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Helping Patients to Help Themselves after Breast Cancer Treatment
Clinical Oncology xxx (2015) 1e7 Contents lists available at ScienceDirect
Clinical Oncology journal homepage: www.clinicaloncologyonline.net
Overview
Helping Patients to Help Themselves after Breast Cancer Treatment D.R. Fenlon *, P. Khambhaita *, M.S. Hunter y * University y
of Southampton, Southampton, UK King’s College London, UK
Received 1 April 2015; accepted 11 May 2015
Abstract There is a rise in the number of women living with the long-term consequences of cancer and continuing to suffer unmet need as breast cancer survival improves. This paper includes an introduction to self-management and a discussion of the evidence around the effectiveness of the key intervention types that could help patients to help themselves after treatment. Self-management interventions are particularly beneficial in reducing bother from symptoms, without patients having to take on the additional burden of more unwanted side-effects frequently seen with pharmacological interventions. There is a need to prioritise the funding of these financially viable self-management strategies to ensure equity of access and that these interventions are available for those in need. Ó 2015 Published by Elsevier Ltd on behalf of The Royal College of Radiologists.
Key words: Cancer survivors; confidence; self-efficacy; self-management
Statement of Search Strategies Used and Sources of Information The search strategies used and sources of information are in line with this being an overview paper.
Introduction As survival from breast cancer improves, there is a corresponding rise in the number of women living with the long-term consequences of cancer [1]. These can be physical and functional or psychosocial and may have a significant effect on women’s lives. They include joint pain [2], fatigue [3], sexual problems [4], cognitive problems [5], anxiety [6], fear of recurrence [1], lymphoedema [7] and vasomotor symptoms [8]. Many can be a serious problem, having a significant effect on daily life: physically, psychologically and socially [9]. The consequences of living with and managing breast cancer can affect relationships, social activities and work
Author for correspondence: P. Khambhaita, University of Southampton, Southampton, UK. E-mail address: [email protected] (P. Khambhaita).
[10]. As a consequence of cancer and the imposition of this range of iatrogenic conditions, people experience a biographical disruption. Disruptions in biography include changes to social relationships and the structures of everyday life [11]. Therefore, women’s needs at the end of cancer treatment often include a focus on more existential concerns, such as reflecting on what they have experienced, feelings of loss and the pursuit of restoration of a ‘normal’ way of life [12]. There is evidence of effective interventions, yet there is a lack of consistent provision of these interventions due to changes in follow-up care being passed from secondary to primary health care providers [13]. Furthermore, current patient follow-up tends to adopt a biomedical model, which may not adequately address psychological and social concerns [12]. Without this kind of support, many women with breast cancer turn to complementary and alternative medicines, and search for other non-pharmacological strategies, particularly to help with hot flushes or fatigue [14]. There is evidence that people want to help themselves and have a preference to do this using non-medical approaches, as well as an emerging evidence base for supported selfmanagement [15,16]. Feedback from people who have had cancer has highlighted a call for more support from clinicians so that they can facilitate their own self-care [17]. It is
http://dx.doi.org/10.1016/j.clon.2015.05.002 0936-6555/Ó 2015 Published by Elsevier Ltd on behalf of The Royal College of Radiologists.
Please cite this article in press as: Fenlon DR, et al., Helping Patients to Help Themselves after Breast Cancer Treatment, Clinical Oncology (2015), http://dx.doi.org/10.1016/j.clon.2015.05.002
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timely, therefore, to explore self-management. Here we explore the evidence around a variety of interventions that have been shown to help in the self-management of cancerrelated problems.
efficacy for particular tasks. The identification of low selfefficacy in specific behaviours could facilitate targeted support.
