Chapter 27: Living with and beyond cancer
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Cancer‐related fatigue
Definitions
CRF is a distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportionate to recent activity and interferes with usual functioning (DH [187]). This differs from excessive tiredness which is a common complaint of today's society, some level being found in almost all of the population (Ogilvy et al. [213]).
Presenting symptoms
CRF impacts on a person's ability to function and is not completely improved with rest or sleep (DH [187]). It may present as significant fatigue, depressed mood and reduced quality of life (Barsevick et al. [12], Bjorneklett et al. [17], Courtier et al. [61]).
CRF is a relentless exhaustion and lack of energy that prevents patients from taking part in everyday activities that they previously managed independently (Chan et al. [44]). CRF may also result in insomnia or disturbed sleep patterns, cognitive deficits, memory difficulties, reduced attention and concentration.
Related theory
Although patients report that CRF is not relieved by sleep, sleep is important to patients’ quality of life and their tolerance to treatment (Ancoli‐Israel et al. [7]). Psychological well‐being may also be affected with impatience and mood swings (Cooper and Kite [55]). CRF can develop into a chronic condition, persisting for months to years after cancer treatment has finished. Various factors can affect sleep such as the biochemical changes associated with the process of neoplastic growth and anticancer treatments (Roscoe et al. [241]).
CRF is multifactorial. It can be caused by cancer treatment such as chemotherapy, radiotherapy, biological therapy and surgery. Side‐effects such as poor nutrition, low mood, anxiety, memory difficulties, poor sleep and the medication patients need to take all contribute to CRF. Comprehensive assessment of people experiencing CRF should be completed to identify and treat reversible causes and offer person‐centred care. The complex web of possible causes of CRF means that effective treatment is a challenge for cancer care providers (NCI [184]).
Evidence‐based approaches
Rationale
The Survivorship movement states that cancer patients are living life beyond cancer, and palliative patients require support in living active meaningful lives with as much urgency as all other cancer survivors (Hwang et al. [127], NCSI [186]). Assessment and provision of individually tailored exercise and physical activity programmes are recommended for CRF (Cancer Research UK [39], LCA [148], DH [187], NCSI [186]).
In combination with physical activity, the individual patient's CRF requires assessment for management of energy conservation (Cooper and Kite [55], LCA [148]). Simple techniques such as those outlined in Procedure guideline 27.21 may be indicated.
Indications
Aerobic exercise can make a statistically significant improvement in CRF for patients who are undergoing or have completed treatment for cancerous solid tumours (Cramp and Byron‐Daniel [62]). Physical activity is recommended for patients with prostate, breast and colon cancer and those having treatment with radiotherapy, chemotherapy and stem cell transplant (Mitchell et al. [176]).
Contraindications
Research has been unable to identify any pattern of physical activity modalities, frequency or intensity of exercise or the best time in the patient's treatment pathway to introduce exercise and physical activity for CRF (Mitchell et al. [176]). No clear theme has emerged regarding specific activities that are beneficial to patients and the longitudinal benefits of exercise for patients with CRF (Cramp and Byron‐Daniel [62]). This reinforces the necessity for individual assessment, monitoring and review (Cooper and Kite [55]).
Principles of care
Although there is no uniform solution to this complex problem, fatigue management requires an approach which involves thorough assessment to establish the causes, whether any prescribed medication can help or is, indeed, contributing to the fatigue (LCA [148]), and to establish the optimum programme to support the patient with regular reviews (Lowrie [152]). Education and counselling are required to ensure patient engagement and involvement in the management of CRF (DH [187]).
With prolonged insomnia, a skilled practitioner in CRF needs to carry out a programme of fatigue management and may use an outcome measure such as Functional Assessment of Chronic Illness Therapy– Fatigue (FACIT‐F) (Gascon et al. [110]). There is a good correlation between the FACIT fatigue and Fatigue Severity Scale (FSS) scores (Cella et al. [43]). FACIT‐F consists of five experience and eight impact questions. Practically speaking, this implies that fatigue as an outcome can be expressed as a single number, and the experience of the symptom is more likely to be endorsed at mild levels of fatigue, presumably before the symptom exerts an adverse impact upon function (Cella et al. [43]).
The principles of CRF management include advising the patient to take gentle but regular exercise to increase the heart rate but not cause even worse fatigue. The person must establish their own exercise tolerance and routine as individuals will differ. Similarly, the individual needs to establish their own dietary boundaries, including whether a hot milky drink at bedtime helps with sleep.
