ORIGINAL ARTICLE

Associations between caregiving worries and psychophysical well-being. An investigation on home-cared cancer patients family caregivers

Veronica Zavagli1 & Elisabetta Miglietta2 & Silvia Varani1 & Raffaella Pannuti1 & Gianni Brighetti2 & Franco Pannuti1

Received: 2 February 2015 /Accepted: 13 July 2015 /Published online: 24 July 2015 # Springer-Verlag Berlin Heidelberg 2015

Abstract Purpose Caregiving to a family member with cancer might have health implications. However, limited research has in- vestigated the psychophysical health of home-cared cancer patients family caregivers. In a previous study, we have found that a prolonged worry in daily life is a crucial variable com- pared to caregivers’ psychophysical symptomatology. This investigation was designed to further examine the well-being of family caregivers, explore the domains of worry, and assess to what extent “content-dependent” worry could be associated with the caregivers’ health Methods The sample consisted of 100 family caregivers of oncological patients assisted at home. Participants completed a battery of self-report questionnaires (Penn State Worry Questionnaire, Worry Domain Questionnaire, Hospital Anxi- ety and Depression Scale, Family Strain Questionnaire Short Form, and Psychophysiological Questionnaire of the Battery CBA 2.0). Results The level of worry was medium-high among partici- pants, and caregivers worry more about their occupation and future. Depression, anxiety, and somatic symptomatology levels resulted mild, while strain level resulted high. Statistical analyses confirm the conclusions of the previous study, reveal- ing a significant positive correlation between worry levels and caregivers’ psychophysical health. Innovatively, it has been highlighted that who has higher scores of content-dependent

worry shows also higher levels of strain, somatic symptoms, anxiety, and depression Conclusions Not only trait-worry (“content-free” measure) but also content-dependent worry is associated with strain and negative health outcomes. People may worry about dif- ferent targets, and it might be useful to further investigate what are the specific worriers of family caregivers in order to pro- mote their physical and emotional well-being.

Keywords Caregiving . Family caregiver . Worry .

Psychophysical well-being . Cancer . Oncological home-care

Introduction

During the past years, substantial reforms took place in the health care systems concerning cancer, which is increasingly becoming a chronic disease.

The current health policy trend is to downsize acute-care hospitals and to transfer a greater portion of care at home [1], where family members form a substantial part of the care system. It leads an increased pressure mostly for family care- givers, bringing considerable responsibilities, needs, and problems [2].

A “family caregiver” is considered anyone (parents, adult children, spouses…) who provides any type of physical and emotional care for an ill loved one at home [3]. Thus, family cancer caregivers can be considered an extension of the health-care team, yet often, they take on a new role for which they may not feel adequately prepared and are nervous or overwhelmed about what is expected of them. In fact, they find themselves having to perform new and unfamiliar tasks (giving medicines, assisting with meals, and performing med- ical and nursing procedures) and may experience a number of mixed emotions including anxiety, anger, and sadness [3].

* Veronica Zavagli [email protected]

1 ANT Italia Foundation, via Jacopo di Paolo 36, Bologna, Italy 2 Department of Psychology, University of Bologna, viale Berti Pichat

5, Bologna, Italy

Support Care Cancer (2016) 24:857–863 DOI 10.1007/s00520-015-2854-y

Literature provides an abundance of studies about the nu- merous challenges encountered by family caregivers of pa- tients with cancer, all of which demonstrate that caregiving activity has an impact on physical and mental well-being and can negatively influence caregiver’s health outcome [4–14].

Specifically, different research studies have shown that caregivers of cancer patients are at high risk for development of different types of somatic complaints such as sleep distur- bances, weakness/fatigue and, less frequently, gastric prob- lems, loss of appetite, headache, and dizziness [4–12]. A study [9] has found that 95 % of the caregivers in the sample expe- rienced moderate to severe sleep disturbance as measured by subscales that assessed sleep quality, duration, efficiency, dis- turbances, and daytime function. Another research instead has demonstrated an association between caregiving and cardio- vascular and coronary heart diseases [10]. Rohlededer et al. (2009) have furthermore demonstrated that caregiving is also associated with variation in neurohormonal and inflammatory values, as a change in cortisol level and serum c-reactive pro- tein [11].

