REVIEW

Psychosocial impact of cancer cachexia

Jane B. Hopkinson

Received: 3 March 2014 /Accepted: 26 March 2014 /Published online: 16 April 2014# Springer-Verlag Berlin Heidelberg 2014

AbstractBackground Cancer cachexia has impact on patients and theirfamily members. Patients experience loss of weight oftenaccompanied by anorexia and other debilitating symptomsthat have clinical impact and impact everyday life. The im-portance of understanding this impact lies in (1) the alleviationof cachexia-related suffering and (2) its implications fortreating cachexia.Review Two decades of exploratory investigation of the man-ifestations, meaning and management of cancer cachexia re-veal emotional and social impacts for both patients and theircarers. Patients can describe change in appearance and loss ofphysical strength often accompanied by change in eatinghabits (amount, type and pattern of food intake). The psycho-social effects can include loss of independence, sense offailure, sense of helplessness, conflict with family membersover food, social isolation and thoughts of death. They areeffects that can distress. Conversely, weight loss, especiallyearly in its course and for those who are obese, can beperceived as beneficial, which inhibits self-management ofdiet and physical activity.Conclusion Models of the psychosocial effects of cancer ca-chexia have been developed, leading to, as yet unproven,propositions of how negative patient and family impacts canbe addressed. This literature overlooks the potential impor-tance of psychosocial intervention to emerging multimodaltreatments for the multicausal syndrome. Psychosocial inter-vention in cachexia should be tested for potential to helppeople affected by cancer cachexia feel better but also forpotential to make people better by aiding uptake and compli-ance with multimodal therapy.

Keywords Cachexia . Cancer . Psychosocial effect .

Supportive care . Patient . Family

1 Introduction

This paper provides an overview of the impact of cancercachexia. Patients with cancer cachexia experience loss ofweight often accompanied by anorexia and other debilitatingsymptoms that impact everyday life.

Two decades of exploratory investigation of the manifes-tations, meaning and management of cancer cachexia revealemotional and social impacts for both patients and their familymembers. This literature provides explanations of whyproblems are experienced and, as yet unproven, propo-sitions of what can be done about problematic psycho-social effects of cachexia [1, 2]. The literature overlooksthe potential importance of psychosocial impact andintervention to treatment.

Since cachexia is multicausal, optimal management of thesyndrome is now thought likely to require multimodal treat-ment. These multimodal treatments can be offered solely forthe purpose of reducing cachexia’s clinical impact. However,there may be importance in understanding psychosocial ef-fects because of their implications for

1. Alleviating cancer cachexia-related suffering2. Improving the multimodal treatment of cancer cachexia

This review discusses patient and family impacts, the un-derstanding of what might be done to limit negative impactsand possible implications for research and clinical practice.Whilst the implications for the alleviation of cachexia-relatedsuffering have previously been discussed in the literature, theimplications for multimodal treatment have not.

J. B. Hopkinson (*)Cardiff School of Healthcare Sciences, Cardiff University, Cardiff,Wales, UKe-mail: HopkinsonJB@cardiff.ac.uk

J Cachexia Sarcopenia Muscle (2014) 5:89–94DOI 10.1007/s13539-014-0142-1

2 Clinical impact

The clinical impact of cancer cachexia has been the focus ofmost discussion and research. A brief overview will be givenhere before considering the patient and family impacts of thesyndrome.

In the case of cancer, the cachectic process is tumourinduced. It manifests itself as involuntary weight loss oftenaccompanied by anorexia and fatigue, all of which havenegative clinical impacts, including the deterioration of phys-ical function, quality of life, nutritional status and treatmentoutcomes.

Understanding the nature and management of the clinicalimpact of cancer cachexia has been hampered by a lack ofagreed definition of the syndrome. There has been progress onthis front. For example, Fearon et al. [3] provided a consensusdefinition of cachexia:

Cachexia is a complex metabolic syndrome associatedwith underlying illness and characterized by loss ofmuscle with or without loss of fat mass. The prominentclinical feature of cachexia is weight loss in adults(corrected for fluid retention) or growth failure in chil-dren (excluding endocrine disorders). Anorexia, inflam-mation, insulin resistance and increased muscle proteinbreakdown are frequently associated with wasting dis-ease. Wasting disease is distinct from starvation, age-related loss of muscle mass, primary depression, malab-sorption and hyperthyroidism and is associated withincreased morbidity.