Interventions to Support Self-management Self-management Self-management has been identified as an important way of managing the burden of long-term health conditions [18]. It entails patients and families being given support to manage their own health [19]. There is a need for support to facilitate self-management strategies to enable women at the end of treatment to process what has happened and move on. Enabling people to self-manage their aftercare can help patients benefit from an enhanced ability to effect change [20]. Patients have identified a need for strategies to do this [12]. These strategies include complementary therapies, psychological interventions, diet, nutrition and exercise [12]. Self-management support is what health services can offer to encourage people living with long-term conditions to improve or maintain their health [17]. Fenlon and Foster [21] presented an adapted definition of self-management support specifically in relation to cancer. It can be understood as (i) a portfolio of techniques and tools and (ii) as a transformation of the patientecaregiver relationship into a collaborative partnership. In the case of cancer, the selfmanagement goals for survivors include health promotion and managing the long-term effects of disease and treatment [21]. Foster and Fenlon [22] applied Lent’s [23] model of restorative emotional well-being to a conceptual framework to inform areas of self-management support to facilitate the recovery of people after cancer treatment. Lent’s model has been expanded to include wider domains that could affect health recovery. The model shows that a number of factors, including the perception of problems as well as demographic factors, influence how disruptive cancer and its treatment are. There is a process of appraising the situation (coping appraisal) and appraisal of cancerrelated self-efficacy (confidence) to manage the situation. How a survivor appraises the situation and how equipped they feel to deal with it are influenced by factors like selfefficacy, personality and environmental factors. Foster and Fenlon [22] hypothesised that appropriate and specific support designed to help survivors feel more confident to manage cancer-related problems can facilitate a more rapid recovery. Foster et al. [24] conducted a cross-sectional online survey to assess perceived self-efficacy to manage problems in the 12 months after cancer treatment. The results showed that levels of self-efficacy varied between individuals and according to specific tasks. Although survey respondents were most confident in accessing information, they were least confident in managing fatigue. This highlights the importance of considering variation in self-efficacy. Domain-specific cancer-related self-efficacy measures will probably be valuable for identifying survivors who lack self-
Interventions take many forms and can be delivered in different ways. They include programmes specifically targeted at increasing people’s ability to self-manage or training in specific techniques. Examples include coaching, relaxation, cognitive behavioural therapy (CBT), mindfulness and self-delivered acupuncture. Programmes such as the Expert Patient Programme [25], Taking CHARGE [20], RESTORE [26], PRO-SELF [27] often build on behavioural techniques, such as CBT or relaxation. These interventions can be delivered online, through one to one support and group support. For example, the Taking CHARGE intervention included group and telephone sessions, whereas the RESTORE intervention for fatigue in survivors was entirely delivered online without any one to one support. The Expert Patient Programme is a central element of chronic disease management policy in the UK aiming to deliver self-management support and improve the quality of life of people with long-term conditions by developing generic self-management skills to take more control over their illnesses [25]. This was used as the basis for a cancerspecific expert patient programme led by the UK charity Macmillan Cancer Support, although the evidence for the benefit of this programme is unclear. Taking CHARGE is an intervention developed to facilitate successful transitions to survivorship after breast cancer treatment [20]. This particular self-management intervention was designed on the basis of social cognitive theory through self-regulation principles. These included equipping survivors with skills to address concerns and construct an understanding of their experience of illness to guide selfcare. The intervention consisted of a blended delivery approach, which involved group sessions (peer support) and individual telephone sessions (individualised education). The content covered psychological well-being, managing symptoms and achieving functional wellness. Participants can use processes of self-regulation to prevent, identify and resolve problems. This process has also been successfully applied in interventions for women who have experienced illnesses other than cancer [20]. These group-based programmes can be resource intensive and inaccessible. There is therefore a need for evidence-based support tools to be delivered in different ways. The use of the internet as an important source for support is increasing. The RESTORE intervention is a first in terms of online exploratory randomised controlled trials, designed to support the self-management of cancer-related fatigue. Participants included 125 cancer survivors experiencing fatigue within 5 years of primary treatment completion with curative intent. The results from this study are yet to be published. The authors hope that the pilot nature of the study will allow for refinement of the intervention and also provide information on whether a mostly
Please cite this article in press as: Fenlon DR, et al., Helping Patients to Help Themselves after Breast Cancer Treatment, Clinical Oncology (2015), http://dx.doi.org/10.1016/j.clon.2015.05.002
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older population of cancer survivors is accepting of an online-based intervention such as RESTORE [26]. The intervention is based on the principles of selfefficacy theory and includes components and behavioural techniques designed to enhance self-efficacy to self-manage the effect of fatigue. This in turn influences the perception of fatigue [26,28]. The intervention had five sessions, where sessions 1 and 2 included an introduction to fatigue and goal setting. Sessions 3e5 were designed to cover areas of life where fatigue might have an effect and could be tailored to user preference. These life domains include home, work and emotional adjustment [28].
Coaching Life coaching services can support women at the end of treatment to adapt and move forward [12]. Coaching is based on social cognitive theory, where self-efficacy is viewed as essential to human agency [29]. Agency relates to the capacity of a person to have a role to play in shaping their actions [30]. Coaching involves facilitating people to nurture their natural resources to meet life challenges and pursue self-selected goals. It can be used to increase selfconfidence to manage a wide range of problems and is appropriate for cancer survivors who have a range of needs to self-manage [29]. The results from a phenomenological mixed methods exploration of holistic life coaching for breast cancer survivors showed that participants reported coaching to be a valuable experience [31]. Life coaching can potentially enable survivors to manage transitions to life beyond cancer. The results from a feasibility study designed to rebuild confidence and support transition to life after treatment indicate positive results. Working through the process of identifying goals, determining paths and progressing towards goal achievement increased both self-confidence and self-esteem [29]. Although coaching offers people a personalised tailored intervention, it is resource intensive, requiring one to one support. This may not be possible to deliver within a health care setting that needs to distribute resources over a large population.