Caregiving does not limit his effect just on physical health. Several studies show how caregiver’s psychological well- being is also affected [4–7, 12–14]. In particular, sadness, irritability, anxiety, and depression are the most commonly reported problems for caregivers, with estimates for depres- sion at 39 % and for anxiety at 40 % [4]. In fact, one important feature of stressful events is that they trigger not only the physiological stress response but also the perseverative thoughts about these events.

Given the high pressure situations that caregivers usu- ally live is not surprising that they are likely to develop a lot of perseverative thoughts and worries. In fact, persev- erative cognition, as manifested in worry and rumination, is a common response to stress and moderates the health consequences of stressors because it can prolong stress- related affective and physiological activation, both before and after stressors [15, 16]. This happens because “wor- riers” people tend to repeat to themselves that things will get worse. In this way, worry or related manifestations of perseverative cognition theoretically leave the individual in a prolonged state of psychophysiological “action prep- aration,” and this prolonged state may have important long-term health consequences. As a result, perseverative cognition can be thought of as a mediator, or a final pathway, by which the stressor exercises its effects on the body’s systems. It does so by virtue of its propensity to prolong the stressor itself in a representational form continuing to activate the organism via the cardiovascu- lar, immune, endocrine, and neurovisceral systems [17, 18].

In a previous study [12], we have demonstrated that trait- worry (“content-free” measure) is frequent in cancer

caregivers’ daily life and that it is a crucial variable compared to caregivers’ well-being, determining important conse- quences in terms of psychophysical symptomatology.

However, worry is a broad term and people may worry about different things, and this has not been examined, as well as the relation between worry’s domains and somatic or psy- chological complain. Starting from these data, this investiga- tion aims to deeply examine the psychophysical well-being in a sample of family caregivers who provide care at home, ad- dressing the following objectives: (i) assessing the level of worry (both content-free and “content-dependent”), somatic symptomatology, depressive and anxious symptoms, and strain in the sample, (ii) investigating the amount of worry across different domains of everyday concern, and (iii) exam- ining the associations between worry (both content-free and content-dependent) and psychophysical well-being.

In our opinion, this theme is of great interest: in fact, people may worry about different targets, and it might be useful to further investigate what are the specific worriers of family caregivers and how they could be adversely associated with their health in order to promote their physical and emotional well-being.

Materials and methods

Study sample

Participants were enrolled in Bologna during the medical home-care request at the National Tumors Association (ANT).

The ANT is an Italian no-profit Foundation that provides since 1985 free medical, nursing, psychological, and social home care and support for cancer patients through its 20 on- cological hospitals at home in Italy [19].

An invitation to take part in the investigation was done to 112 caregivers. Two women and ten men declined (refusal rate=10.7 %) because they were not interested. Thus, our sample consisted of 100 family caregivers (73 female and 27 male) of oncological patients assisted at home by the ANT.

A summary of the characteristics of the subjects who took part in the study is presented in Table 1.

The socio-demographic data of our sample confirm the characteristics already observed in literature about cancer caregivers. In fact, this role is played mostly by women (70– 80 %) with an average age of 50–55 years [1].

Caregivers included in this study (i) were all living together with the patient, (ii) were regularly providing care to their adult cancer patient at home since the time of diagnosis (by managing the symptoms/pain of the patient at home, giving personal care, supporting the patient in the house and hospital/ bureaucratic settings, and providing emotional support), (iii) were not receiving any financial support for their caregiving

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work, and (iv) were 18 or older and played a key role in daily contact with physicians.

Procedure

Participants completed a battery of self-report questionnaires focusing on (i) trait-worry, (ii) domains of worry, (iii) somatic symptoms, (iv) depressive and anxious symptoms, and (v) strain. They underwent tests at the moment of oncological home-care request at the ANT Institute.