It is important to note that cancer cachexia can be presentacross the entire course of the disease. The group of expertswho developed the definition proposed staging of the syn-drome: precachexia (where there are clinical metabolic chang-es, but less than 5 % loss of weight), cachexia (more than 5 %weight loss, but sub-groups responsive to different treatmentoptions) and refractory cachexia (irreversible catabolic can-cer). It is argued that treatment trials of the future should becachexia stage specific. This claim is based on the propositionthat early stage cachexia is more likely to be responsive totreatment resulting in meaningful clinical impacts includingimproved tolerance to cancer treatments.

Cachexia is often accompanied by malnutrition, whichexacerbates the syndrome and contributes to its progression.In addition to the cachectic process, nutritional impact symp-toms such as pain and nausea contribute to the progression ofthe syndrome by compromising nutritional intake, therebyadding a malnutrition component. There is a growing consen-sus that optimising nutritional intake is an important consid-eration to treat this malnutrition [4].

Future multimodal treatments of cancer cachexia are likelyto combine pharmacological treatment of the syndrome with

the assessment and management of nutritional impact symp-toms and appropriate nutritional support. Trials, such as theMENAC trial [5], are in progress testing this approach.

However, until effective multimodal treatments have beenestablished in everyday clinical practice, there remains anoth-er consideration: the detection and management of cachexia-related psychosocial distress [1, 6], also described ascachexia-related suffering. This distress is caused by the im-pact of cachexia on both patients and their families.

3 Impact on patient experience

The defining characteristic of cancer cachexia is involuntaryweight loss. Other symptoms are many and experienced bysome, but not all, of the cachectic population. Common symp-toms are anorexia, fatigue, functional loss, early satiety andfood aversions. Patients can describe change in appearanceand loss of physical strength often accompanied by change ineating habits (amount, type and pattern of food intake) [7, 8].

There is a long-recognised relationship between food, eat-ing and patient experience:

Eating is a social activity, and food has social andpsychological significance for individuals. These non-biological uses of food can contribute to nutritionaldisease or nutritional complications of other diseases.Conversely, nutritional therapies may disruptestablished eating patterns, creating negative psycholog-ical and social consequences that can result in noncom-pliance or even rejection of therapy. [9]

There is an extensive literature evidencing the symbolicmeanings of food, eating and weight amongst the healthypopulation. These meanings include sense of identity, person-al control, status, independence, health and well-being, de-pendency, relationship enhancing, relationship constraining,life enhancing and life threatening [10, 11]. The meanings offood, eating and weight that emerge in the talk of people whoare well are also evident in the lives of those with cancercachexia. An examination of the literature about the experi-ence of cancer cachexia evidences these meanings. They areconsidered below as positive and negative personal impacts.

3.1 Positive personal and social impacts

Muscle wasting in cancer cachexia can occur with normal orheavy body weight [12]. Some people have been found toexpress satisfaction with physical changes accompanying thesyndrome. Rhondali et al. [13] found 23 % (11/48) of weight-losing outpatients with advanced cancer to report improvedbody image. Overweight people with cachexia have beenfound to assume weight loss has health benefits [8] that are

90 J Cachexia Sarcopenia Muscle (2014) 5:89–94

identical to the benefits of being of a normal weight when ingood health. These observations evidence that weight andphysical appearance are important to how we see our-selves and how we think others view us. The positiveimpact of cancer cachexia is perhaps less obvious, evenhidden, compared to the negative emotional and socialimpacts.

3.2 Negative personal and social impacts

McClement [14] uses the phrase ‘dealing with a body inshambles’ in an attempt to capture the experience of disease-induced weight loss. She draws on emotive statements madeby participants in an interview study to communicate thenegative impact of cancer-related weight loss.

This bony thing shows up in the mirror every morning,and my eyes fall on this creature on the other side of themirror.