Relaxation Relaxation training is one of the most clinically used interventions. It can reduce the anxiety level of patients and improve their treatment-related symptoms. Techniques are relatively simple to learn and commonly readily accepted by the patient [32]. Relaxation therapy has been shown to be of benefit in many areas in cancer care, improving physical and psychological health, resulting in improvements in quality of life [33]. The use of relaxation during treatment can make the experience less stressful. It is a skill that can give patients a feeling of mastery over their problems. It has previously been used to help in the control of anticipatory pre-chemotherapy nausea [34]. Although targeted at improving mood, there are also many associated
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physical effects. Specific uses have been to improve cancerrelated pain [35], reducing adverse reactions to chemotherapy [36] and incidence and distress caused by hot flushes and night sweats [14]. A meta-analysis showed significant positive effects for nausea, blood pressure, pulse rate and on the emotional adjustment variables of depression, anxiety and hostility [32]. Additionally, two studies point to a significant effect of relaxation on the reduction of tension and amelioration of overall mood [32]. Luebbert et al. [32] found the evidence so strong for the benefit of relaxation training that they recommended it as clinical routine for cancer patients in acute medical treatment. Although not routinely seen in many care settings, relaxation training is commonly incorporated into CBT and other support programmes. Relaxation training can also be incorporated in less resource-intensive settings. For example, the study by Fenlon et al. [14] only used one faceto-face half an hour intervention followed up by personal practice. Internet-delivered relaxation therapies have been shown to have promising results for various health problems. Lindh- Astrand et al.’s [37] work was a preliminary study of internet-delivered applied relaxation for hot flushes in postmenopausal well women. The study was terminated prematurely due to a high dropout rate and the authors argued that applied relaxation therapy delivered through the internet will need to be modified before it can be used further. The authors highlighted the lack of a pilot study to test the user friendliness of the intervention and need for support from a therapist as lessons learnt.
Cognitive Behavioural Therapy CBT is a collaborative psychological intervention that focuses on helping people to understand the links between thoughts (cognitions), emotions, physical reactions and behaviours. There is evidence that CBT can reduce distress, anxiety [38,39], fatigue [40], insomnia [41] and increase physical activity and quality of life [42]. A recently conducted gap analysis of UK breast cancer research highlighted the need for the development of effective theory-based interventions for treatment-related symptoms, with analysis of moderators and mediators [10]. Hot flushes and night sweats are some of the most troublesome treatment side-effects reported by breast cancer survivors [15]. Based on a cognitive model of hot flushes [43], Hunter and colleagues developed a group CBT intervention for menopausal symptoms, i.e. brief (four to six sessions), interactive and psycho-educational, with a focus on helping people to develop strategies to reduce stress, apply paced breathing and cognitive and behavioural strategies [44,45] to manage the hot flushes, night sweats and sleep. A treatment manual has been published, including presentation slides and handouts [46]. Two randomised controlled trials of group CBT have been conducted for women who have hot flushes after breast cancer treatment [47,48] and for well women [49]. The results of these trials consistently
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show that CBT interventions are effective in reducing the effect, or problem rating (Hot Flush Rating Scale) [50] of hot flushes and night sweats, and have additional benefits to quality of life. In MENOS2 [49], group and self-help interventions [45] were equally effective in reducing how problematic hot flushes were rated, but group CBT had more additional effects on mood and quality of life. A study of moderators and mediators suggests that CBT is widely applicable for breast cancer patients who are experiencing treatment-related menopausal symptoms. CBT works mainly by changing beliefs about hot flushes, and improving mood and sleep [51]. These results are supported by those of a qualitative study based on interviews with women who had CBT in the MENOS1 trial [52]. The women reported that CBT improved their ability to cope with their symptoms and that they ‘regained a sense of control’, which is consistent with the findings that changes in beliefs about hot flushes mediate improvements in symptom experience. CBT is becoming integrated into clinical practice and there is a need to consider how CBT can be better integrated to widen access. For example, a guided self-help CBT intervention has recently been developed for prostate cancer patients who have hot flushes associated with androgen deprivation therapy and has been found to have a significant effect on hot flushes [53]. CBT normally requires face-to-face input by a trained professional, but can successfully be delivered in groups [47,48], thus making it relatively cost-effective, and there is some evidence that self-help versions have some benefit [54].
Mindfulness Mindfulness-based stress reduction is rooted in the contemplative spiritual traditions in which the conscious awareness experience is nurtured. Within a non-judgement and acceptance framework, meditative practice often centres awareness on one’s own breathing, which typically leads to relaxation [55]. Mindfulness meditation training focuses on self-regulation of emotions, emphasising a moment-to-moment, non-judgemental and non-reactive awareness to experiences, thus reducing rumination of distressful experiences, intrusive thoughts [56,57], including fear of recurrence [58]. Living in the moment has particular meaning for many cancer patients who are anxious about both past lifestyle and future illness [59]. Coffey and Hartman [60] conducted a study to investigate three specific mindfulness mechanisms. These included emotion regulation, non-attachment and reduced rumination. They collected data from two independent, non-clinical samples and then used structural equation modelling to test the role of these mechanisms in mediating the relationship between mindfulness and a psychological distress factor. The results highlighted an inverse relationship between mindfulness and psychological distress and the analysis showed that emotion regulation, nonattachment and rumination significantly mediated this relationship. Mindfulness approaches have a great deal of potential in cancer care at different stages of illness [58].