1. The Penn State Worry Questionnaire (PSWQ) [20] is the measure most frequently used to assess trait-worry in both clinical and nonclinical samples. It is a 16-item content- free measure of tendency to perseverative cognition, which assesses the generality, excessiveness, and uncon- trollability of worry. Scores range between 16 and 80, with higher scores indicating greater tendency to worry (cutoff=44±11). This scale has shown to possess high internal consistency and good test-retest reliability [20].

2. The Worry Domain Questionnaire (WDQ) [21] is a 25- item instrument whose development was influenced by the theory of Eysenck, who postulated organized cluster of worry related to information in long-term memory. Thus, it is a content-dependent measure, and it quantifies the amount of worry across five domains of everyday concern (relationships, lack of confidence, aimless future, work, and financial issues). Each item is rated on a five- point Likert scale. WDQ produces a profile of worry in the different domains and also a total score that is the sum of partial scores of each dimension. The partial score for each subscale is between 0 and 20, and the maximum total score corresponds to 100, with higher numbers representing greater worries. It is a questionnaire easy to

understand, and different studies show that it has good internal consistency, test-retest reliability, and validity [21, 22].

3. The Psychophysiological Questionnaire (QPF-R) [23] in- quires about 30 somatic symptoms accounting for the majority of physical complaints. For scoring purpose, re- sponses are coded from 1 (“no feeling”) to 4 (“a strong feeling”); thus the total score ranged from 30 to 120, with higher numbers representing greater symptomatology. This scale has adequate psychometric properties [23].

4. The Hospital Anxiety and Depression Scale (HADS) [24, 25] is a 14-item self-report screening instrument for anx- iety and depression in a nonpsychiatric population. Re- sponses are based on the relative frequency of symptoms over the past week, using a four-point scale ranging from 0 (not at all) to 3 (very often indeed). Responses are summed to provide separate scores for anxiety and de- pression symptomatology with possible scores ranging from 0 to 21 for each scale. A study [25] provided nor- mative data for nonclinical samples, suggesting to use a cutoff level of 10/11 for both scales. A score of 0 to 7 indicates a lack of depressive/anxious symptoms. A score between 8 and 10 suggests a “borderline” case, 11 to 15 suggests moderate symptoms, and a score greater than 16 indicates the presence of severe symptoms. The HADS is quick and easy to complete and score, and it has established reliability and validity [24–26].

5. The Family Strain Questionnaire Short Form (FSQ-SF) [27] is a 30 yes-no items instrument designed to screen caregiver-related problems. The total number of “yes” responses is the indicator of caregiver strain, and higher scores correspond to higher and potentially dangerous levels of stress. In fact, the FSQ-SF items are listed in order of severity of stress and grouped into areas of in- creasing psychological risk (Area OK, 0–6 points: the caregiver is coping quite well with the situation; Area R- Recommended, 7–12 points: the caregiver is coping suf- ficiently well but the scale indicates some maladjustment, so a psychological consultation should be recommend in case the symptoms get worse; Area SR-Strongly Recom- mended, 13–20 points: the caregiver presents an evidence of strain which requires psychological examination and counseling; Area U-Urgent, 21–30 points: the caregiver presents great strain and high psychological risk and it is urgent that she/he is seen by a psychologist or/and by a psychiatrist). It is a questionnaire quick to use, and it has satisfactory psychometric properties.

In addition, socio-demographic data were retrieved (sex, age, marital status, education level, etc.).

The investigation received a formal approval by the Re- search Ethical Committees of the Department of Psychology of the University of Bologna and of the ANT Italia

Table 1 Study population Caregivers

N 100

Age [years] 49.8±12.8

Gender (male/female) 27/73

Caregiver role

Husband or wife [%] 17

Son or daughter [%] 74

Other relatives [%] 9

Caregiving duration [months]

17.5±34.3

Employment [%] 86

Years of education

5 years [%] 4

8 years [%] 23

13 years [%] 54

≥16 years [%] 19

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Foundation. Participants gave informed written consent for participation to the investigation, data analysis, and data publication.

