, in this paper, SM has been defined as ‘The individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition’ [12]. This definition of SM is as inclusive as possible, encompassing six categories of SM—diet, exercise, psychological therapies, support groups, spirituality/ religion and complementary and alternative medicine (CAM). The implementation of these SM practices can encourage cancer survivors to make lifestyle choices to improve their health and well-being, whilst easing pressure on health care resources and promoting patient choice [11]. Recent guidelines have promoted the use of SM, acknowledging that the awareness and active participation of individuals in their recovery, recuperation and rehabilitation from cancer can help minimise the long-term side effects from their treatment, as well as aiding their survival, health and well-being [8]. Several systematic reviews have examined the impact of individual SM practices on cancer patients’ QoL and health outcomes with mixed findings [13–15]. These include a review examining the effectiveness of peer support SM programmes for cancer patients in providing psychosocial adjustment, which found a high level of satisfaction for the programmes, yet evidence for their psychosocial benefit was mixed [16]. Systematic reviews summarising the effect of exercise on QoL in cancer patients and survivors [14, 17–19] have found moderate-quality evidence to suggest that exercise does improve these outcomes. In addition, a meta-

analysis [15] investigating the effects of the psychological therapy, cognitive behavioural therapy on QoL in cancer survivors, found it to have a significant effect on improving QoL. In terms of CAM and QoL, many systematic reviews have been published [20–24], but these have tended to focus on people undergoing active cancer treatment or in the palliative or terminal stages of care. However, a recent systematic review and meta-analysis examining the effect of different types of CAM in improving QoL in cancer survivors showed CAM to be significantly associated with increased QoL, although the authors pointed out that the quality of the evidence reviewed was poor, indicating that more rigorous research needs to be undertaken [13]. The extent to which an individual believes that their health outcomes are shaped by their health behaviours is known as their health locus of control (HLC). Those with a high internal HLC are presumed to hold the belief that someone becomes healthy or unwell as a result of their own behaviours [25]. This paper differs from other published studies, as it reports on study findings relating to the use of multiple SM practices in cancer survivors and how their uptake is associated with their QoL and internal HLC, exploring whether any associations between these variables are affected when controlling for the demographic variables age, ethnicity, gender, income, cancer type and treatment type. It is necessary to look at the uptake of multiple SM practices to understand more about the whole experience of managing a disease—incorporating the psycho-social aspects of care—rather than focusing purely on a one-dimensional, intervention-focussed, bio-medical approach. By exploring the use of multiple SM practices in cancer survivors, a clearer picture can be drawn as to how their combined use contributes to their overall health and well-being. This is an important step in attempting to improve cancer survivors’ health pathways and their experiences of living with cancer. Cancer patients with a high internal HLC may be more likely to access SM practices due to an increased sense of responsibility towards their health outcomes [26], something which is indicated in previous studies published in the UK, Europe and America, which have shown significant associations between internal HLC and SM use [27–30]. This suggests that people with a high internal HLC are more motivated to incorporate certain SM practices into their daily lives than those with a low internal HLC. It is important to examine cancer survivors’ use of multiple SM practices in relation to their internal HLC and QoL to enable a greater understanding of the reasons why cancer survivors may choose to use certain SM practices in their day-today lives. Hence, the purpose of this paper is to report on study findings exploring any associations between SM practice uptake and QoL and HLC, in relation to the age, gender, ethnicity, income, treatment type and cancer type of the study participants.

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Methods Study design The study design undertaken was a cross-sectional, postal survey. The EQ visual analogue scale (EQ-VAS) was used in the survey to measure respondent’s self-rated health on a vertical, visual analogue scale and can be used as a measure of general health related QoL [31]. It has good reliability, has been validated for use with cancer patients and survivors [32] and is also designed for self-completion by respondents, making it ideally suited for use in postal surveys [31]. The EQ-VAS allowed a comparison of QoL to be made between cancer survivors with high and low levels of uptake of SM practices. Cancer survivors’ health beliefs were measured using section B of the Multi-dimensional HLC (MHLC) scale [25]. The MHLC scale consists of 18 items, has a well-established validity and reliability [25] and has previously been used in studies of cancer patients [33]. It is made up of three Likert-type scales: internal, powerful others and chance. Those scoring highly on the powerful others and chance scales are said to have a high external HLC and are presumed to have generalised expectancies that factors such as fate, luck, chance or powerful others will determine their health outcomes, whilst those with high internal HLC scores are presumed to hold the belief that someone becomes healthy or unwell as a result of their own behaviours [25]. The information collected from the Internal subscale of the MHLC was used to identify whether respondents with a higher internal HLC had a higher uptake of SM practices. To enable SM to be effectively measured in the questionnaire, an ‘operational’ definition of SM was generated following a review of the literature [34–36], discussions with oncology health professionals and patient representatives in the West Midlands, cancer support workers and CAM researchers, about the main types of SM practices thought to be predominantly used. These SM practices were classified under the six categories of diet, exercise, psychological therapies, support groups, spirituality/religion and CAM. The questionnaire was piloted with four patient representatives from the regional Cancer Network, and suggested changes around capturing accurate demographic information were incorporated into questionnaire design.