Mindfulness includes both formal and informal meditation practices. Mindfulness-based stress reduction is the mindfulness intervention most studied in the field of cancer care. There is evidence to suggest that mindfulness-based interventions in cancer care have resulted in significant improvements in psychological symptoms of anxiety and stress as well as depression and sexual difficulties [59]. Results from an 8 week mindfulness-based stress reduction meditation programme for early stage breast and prostate cancer patients indicated effectiveness in decreasing symptoms of stress and improving sleep quality. In addition to improvements in sleep quality and stress, it has also been shown that mindfulness meditation has statistically significant clinical benefits for other areas of functioning, including menopausal problems [61], mood disturbance and fatigue [62]. Early work has also shown that this kind of intervention has particular benefits for people with metastatic disease where fatigue, anxiety and depression are particular problems [63,64]. Similar to CBT, mindfulness training is usually delivered in groups by a trained professional. Although the traditional form is an 8 week programme, including some personal practice, there are studies ongoing that are exploring shorter and alternative formats to make mindfulness more accessible [65].
Acupuncture Acupuncture is a needling therapy and can be taught to people to self-needle. It works on nerves that stimulate the secretion of numerous therapeutic endogenous molecules (e.g. endorphins, serotonin, oxytocin, adenosine) and has widespread autonomic effects [66,67]. A meta-analysis on 17 922 non-cancer patients highlighted its superiority over sham acupuncture and no acupuncture controls for back, shoulder and neck pain, osteoarthritis and chronic headache [66]. It has an increasing evidence base in cancer patients, both for pain and non-pain symptoms, such as vomiting, fatigue, hot flushes, xerostomia and cancer-related dyspnoea. Patients are increasingly taught simple self-needling techniques for maintenance purposes after an initial course of treatment, e.g. for hot flushes for up to 6 years after treatment and for chemotherapy-related fatigue [68,69]. Many clinical studies have short follow-up times, but symptoms such as hot flushes can be long lasting and cause patients to stop treatment. Self-treatment is empowering and acceptable for patients. As budgets become squeezed, self-treatment for maintenance purposes is one possible way to deliver relief with a reduced need for follow-up treatments.
Discussion One of the 10 major critical research gaps in breast cancer is the development of interventions and support to improve the survivorship experience [10]. From evaluating
Please cite this article in press as: Fenlon DR, et al., Helping Patients to Help Themselves after Breast Cancer Treatment, Clinical Oncology (2015), http://dx.doi.org/10.1016/j.clon.2015.05.002
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existing literature on key types of self-management intervention, it is evident that at the core of these nonpharmacological interventions is an emphasis on exploring thoughts and beliefs, experiences of illness and developing personal strength. These types of intervention are effective as they enable cognitive appraisal and facilitate survivors to adapt and move forward while improving quality of life. Researchers are increasingly concentrating on the mechanisms through which interventions exert beneficial effects and positively influence on well-being. A more robust understanding of the mediators of the selfmanagement interventions discussed in this paper can contribute to more tailored and beneficial interventions. A key factor to consider is the way in which troubling symptoms are measured and what outcomes are monitored for people post-cancer. For example, although the incidence of hot flushes may be reduced by interventions such as relaxation, mindfulness or CBT, this is frequently not as dramatic as the reduction seen with medications such as hormone replacement therapy or Selective serotonin re-uptake inhibitors (SSRIs) (such as venlafaxine). However, what may be of more importance to the individual is not the incidence of flushes so much as the effect on everyday life and the extent to which flushes bother people. Self-management interventions have been shown to be particularly beneficial in reducing bother from symptoms, without taking on the additional burden of other unwanted side-effects frequently seen with pharmacological interventions. Studies that explore the use of interventions to relieve suffering from symptoms need to have outcomes that include harms as well as benefits and to explore the effect on people’s lives as a more relevant outcome than mere incidence. There is a clear need to ensure that more women have access to methods that work for them, i.e. specific type/s of non-pharmacological method/s. Furthermore, specifically, we call for an exploration of (i) how particular types of costeffective intervention are more appropriate, suitable and effective for different patient subgroups and (ii) the study of the potential to adapt existing interventions for the successful management of different cancer-related problems [25]. For example, there is evidence for the potential for an online-based intervention to be effective in supporting the management of fatigue-related problems as experienced by a predominantly older population of cancer survivors [70]. Ultimately, there will be a need to provide support for self-management interventions in many ways. Although there is a growing body of evidence to support the benefit of these interventions, there is still little access provided through current health care systems. Future studies should include not only evidence of the effectiveness of interventions, but incorporate strategies and provide data for how the interventions can be embedded into clinical practice so that they are widely available.
Conclusion Here we introduced self-management and discussed the evidence around the effectiveness of the key types of
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interventions that could help patients to help themselves after cancer treatment. There is considerable evidence for increased support for self-management. These interventions are financially viable and are probably associated with less harm than pharmacological interventions. Self-management interventions are relatively costeffective compared with the prescription of drugs to counteract physical and psychological symptoms [71]. Furthermore, the National Health Service could explore finding ways to work with charitable organisations that can offer some of the interventions discussed here. However, there is an inconsistency between policies that promote self-management and the way in which they are implemented [18]. It is unlikely that one type of intervention, or one kind of delivery, will be appropriate for all. There is a need then to develop a variety of options to suit varying needs. Furthermore, there is a need for commissioners of health care to prioritise the funding of selfmanagement strategies to ensure equity of access and to ensure that they are available for those in need.