Statistical analyses

All analyses were conducted using SPSS 19 for Windows, and differences were considered statistically significant if the p value was below 0.05. Violation of assumptions (normal dis- tribution and equal variance for all groups) was assessed by applying the Kolmogorov-Smirnov test for normality and the Levene homogeneity of variance test. Since variables were normally distributed and the size of the sample was large, parametric analyses were run.

Simple parametric correlation (Pearson) was used to assess the statistical link between worry levels, somatic symptom- atology, depressive and anxious symptoms, and strain. One- way analysis of variance (ANOVA) was performed for com- parisons of means between groups (worrying caregivers vs not worrying caregivers).

Results

The level of trait-worry resulted medium-high among infor- mal caregivers (Mean=53.56; Sd=11.09).

Scores of WDQ showed medium level of content- dependent worry (Mean=21.51; Sd=13.59) and demonstrated that the caregivers worry more about their occupation (Mean= 5.70; Sd=3.54) and their future (Mean=5.42; Sd=4.21) (see Fig. 1).

Furthermore, the informal caregivers showed medium-high levels of depression (Mean=9.22; Sd=3.97), anxiety (Mean= 10.37; Sd=3.77), and somatic symptomatology (Mean= 45.62; Sd=12.34). As shown by the scores of HADS, 46 and 35 subjects had a score higher than 11, respectively, in the scale of anxiety and depression, that indicates the presence of moderate and severe symptoms.

The level of strain appeared to be elevated in the sample (Mean=19.18; Sd=7.23), and only 16 subjects were placed in areas that showed an adequate coping (Area OK, 0–6 points, and Area R-Recommended, 7–12 points—see Procedure section).

The results of simple parametric correlation (Pearson) are shown in Table 2. The PSWQ had a strong, positive, and significant correlation with the WDQ (r=.543, p=0.000). Scores of PSWQ (trait-worry) and scores of WDQ (content- dependent worry) had a moderate, positive, and significant correlation with the physical symptomatology, the depressive and anxious symptoms, and the strain’s level (Fig. 2).

The duration of caregiving did not correlate with worry (both content-free and content-dependent) and measures of psychophysical well-being.

A one-way ANOVAwas conducted to investigate if partic- ipants with high scores of trait-worry (worrying caregivers) showed also high levels of worry across the five domains of the WDQ. It revealed that worrying caregivers showed also higher levels of worry about relationships (F(1, 98)=29.033, p=0.000), lack of confidence (F(1, 98)=23.113, p=0.000), aimless future (F(1, 98)=28.979, p=0.000), and work (F(1, 98)=12.527, p=0.001), but not about financial issues (F(1, 98)=.291, p=0.591).

Conclusion and discussion

The main aim of the present investigation was to further ex- amine the well-being of family caregivers, investigate for the first time the amount of worry across different domains of everyday concern, and assess to what extent worry (both content-free and content-dependent) could be adversely asso- ciated with the caregivers’ psychophysical health.

Innovatively, the results show that both scores on the Penn State Worry Questionnaire (trait-worry) and scores on the Worry Domains Questionnaire (content-dependent worry) have a moderate, positive, and significant correlation with the physical symptomatology, the depressive and anxious symptoms, and the strain’s level. These findings are certainly relevant because they connect worry with a greater presence of psychophysical symptomatology, confirming the conclu- sions of a previous study [12]. In that work, we have demon- strated that worry is frequent in cancer caregivers’ daily life, and it is a crucial variable compared to caregivers’ health, being correlated with physical symptoms, depression, and dis- comfort. These conclusions are also consistent with previous research studies [15–18] documenting that perseverative cog- nition might act directly on somatic disease via enhanced ac- tivation of the cardiovascular, immune, endocrine, and neurovisceral systems. In fact, perseverative cognition may contribute to ill health by expanding the temporal duration of a stressor beyond the traditional reactivity period to include

Fig. 1 Profile of family caregivers’ worry in the different domains (relationships, lack of confidence, aimless future, work, and financial issues)

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Table 2 Parametric correlation (Pearson)

N=100

PSWQ WDQ1 WDQ2 WDQ3 WDQ4 WDQ5 WDQ TOT. HADS (A) HADS (D) FSQ QPF-R

PSWQ Correlation – – – – – – – – – – –

Sig.