obtained from the local R&D department in April 2012 (Project reference number RRK4412). All participants’ medical records were cross-checked against the data from the West Midlands Cancer Intelligence Unit to ensure vital status (dead/alive) and that they had a confirmed cancer diagnosis, increasing data accuracy [37]. All personal data obtained were treated confidentially and stored securely. Eligible participants were identified and invited to participate using the criteria specified in Table 1. Participants were recruited and study data collected between May and October 2012. Questionnaire completion and return implied informed consent. This was explained in the information sheet sent alongside the questionnaire. A reminder questionnaire was sent to non-responders after 1 month, after which no further contact was attempted. Sampling Sample size calculations indicated that data from 234 cancer survivors with low SM uptake, and 234 cancer survivors with high scoring SM uptake, would be required to show a fourunit difference in QoL measured by the EQ-VAS (SD 13.3), with 90 % power and 5 % significance [31]. Previous literature [38] has shown that a small effect size (0.2) on the EQVAS is equivalent to a difference of 3.5 points on the EQ-VAS in the general population and 3.9 points in critically ill patients. Other literature has indicated that significant differences between EQ-VAS scores in individuals differing in health status were around 5 % of their entire score ranges (equivalent to 5 points on the EQ-VAS scale) [39]. The EQVAS scale ranges from 0 to 100 [40]; therefore, a difference of 4 points between the two groups seemed feasible. Assuming 5 % deaths and a response rate of 50 %, 957 cancer survivors were identified and sent a questionnaire. Table 1

Eligibility criteria of study participants

Eligibility criteria of participants Inclusion criteria

Setting, access and recruitment The study setting was the West Midlands, UK. The sample population was selected from cancer patients who had been treated in an oncology outpatient department at a large teaching hospital. Access to the sample population was sought through oncology consultants based at the participating hospital. Ethical approval was obtained from the West Midlands local research ethics committee in February 2012 (REC reference 12/WM/0030). Research governance approval was

Exclusion criteria

• ≥18 years old • Histological diagnosis of one of the ten most common UK cancers (breast, lung, colorectal, prostate, non-Hodgkin’s lymphoma, melanoma, bladder, head and neck, stomach and oesophagus) • Willing to provide informed consent • Free from metastatic disease/local recurrence of disease at study start • Must have undergone active cancer treatment over a year before • Multiple prior cancer histologies/cytologies • Active oncology treatment received within a year • Cancer treatment finished over 5 years ago • Patients being treated palliatively • Evidence of metastatic spread/local recurrence of disease

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Data analyses SPSS version 19.0 was used for analysis. Any significant associations between SM uptake and the independent variables EQ-VAS and internal HLC were explored using correlation analysis. Due to the abnormal distribution of the data, nonparametric testing was used. The Spearman rank order correlation co-efficient was used to describe the strength and direction of the relationship between the variables. Stepwise multi-linear regression explored whether associations between the independent variables EQ-VAS, internal HLC and SM scores existed when controlling for age, gender, ethnicity, income, cancer type and treatment type, as information on these variables had been collected in the questionnaire and they have previously been found previously to influence SM uptake, QoL and HLC [5, 13, 26, 41, 42]. Where any associations were found, sub-group analyses were carried out to look for any further associations between the demographic variables and the six categories of SM: diet, exercise, CAM, psychological therapies, spirituality/religion and support groups.

Results Demographics Of the 957 questionnaires sent, 445 (46 %) were returned. Fifty-one per cent of respondents were male and the mean age of respondents was 65.6 years±11.3 SD. The most common cancer types amongst respondents were breast (28.3 %) and prostate (25.2 %), and 38.8 % were treated with chemotherapy alone or chemotherapy alongside another cancer treatment. There were no significant differences in age between study responders (mean 65.33 years±11.35 SD) and nonresponders (mean 65.82 years±11.47 SD). The demographic characteristics of the respondents were representative of cancer patients in the West Midlands [43]. A more comprehensive breakdown of these characteristics has been reported on elsewhere [9] and has been detailed in Table 2. EQ-VAS and its relation to SM uptake A significant, weak positive association was found between SM uptake and EQ-VAS scores (r=+0.138, p=0.004), with respondents with higher SM uptake having higher EQ-VAS scores. However, using multi-linear regression, we discovered that EQVAS scores were not significantly associated with SM uptake scores either when entered into the regression model alone (p= 0.061), in combination with HLC (p=0.108) or when the other socio-demographic variables were entered into the model (p= 0.186). As a result, we decided to focus our regression analysis model on internal HLC in relation SM uptake.

Table 2

Demographic characteristics of participants

Demographic

All respondents, N=445 %=100n/N n (%)

Gender, n (%)

Male Female Age, n (%) ≤65 years ≥66 years Ethnicity, n (%) White Black Asian Other Income, n (%)

A survey investigating the associations between self-management practices and quality of life in cancer survivors.

To explore whether the use of self-management (SM) practices in cancer survivors impact on their health beliefs and quality of life (QoL). This is an ...
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