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Overview
Helping Patients to Help Themselves after Breast Cancer Treatment D.R. Fenlon *, P. Khambhaita *, M.S. Hunter y * University y
of Southampton, Southampton, UK King’s College London, UK
Received 1 April 2015; accepted 11 May 2015
Abstract There is a rise in the number of women living with the long-term consequences of cancer and continuing to suffer unmet need as breast cancer survival improves. This paper includes an introduction to self-management and a discussion of the evidence around the effectiveness of the key intervention types that could help patients to help themselves after treatment. Self-management interventions are particularly beneficial in reducing bother from symptoms, without patients having to take on the additional burden of more unwanted side-effects frequently seen with pharmacological interventions. There is a need to prioritise the funding of these financially viable self-management strategies to ensure equity of access and that these interventions are available for those in need. Ó 2015 Published by Elsevier Ltd on behalf of The Royal College of Radiologists.
Key words: Cancer survivors; confidence; self-efficacy; self-management
Statement of Search Strategies Used and Sources of Information The search strategies used and sources of information are in line with this being an overview paper.
Introduction As survival from breast cancer improves, there is a corresponding rise in the number of women living with the long-term consequences of cancer [1]. These can be physical and functional or psychosocial and may have a significant effect on women’s lives. They include joint pain [2], fatigue [3], sexual problems [4], cognitive problems [5], anxiety [6], fear of recurrence [1], lymphoedema [7] and vasomotor symptoms [8]. Many can be a serious problem, having a significant effect on daily life: physically, psychologically and socially [9]. The consequences of living with and managing breast cancer can affect relationships, social activities and work
Author for correspondence: P. Khambhaita, University of Southampton, Southampton, UK. E-mail address: [email protected] (P. Khambhaita).
[10]. As a consequence of cancer and the imposition of this range of iatrogenic conditions, people experience a biographical disruption. Disruptions in biography include changes to social relationships and the structures of everyday life [11]. Therefore, women’s needs at the end of cancer treatment often include a focus on more existential concerns, such as reflecting on what they have experienced, feelings of loss and the pursuit of restoration of a ‘normal’ way of life [12]. There is evidence of effective interventions, yet there is a lack of consistent provision of these interventions due to changes in follow-up care being passed from secondary to primary health care providers [13]. Furthermore, current patient follow-up tends to adopt a biomedical model, which may not adequately address psychological and social concerns [12]. Without this kind of support, many women with breast cancer turn to complementary and alternative medicines, and search for other non-pharmacological strategies, particularly to help with hot flushes or fatigue [14]. There is evidence that people want to help themselves and have a preference to do this using non-medical approaches, as well as an emerging evidence base for supported selfmanagement [15,16]. Feedback from people who have had cancer has highlighted a call for more support from clinicians so that they can facilitate their own self-care [17]. It is
http://dx.doi.org/10.1016/j.clon.2015.05.002 0936-6555/Ó 2015 Published by Elsevier Ltd on behalf of The Royal College of Radiologists.
Please cite this article in press as: Fenlon DR, et al., Helping Patients to Help Themselves after Breast Cancer Treatment, Clinical Oncology (2015), http://dx.doi.org/10.1016/j.clon.2015.05.002
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timely, therefore, to explore self-management. Here we explore the evidence around a variety of interventions that have been shown to help in the self-management of cancerrelated problems.
efficacy for particular tasks. The identification of low selfefficacy in specific behaviours could facilitate targeted support.