WDQ1 Correlation .529 – – – – – – – – – –

Sig. .000

WDQ2 Correlation .494 .717 – – – – – – – – –

Sig. .000 .000

WDQ3 Correlation .506 .617 .538 – – – – – – – –

Sig. .000 .000 .000

WDQ4 Correlation .381 .433 .551 .498 – – – – – – –

Sig. .000 .000 .000 .000

WDQ5 Correlation .106 .241 .225 .502 .251 – – – – – –

Sig. .294 .016 .024 .000 .012

WDQ TOT. Correlation .543 .798 .808 .853 .728 .572 – – – – –

Sig. .000 .000 .000 .000 .000 .000

HADS (A) Correlation .632 .331 .335 .522 .235 .153 .429 – – – –

Sig. .000 .001 .001 .000 .019 .128 .000

HADS (D) Correlation .521 .314 .375 .448 .279 .113 .415 .725 – – –

Sig. .000 .001 .000 .000 .005 .261 .000 .000

FSQ Correlation .493 .493 .486 .431 .234 .223 .497 .676 .618 – –

Sig. .000 .000 .000 .000 .019 .026 .000 .000 .000

QPF-R Correlation .562 .249 .275 .357 .279 .065 .333 .672 .578 .535 –

Sig. .000 .012 .006 .000 .005 .522 .001 .000 .000 .000

In bold are the significant results

PSWQ scores for the Penn State Worry Questionnaire, WDQ1 scores for the Worry Domain Questionnaire domain 1, relationships, WDQ2 scores for the Worry Domain Questionnaire domain 2, lack of confidence, WDQ3 scores for the Worry Domain Questionnaire domain 3, aimless future, WDQ4 scores for the Worry Domain Questionnaire domain 4, work, WDQ5 scores for the Worry Domain Questionnaire domain 5, financial issues, WDQ TOTscores for the WDQ total score, HADS (A) scores for the anxiety subscale of the Hospital Anxiety and Depression Scale, HADS (D) scores for the depression subscale of the Hospital Anxiety and Depression Scale, FSQ QPF-R scores for the Psychophysiological Questionnaire

Fig. 2 BContent-dependent^ worry (WDQ total score) resulted associated with physical symptoms (QPF-R total score)

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anticipation and recovery, thereby being the source of prolonged physiological activation.

Our findings add new information to the previous litera- ture, showing that the family caregivers worry more about their work/occupation and their aimless future. Work items include “I don’t work hard enough,” “I leave work unfin- ished,” “I make mistakes at work,” “I will not keep my work- load up to date,” and “I will be late for an appointment.” Aimless future items include “my future job prospects are not good,” “I’ll never achieve my ambitions,” “I have no concentration,” “life may have no purpose,” and “I haven’t achieved much.” More than half (86 % percent) of the care- givers included in this investigation are employed either full time or part time, juggling work with their caregiving role. We can hypothesize that, given the prolonged economic down- turn, it is natural that family caregivers worry a lot about their occupation and future, mainly for fear of losing their jobs upon which their futures depend. The findings suggest that the domain of aimless future resulted positively and signifi- cantly associated with the caregivers’ psychophysical health (physical symptomatology, depressive and anxious symp- toms, and level of strain). So, we were also able to identify a specific worry that might be a point to start to support family caregivers.