I was five feet from him before he could figure out whoit was. I cried, because he was a very, very good friendof mine. It seemed to confirm the fact that I was soskinny.

These quotes illustrate some of the themes identified inother exploratory studies of patient experience of involuntaryweight loss or cancer cachexia. The physical change in ap-pearance changes sense of self, which can lead to puzzlementand confusion [15], and even challenges identity [11]. Thebody is experienced differently leading to body image con-cerns [16] including negative body image [14], with youngerpeople found to have the greatest dissatisfaction with bodyimage [17].

Change in physical appearance is accompanied by changein social encounters and relationships. The negative percep-tions of body image can be reinforced by the response ofothers to the change. A sense of being different can promptfeelings of helplessness, loss of control, abandonment [8] andstigmatisation [14]. Such experience can precipitate anxiety[18] and distress [19, 20].

People with disease-related weight loss have functionalloss [21] accompanied by loss of independence [20], whichcan cause distress at being a burden to others [19].

I don’t like being weak… frustrated, awfy [awfully]frustrated about it… Sometimes I can’t even open thesebottles. I haven’t the strength to open it… I’ve forgottenall about this independence. I used to be awful indepen-dent. I would dae [do] a’ [all] things myself. Nae [Not]now. No. No. Completely changed. I’m not scared toask things now… I depend on others for lots of thingsnow that I never did afore [before]. Cause I used to be

very very independent. Wouldn’t let them do anythingfor me. But I’m glad of it now. [22]

Furthermore, uncontrolled weight loss provokes thoughtsof imminent death [8].

You don’t necessarily have to get on the scales, you seethe bones begin to protrude and feel the end is nigh. [8]

Autonomy, control and independence are socially valuedand admired. A dominant discourse in Western society is oftaking control of one’s body to sustain health and indepen-dence and prolong life. Physical appearance symbolises wor-thiness, control and self-discipline [10]. Visible wasting sym-bolises not only physical failing but also emotional and socialfailing.

Some authors are beginning to identify tumour, socialcontext or disease site-specific causes of distress. For exam-ple, Chasen and Bhargava [23] have found head and neckcancer patients can experience social isolation as a conse-quence of drooling and other problems associated with theirdisease and treatment. A study by Lövgren et al. [17] foundthat those living with a partner found appetite loss moreproblematic than those living alone. Bell et al. [24] argue forculturally sensitive dietary information on the basis of holdinga focus group with a Canadian Chinese cancer support group.The group members were experiencing conflict between thebiomedical perspective on food and nutrition and traditionalChinese beliefs about food, health and illness.

3.3 Consequences of personal and social impacts

The personal and social impacts of cancer cachexia whetherpositive or negative have implications for the management ofthe syndrome. If involuntary weight loss is welcomedamongst the obese, it may inhibit their self-management ofdiet and physical activity, currently thought important formaintenance of muscle mass and mitigation of progressionof the syndrome. Conversely, if involuntary weight loss isunwelcome and evokes distress, talking about weight, dietand physical activity may be difficult, presenting an obstacleto both offering psychosocial support and supporting compli-ance with multimodal treatment.

4 Impact on family experience

Because the symptoms of cancer cachexia impact social in-teractions and relationships, patients’ families are affected.Little attention has been paid to family members of peoplewith cachexia, in spite of their potential to influence bothpsychosocial support and treatment compliance.

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4.1 Positive personal and social impacts

Unlike patients, family members have not been found toreport patients’ involuntary weight loss being a health benefit,or even as being of no concern.

4.2 Negative personal and social impacts

A consistent story emerges from the few studies exploringfamily experience of cancer cachexia. In England, Ireland,Switzerland, Canada and America, empirical studies havefound the symptoms of cachexia distressing for family mem-bers [15, 20], to disrupt daily routines [15], to be experiencedas a cascade of losses [25], to bring about role change [15] andto be accompanied by lost opportunities for interpersonalinteraction [26]. All of these impacts are illustrated in thefollowing quote from a work by Meares [27]:

I cooked a lot, I baked a lot… He ate what I madebecause I made what he liked… We always ate togeth-er… He wouldn’t eat if I didn’t eat, so I stopped eatingwhen he stopped eating… and dinner hour, I didn’trealize until he stopped eating that there was a dinnerhour, and then there was none, and it was so difficult toget through the day because what to do you do from 5 to7? That part of your day is empty.