Interventions to Support Self-management Self-management Self-management has been identified as an important way of managing the burden of long-term health conditions [18]. It entails patients and families being given support to manage their own health [19]. There is a need for support to facilitate self-management strategies to enable women at the end of treatment to process what has happened and move on. Enabling people to self-manage their aftercare can help patients benefit from an enhanced ability to effect change [20]. Patients have identified a need for strategies to do this [12]. These strategies include complementary therapies, psychological interventions, diet, nutrition and exercise [12]. Self-management support is what health services can offer to encourage people living with long-term conditions to improve or maintain their health [17]. Fenlon and Foster [21] presented an adapted definition of self-management support specifically in relation to cancer. It can be understood as (i) a portfolio of techniques and tools and (ii) as a transformation of the patientecaregiver relationship into a collaborative partnership. In the case of cancer, the selfmanagement goals for survivors include health promotion and managing the long-term effects of disease and treatment [21]. Foster and Fenlon [22] applied Lent’s [23] model of restorative emotional well-being to a conceptual framework to inform areas of self-management support to facilitate the recovery of people after cancer treatment. Lent’s model has been expanded to include wider domains that could affect health recovery. The model shows that a number of factors, including the perception of problems as well as demographic factors, influence how disruptive cancer and its treatment are. There is a process of appraising the situation (coping appraisal) and appraisal of cancerrelated self-efficacy (confidence) to manage the situation. How a survivor appraises the situation and how equipped they feel to deal with it are influenced by factors like selfefficacy, personality and environmental factors. Foster and Fenlon [22] hypothesised that appropriate and specific support designed to help survivors feel more confident to manage cancer-related problems can facilitate a more rapid recovery. Foster et al. [24] conducted a cross-sectional online survey to assess perceived self-efficacy to manage problems in the 12 months after cancer treatment. The results showed that levels of self-efficacy varied between individuals and according to specific tasks. Although survey respondents were most confident in accessing information, they were least confident in managing fatigue. This highlights the importance of considering variation in self-efficacy. Domain-specific cancer-related self-efficacy measures will probably be valuable for identifying survivors who lack self-
Interventions take many forms and can be delivered in different ways. They include programmes specifically targeted at increasing people’s ability to self-manage or training in specific techniques. Examples include coaching, relaxation, cognitive behavioural therapy (CBT), mindfulness and self-delivered acupuncture. Programmes such as the Expert Patient Programme [25], Taking CHARGE [20], RESTORE [26], PRO-SELF [27] often build on behavioural techniques, such as CBT or relaxation. These interventions can be delivered online, through one to one support and group support. For example, the Taking CHARGE intervention included group and telephone sessions, whereas the RESTORE intervention for fatigue in survivors was entirely delivered online without any one to one support. The Expert Patient Programme is a central element of chronic disease management policy in the UK aiming to deliver self-management support and improve the quality of life of people with long-term conditions by developing generic self-management skills to take more control over their illnesses [25]. This was used as the basis for a cancerspecific expert patient programme led by the UK charity Macmillan Cancer Support, although the evidence for the benefit of this programme is unclear. Taking CHARGE is an intervention developed to facilitate successful transitions to survivorship after breast cancer treatment [20]. This particular self-management intervention was designed on the basis of social cognitive theory through self-regulation principles. These included equipping survivors with skills to address concerns and construct an understanding of their experience of illness to guide selfcare. The intervention consisted of a blended delivery approach, which involved group sessions (peer support) and individual telephone sessions (individualised education). The content covered psychological well-being, managing symptoms and achieving functional wellness. Participants can use processes of self-regulation to prevent, identify and resolve problems. This process has also been successfully applied in interventions for women who have experienced illnesses other than cancer [20]. These group-based programmes can be resource intensive and inaccessible. There is therefore a need for evidence-based support tools to be delivered in different ways. The use of the internet as an important source for support is increasing. The RESTORE intervention is a first in terms of online exploratory randomised controlled trials, designed to support the self-management of cancer-related fatigue. Participants included 125 cancer survivors experiencing fatigue within 5 years of primary treatment completion with curative intent. The results from this study are yet to be published. The authors hope that the pilot nature of the study will allow for refinement of the intervention and also provide information on whether a mostly
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older population of cancer survivors is accepting of an online-based intervention such as RESTORE [26]. The intervention is based on the principles of selfefficacy theory and includes components and behavioural techniques designed to enhance self-efficacy to self-manage the effect of fatigue. This in turn influences the perception of fatigue [26,28]. The intervention had five sessions, where sessions 1 and 2 included an introduction to fatigue and goal setting. Sessions 3e5 were designed to cover areas of life where fatigue might have an effect and could be tailored to user preference. These life domains include home, work and emotional adjustment [28].
Coaching Life coaching services can support women at the end of treatment to adapt and move forward [12]. Coaching is based on social cognitive theory, where self-efficacy is viewed as essential to human agency [29]. Agency relates to the capacity of a person to have a role to play in shaping their actions [30]. Coaching involves facilitating people to nurture their natural resources to meet life challenges and pursue self-selected goals. It can be used to increase selfconfidence to manage a wide range of problems and is appropriate for cancer survivors who have a range of needs to self-manage [29]. The results from a phenomenological mixed methods exploration of holistic life coaching for breast cancer survivors showed that participants reported coaching to be a valuable experience [31]. Life coaching can potentially enable survivors to manage transitions to life beyond cancer. The results from a feasibility study designed to rebuild confidence and support transition to life after treatment indicate positive results. Working through the process of identifying goals, determining paths and progressing towards goal achievement increased both self-confidence and self-esteem [29]. Although coaching offers people a personalised tailored intervention, it is resource intensive, requiring one to one support. This may not be possible to deliver within a health care setting that needs to distribute resources over a large population.