Legal and professional issues
- Clear and accurate records relevant to the clinician's practice must always be kept, without falsification. Immediate and appropriate action must be taken if this is not carried out.
- Any risks or problems must be identified as they arise and the steps taken to deal with them recorded.
- Any record must be clearly dated, timed and attributable to the person making the entry.
- Any legal requirements must be met regarding appropriate data sharing and data confidentiality in record keeping (NMC [202]).
Pre‐procedural considerations
Assessment tools
An assessment tool such as the FSS (Figure 27.33) may be used to identify key areas of daily life on which the fatigue is having an impact. This concise scale can be filled in again by the patient later to compare how they are coping. It has a reliability which falls within acceptable ranges, its precision and clinically important change estimates provide guidelines for interpreting change in scores from these outcomes in clinical research of intervention and rehabilitation approaches for managing fatigue. The analysis of construct validity further established the meaningful interpretation of the FSS, the scale is simple, economical and efficient at capturing the severity and impact of fatigue in, primarily the physical nature of fatigue (Learmouth et al. [143]).
Procedure guideline 27.21
Fatigue management
Table 27.21 Prevention and resolution (Procedure guideline 27.21)
| Problem | Cause | Prevention | Action |
|---|---|---|---|
| Lack of motivation. | During treatment:
| Ensure timing of giving information. Relate advice on activity to practical tasks so that the patient can learn the advice and use it in a practical way. | Consider attending behavioural change training such as cognitive behavioural training and motivational interviewing. |
| Concurrent or pre‐existing co‐morbidities, e.g. heart disease. | Precaution/contraindications to exercise. | Ensure the patient is aware of their own limitations and restrictions. | Liaise/refer to relevant medical team. |
| Identification of new symptoms, e.g. dizziness or red flags. | Physiological changes as a result of increased energy expenditure. | Screen for any physiological changes or red flags through questioning. | Refer to urgent medical review. |
Exacerbation of existing symptoms such as fatigue or anxiety. | Exercising at too intensive a level.
Incorrect form of exercise. | Reduce level of intensiveness.
Modify exercise type. | If ongoing problem, contact medical team for review. |
| Risk of falls. | Poor balance, exercise too difficult.
Too fatigued to tolerate exercise. | Screen for balance problems through questioning and observation.
Encourage supportive footwear.
Consider advice to be given on types of exercises. | Request medical review.
Consider referral to local community falls team. |
| Lack of resources for onward referral. | No national standard care of exercise provision/resources. | Online resources such as Macmillan Cancer Support or specific cancer charities, e.g. PCUK/Breast. |
Figure 27.33 The Fatigue Severity Scale (FSS) and Visual Analogue Fatigue Scale (VAFS). Source: Learmouth et al. [143]. Reproduced with permission of Elsevier.
Box 27.10
The five Ps
- Prioritize: Consider which activities are important to you each day, and prioritize which activities you would like to conserve your energy for. Try to cut out unnecessary tasks to conserve your energy.
- Plan: Organize your activities as effectively as possible to conserve as much energy as you can. Consider which times of the day are best for you to be active or at rest. Try not to do too much in any one day, and plan your activities for the week ahead as much as possible.
- Pace: It is important to balance periods of activity with periods of rest. You may need to rest during an activity and allow yourself a little extra time to get things done.
- Position: Work out a position that is comfortable for you when you feel breathless and practise this so that you can help yourself. Think about your posture and try to maintain this so that you avoid becoming uncomfortable and conserve your energy.
- Permission: Give yourself permission not to do activities that result in you becoming breathless and tired. Instead of thinking along the lines of ‘I must’, ‘I ought’, try and change the way you think about things and say to yourself ‘I choose to do ….’ ‘I wish to do ….’ instead.
Post‐procedural considerations
Immediate care
Psychological issues may occur affecting quality of life due to ongoing fatigue. These should be addressed by acknowledging this symptom and encouraging the use of fatigue management and energy conservation techniques as described in Box 27.10 (i.e. prioritizing, planning, pacing, posture and permission).
Ongoing care
Ongoing issues relating to fatigue require review of the techniques as described above.
Documentation
Any written advice should be documented in the individual's medical notes.
Education of patient and relevant others
The advice given in Procedure guideline 27.21 can be provided to the patient and their relevant others.
Complications
No complications would be anticipated.