Such changes in everyday life can precipitate conflict with-in families over food [18]:

His daughter came last November and she was forcinghim to eat gelatin, and I said, “He doesn’t want it. Lethim decide what he wants.” She would say, “Dad youhave got to eat, you have got to eat.” He would becomeagitated, and hewould say, “No,” and she would still sayfor him to eat to be strong. At the end, I was watchinghis daughters trying to coax him, and never giving up.And I said, “Good Lord, leave the poor man alone!”

Conflicting opinion in families relating to food and eatingmay arise from not knowing what to do in a context where it isunusual to initiate discussion about weight and diet withsomeone who has visible weight loss. Moreover, the limitedtalk that does take place about weight and eating problems canresult in feelings of being neglected by health-care profes-sionals [25, 28], feelings of rejection [18] and even socialexclusion [16]:

At first I thought we were in limbo, nobody cared, thatwe couldn’t turn to anybody… nobody seemed to helpus… we just had to cope on our own.... I thought thatsomeone should have come and spoke to us as a familyto tell us what to expect… when he wasn’t feeling well

and he wasn’t eating… we didn’t know whether to callfor a doctor or what or who to turn to.

4.3 Consequences of personal and social impacts

The importance of considering the impact of cancer cachexiafor family members, as with patients, lies in the managementof the syndrome. Family members influence patient self-management [29]. For example, they may reinforce or chal-lenge a patient’s response to the symptoms of cancer cachexia.For example, support a decision by an obese patient to con-sider self-management of diet and physical activity as beingunimportant. Similarly, if the patient’s involuntary weight lossand other symptoms evoke distress and a reluctance to talkabout the experience, then this might be a further obstacle topatient uptake and compliance with both multimodal treat-ment and supportive psycho-educational interventions.

5 Models of the psychosocial effect of cancer cachexia

Theoretical explanations of how people feel and behave inresponse to cancer anorexia that can inform clinical interven-tions are few. McClement et al. [28] developed a model thatcategorised patient and caregiver response to anorexia as‘fighting back’, ‘letting nature take its course’ or ‘waffling’(vacillating between approaches). These three categories wereproposed as different ways of ‘doing what’s best’ whenconfronted by anorexia. Shragge et al. [30, 31], during alongitudinal interview study with 12 patients with cancercachexia, found that they shift conscious control of eatingonce the normal desire to eat was lost. He theorises that takingconscious control is important for emotional and social adap-tation to anorexia and therefore that patients should be sup-ported in this behaviour.

My own work has proposed that there is a weight losstaboo sustained by the helplessness induced by cancer anorex-ia in patients, caregivers and health-care professionals [8].This taboo can obstruct communication which might other-wise help patients and their family members seek help forweight- and eating-related distress. The identified solution isto develop communication techniques that can break throughthe weight loss taboo. The work also has developed a theoryof self-management of weight and eating problems [29] in-formed by both Lazarus’ theory of adaptation and coping [32]and the ways patients and their family members were found tomanage life with cancer anorexia. Breaking through theweight loss taboo is seen as a pathway to the reinforcementof existing coping resources and raising awareness of alterna-tives. More recently, Reid et al. [18] reported that the emo-tional consequences of cancer anorexia may be greatest forcaregivers and that distress is caused by the resulting conflict

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between patient and caregiver perspectives on declining foodintake. She argues that family members use feeding as adefence against anxiety, and therefore, the solution is to pro-vide information about cancer cachexia.

However, it should be noted that the models identified todate are based on empirical studies of people who wouldmostly fall into the category of refractory cachexia. No em-pirical work has been conducted to examine the similarity anddifference in psychosocial impact according to the stage ofcachexia.