Relaxation Relaxation training is one of the most clinically used interventions. It can reduce the anxiety level of patients and improve their treatment-related symptoms. Techniques are relatively simple to learn and commonly readily accepted by the patient [32]. Relaxation therapy has been shown to be of benefit in many areas in cancer care, improving physical and psychological health, resulting in improvements in quality of life [33]. The use of relaxation during treatment can make the experience less stressful. It is a skill that can give patients a feeling of mastery over their problems. It has previously been used to help in the control of anticipatory pre-chemotherapy nausea [34]. Although targeted at improving mood, there are also many associated
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physical effects. Specific uses have been to improve cancerrelated pain [35], reducing adverse reactions to chemotherapy [36] and incidence and distress caused by hot flushes and night sweats [14]. A meta-analysis showed significant positive effects for nausea, blood pressure, pulse rate and on the emotional adjustment variables of depression, anxiety and hostility [32]. Additionally, two studies point to a significant effect of relaxation on the reduction of tension and amelioration of overall mood [32]. Luebbert et al. [32] found the evidence so strong for the benefit of relaxation training that they recommended it as clinical routine for cancer patients in acute medical treatment. Although not routinely seen in many care settings, relaxation training is commonly incorporated into CBT and other support programmes. Relaxation training can also be incorporated in less resource-intensive settings. For example, the study by Fenlon et al. [14] only used one faceto-face half an hour intervention followed up by personal practice. Internet-delivered relaxation therapies have been shown to have promising results for various health problems. Lindh- Astrand et al.’s [37] work was a preliminary study of internet-delivered applied relaxation for hot flushes in postmenopausal well women. The study was terminated prematurely due to a high dropout rate and the authors argued that applied relaxation therapy delivered through the internet will need to be modified before it can be used further. The authors highlighted the lack of a pilot study to test the user friendliness of the intervention and need for support from a therapist as lessons learnt.
Cognitive Behavioural Therapy CBT is a collaborative psychological intervention that focuses on helping people to understand the links between thoughts (cognitions), emotions, physical reactions and behaviours. There is evidence that CBT can reduce distress, anxiety [38,39], fatigue [40], insomnia [41] and increase physical activity and quality of life [42]. A recently conducted gap analysis of UK breast cancer research highlighted the need for the development of effective theory-based interventions for treatment-related symptoms, with analysis of moderators and mediators [10]. Hot flushes and night sweats are some of the most troublesome treatment side-effects reported by breast cancer survivors [15]. Based on a cognitive model of hot flushes [43], Hunter and colleagues developed a group CBT intervention for menopausal symptoms, i.e. brief (four to six sessions), interactive and psycho-educational, with a focus on helping people to develop strategies to reduce stress, apply paced breathing and cognitive and behavioural strategies [44,45] to manage the hot flushes, night sweats and sleep. A treatment manual has been published, including presentation slides and handouts [46]. Two randomised controlled trials of group CBT have been conducted for women who have hot flushes after breast cancer treatment [47,48] and for well women [49]. The results of these trials consistently
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show that CBT interventions are effective in reducing the effect, or problem rating (Hot Flush Rating Scale) [50] of hot flushes and night sweats, and have additional benefits to quality of life. In MENOS2 [49], group and self-help interventions [45] were equally effective in reducing how problematic hot flushes were rated, but group CBT had more additional effects on mood and quality of life. A study of moderators and mediators suggests that CBT is widely applicable for breast cancer patients who are experiencing treatment-related menopausal symptoms. CBT works mainly by changing beliefs about hot flushes, and improving mood and sleep [51]. These results are supported by those of a qualitative study based on interviews with women who had CBT in the MENOS1 trial [52]. The women reported that CBT improved their ability to cope with their symptoms and that they ‘regained a sense of control’, which is consistent with the findings that changes in beliefs about hot flushes mediate improvements in symptom experience. CBT is becoming integrated into clinical practice and there is a need to consider how CBT can be better integrated to widen access. For example, a guided self-help CBT intervention has recently been developed for prostate cancer patients who have hot flushes associated with androgen deprivation therapy and has been found to have a significant effect on hot flushes [53]. CBT normally requires face-to-face input by a trained professional, but can successfully be delivered in groups [47,48], thus making it relatively cost-effective, and there is some evidence that self-help versions have some benefit [54].
Mindfulness Mindfulness-based stress reduction is rooted in the contemplative spiritual traditions in which the conscious awareness experience is nurtured. Within a non-judgement and acceptance framework, meditative practice often centres awareness on one’s own breathing, which typically leads to relaxation [55]. Mindfulness meditation training focuses on self-regulation of emotions, emphasising a moment-to-moment, non-judgemental and non-reactive awareness to experiences, thus reducing rumination of distressful experiences, intrusive thoughts [56,57], including fear of recurrence [58]. Living in the moment has particular meaning for many cancer patients who are anxious about both past lifestyle and future illness [59]. Coffey and Hartman [60] conducted a study to investigate three specific mindfulness mechanisms. These included emotion regulation, non-attachment and reduced rumination. They collected data from two independent, non-clinical samples and then used structural equation modelling to test the role of these mechanisms in mediating the relationship between mindfulness and a psychological distress factor. The results highlighted an inverse relationship between mindfulness and psychological distress and the analysis showed that emotion regulation, nonattachment and rumination significantly mediated this relationship. Mindfulness approaches have a great deal of potential in cancer care at different stages of illness [58].
Mindfulness includes both formal and informal meditation practices. Mindfulness-based stress reduction is the mindfulness intervention most studied in the field of cancer care. There is evidence to suggest that mindfulness-based interventions in cancer care have resulted in significant improvements in psychological symptoms of anxiety and stress as well as depression and sexual difficulties [59]. Results from an 8 week mindfulness-based stress reduction meditation programme for early stage breast and prostate cancer patients indicated effectiveness in decreasing symptoms of stress and improving sleep quality. In addition to improvements in sleep quality and stress, it has also been shown that mindfulness meditation has statistically significant clinical benefits for other areas of functioning, including menopausal problems [61], mood disturbance and fatigue [62]. Early work has also shown that this kind of intervention has particular benefits for people with metastatic disease where fatigue, anxiety and depression are particular problems [63,64]. Similar to CBT, mindfulness training is usually delivered in groups by a trained professional. Although the traditional form is an 8 week programme, including some personal practice, there are studies ongoing that are exploring shorter and alternative formats to make mindfulness more accessible [65].
Acupuncture Acupuncture is a needling therapy and can be taught to people to self-needle. It works on nerves that stimulate the secretion of numerous therapeutic endogenous molecules (e.g. endorphins, serotonin, oxytocin, adenosine) and has widespread autonomic effects [66,67]. A meta-analysis on 17 922 non-cancer patients highlighted its superiority over sham acupuncture and no acupuncture controls for back, shoulder and neck pain, osteoarthritis and chronic headache [66]. It has an increasing evidence base in cancer patients, both for pain and non-pain symptoms, such as vomiting, fatigue, hot flushes, xerostomia and cancer-related dyspnoea. Patients are increasingly taught simple self-needling techniques for maintenance purposes after an initial course of treatment, e.g. for hot flushes for up to 6 years after treatment and for chemotherapy-related fatigue [68,69]. Many clinical studies have short follow-up times, but symptoms such as hot flushes can be long lasting and cause patients to stop treatment. Self-treatment is empowering and acceptable for patients. As budgets become squeezed, self-treatment for maintenance purposes is one possible way to deliver relief with a reduced need for follow-up treatments.
Discussion One of the 10 major critical research gaps in breast cancer is the development of interventions and support to improve the survivorship experience [10]. From evaluating
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existing literature on key types of self-management intervention, it is evident that at the core of these nonpharmacological interventions is an emphasis on exploring thoughts and beliefs, experiences of illness and developing personal strength. These types of intervention are effective as they enable cognitive appraisal and facilitate survivors to adapt and move forward while improving quality of life. Researchers are increasingly concentrating on the mechanisms through which interventions exert beneficial effects and positively influence on well-being. A more robust understanding of the mediators of the selfmanagement interventions discussed in this paper can contribute to more tailored and beneficial interventions. A key factor to consider is the way in which troubling symptoms are measured and what outcomes are monitored for people post-cancer. For example, although the incidence of hot flushes may be reduced by interventions such as relaxation, mindfulness or CBT, this is frequently not as dramatic as the reduction seen with medications such as hormone replacement therapy or Selective serotonin re-uptake inhibitors (SSRIs) (such as venlafaxine). However, what may be of more importance to the individual is not the incidence of flushes so much as the effect on everyday life and the extent to which flushes bother people. Self-management interventions have been shown to be particularly beneficial in reducing bother from symptoms, without taking on the additional burden of other unwanted side-effects frequently seen with pharmacological interventions. Studies that explore the use of interventions to relieve suffering from symptoms need to have outcomes that include harms as well as benefits and to explore the effect on people’s lives as a more relevant outcome than mere incidence. There is a clear need to ensure that more women have access to methods that work for them, i.e. specific type/s of non-pharmacological method/s. Furthermore, specifically, we call for an exploration of (i) how particular types of costeffective intervention are more appropriate, suitable and effective for different patient subgroups and (ii) the study of the potential to adapt existing interventions for the successful management of different cancer-related problems [25]. For example, there is evidence for the potential for an online-based intervention to be effective in supporting the management of fatigue-related problems as experienced by a predominantly older population of cancer survivors [70]. Ultimately, there will be a need to provide support for self-management interventions in many ways. Although there is a growing body of evidence to support the benefit of these interventions, there is still little access provided through current health care systems. Future studies should include not only evidence of the effectiveness of interventions, but incorporate strategies and provide data for how the interventions can be embedded into clinical practice so that they are widely available.
Conclusion Here we introduced self-management and discussed the evidence around the effectiveness of the key types of
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interventions that could help patients to help themselves after cancer treatment. There is considerable evidence for increased support for self-management. These interventions are financially viable and are probably associated with less harm than pharmacological interventions. Self-management interventions are relatively costeffective compared with the prescription of drugs to counteract physical and psychological symptoms [71]. Furthermore, the National Health Service could explore finding ways to work with charitable organisations that can offer some of the interventions discussed here. However, there is an inconsistency between policies that promote self-management and the way in which they are implemented [18]. It is unlikely that one type of intervention, or one kind of delivery, will be appropriate for all. There is a need then to develop a variety of options to suit varying needs. Furthermore, there is a need for commissioners of health care to prioritise the funding of selfmanagement strategies to ensure equity of access and to ensure that they are available for those in need.
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