6 Are models useful and relevant?

The empirically based models of the psychosocial effect ofcancer cachexia generate complementary propositionsexplaining the experience of cancer cachexia for patients andtheir family members. These propositions, which may helpidentify effective psychosocial interventions to alleviate thenegative impact of cancer cachexia, include the following:

& Providing information about cachexia will alleviate anxi-ety and break the cycle of conflict [18].

& Aiding conscious control can facilitate adaptation [31].& Enhancing personal and environmental coping resources

will aid self-management and alleviate cachexia-relatedsuffering [2, 29].

& The weight loss taboo is an obstacle to the communicationnecessary to address cachexia-related problems, such asnutritional impact symptoms [8].

Collectively, the models suggest that providing informationabout cancer cachexia, supporting adaptation and strengthen-ing coping and intervening in the interactional processes be-tween someone with cachexia and others will all have benefit.These interventions have all been theorised to reduce thenegative emotional consequences of cancer cachexia. Thishas yet to be demonstrated empirically. Only one approachhas been tested, this being one that combined an interactionalprocess for breaking through the weight loss taboo with in-formation provision and support for self-management ofcachexia-related problems. The approach was found accept-able and feasible in a small exploratory trial with no negativeconsequences [33].

7 Utility and relevance of psychosocial supportfor multimodal treatment

Cancer cachexia is currently understood to be multicausal,thus requiring multimodal treatment. For example, a multi-modal treatment might combine pharmacology to treat prima-ry causes such as the tumour-induced inflammatory process

that contributes to weight loss, nutritional support to counterany malnutrition component of symptom progression andexercise to maintain muscle mass. It could also include apsychosocial component to address cachexia-induced distress.However, no empirical work has been conducted to investi-gate the potential for psychosocial intervention to facilitatemultimodal treatments.

Obstacles to effective multimodal treatment may includepsychosocial factors, such as attitudes, beliefs and behavioursof patients, carers and health-care professionals. The weightloss taboo may explain why patients and families can reportthe unmet need for information about weight loss and anorex-ia [34]. It may also explain why health-care professionals havebeen found to manage the syndrome reactively [35]. Attentionto patient-family-health-care professional communicationmay be an important consideration for the delivery of effectivemultimodal therapy.

There is evidence that carers influence patient response tocancer cachexia [36]. In other conditions, carer and health-care professional behaviour has been found to affect patientbehaviour. For example, people on cardiac rehabilitationprogrammes are more likely to attend with support from afamily member [37], family support and caregiver factorseffect medicine adherence, conflict in the family has a nega-tive effect on adherence [38] and, in diabetes, family support,in particular the quality of patient-family relationships, isimportant for adherence to dietary regimes and other treat-ments, the nature of support determining positive or negativeeffect on outcomes [39]. Psychosocial interventions may thushave utility and relevance for effective multimodal treatmentof cancer cachexia. Not only do they have the potential torelieve distress and conflict, but in doing so, they may alsoimprove compliance with other treatment components.

8 Conclusions and future research

Attention to the assessment of psychosocial, as well as clini-cal, impacts of cancer cachexia and implications for patient-health professional communication may be important to bothquality of life of patients and multimodal treatment of thesyndrome. If multimodal interventions are to be offered inearly stages of cachexia before disease is refractory to treat-ment, then they should perhaps become part of treatmentregimes and psychosocial support integrated with supportivecare in oncology clinics. In this way, some psychosocialobstacles to the treatment of cachexia might be overcome.

Psychosocial intervention in cachexia should be researchedfor potential to not only help people affected by cancer ca-chexia feel better but also for its potential to improve clinicaloutcomes through better uptake and compliance with multi-modal therapy.

J Cachexia Sarcopenia Muscle (2014) 5:89–94 93

Acknowledgments The authors certify that they comply with the eth-ical guidelines for authorship and publishing of the Journal of Cachexia,Sarcopenia and Muscle 2010; 1:7–8 (von Haehling S, Morley JE, CoatsAJ, and Anker SD).

Conflict of interest Jane Hopkinson has received a consultancy feefrom Helsinn Healthcare to participate as a member of the ScientificAdvisory Board in the development of a website for health-care profes-sionals dedicated to cachexia.

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