From this point of view, the investigation is particularly innovative and differs from previous studies conducted. Per- haps not surprisingly, different studies have reported that fam- ily caregivers experience a range of psychological complica- tions. They have found rates of anxiety and depression among caregivers that are comparable to [28–30] and even surpass [31, 32] those of the patients for whom they provide care. Few studies have also suggested that anxiety is not only present in both patients and caregivers but also shared by the dyad [33]. However, there are no works in the literature concerning the worrisome thinking as a response to stressful events in care- givers or in persons who are facing dramatic life events nor even investigating the amount of worry across different do- mains of everyday concern.

Furthermore, these results have practical and operative im- plications for advancing public health research and practice. Therapeutic models need to increase the access and availabil- ity of appropriate, timely, and on-going education and support programs for caregivers in order to meet their caregiving re- sponsibilities. Different studies [34, 35] have reported that interventions that were integrative in their approach (i.e., com- bining elements of psychoeducation and support or commu- nication skills training) conferred multiple benefits for family caregivers. The same research highlighted the clinically sig- nificant benefits of problem solving and skills building inter- ventions, cognitive-behavioral therapy (CBT) and Interper- sonal Therapy (IPT) for both cancer patients and their care- givers with symptoms of anxiety and depression. Because worrying is a mental habit that can be broken, it would be

recommended that the “worriers” family caregivers must be identified early and treated properly, so that they can maintain their own health and provide the best care possible to the patient. In this regard, considerable progress has been made recently in the design and scientific evaluation of effective treatments for worry [36]. Although these techniques are mostly based on CBT, basic research is taking into consider- ation other factors to be included in treatment (for example, mindfulness techniques and elements of interpersonal thera- py). In particular, paying attention to present-moment reality, the use of mindfulness-based therapy (MBT), which includes both mindfulness-based stress reduction (MBSR) and mindfulness-based cognitive therapy (MBCT), may be of par- ticular importance to family caregivers [35]. In fact, formal periods of mindfulness practice can serve as a restorative ref- uge into the present moment, free from the inexorable worries of life, presumably by targeting rumination and worry, both considered to be respectively maintaining processes across mood and anxiety disorders.

Obviously, this is a preliminary investigation, and limita- tions must be acknowledged. First, caregivers may have worries about other domains not included in the WDQ, which is not built specifically for the care situation and focuses on issues and concerns related solely to the subject himself and his own life, not to the loved one, the disease, and what it involves. However, measuring worry about particular health events is up in the air, and none of the existing scales is per- fect. Second, it would also be appropriate to analyze a wider sample and to compare levels of caregivers’ psychophysical health to those of a sample without caregiving context in order to obtain more accurate results that will be more easily exten- sible to the population. Future work might analyze more in detail caregivers’ unmet needs and specific worries: it would be a promising and efficient way to integrate family members of cancer patients in the program of supportive services, pro- moting their physical and emotional well-being.

In conclusion, the present investigation makes a relevant contribution to the literature highlighting that caring for a loved one suffering from cancer can lead to prolonged and intense worry that is associated with psychophysical symp- tomatology. This topic is of great interest because family care- givers have a legitimate and crucial role in the cancer home- care team, and even if these are tough economic times, supporting them is one of the most cost-effective long-term care investments we can make. In fact, as long as caregivers are able to provide care and effectively attend to the physical and emotional needs of the cancer patient, they are often able to delay costly nursing home placements and reduce reliance on public health programs.

Acknowledgements We would like to thank all the family caregivers that participated in the study. This work was possible only because they gave their time and shared their experiences with us.

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Conflict of interest The authors declare that they have no conflict of interest.

Informed consent Informed consent was obtained from all individual participants included in the study.

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ASSOCIATED CONTENT

See accompanying article on page e113

DOI: https://doi.org/10.1200/JOP. 2017.028498; published online ahead of print at jop.ascopubs.org on January 30, 2018.

Price of Cancer Care and Its Tax on Quality of Life George Tran and S. Yousuf Zafar

Although innovations in cancer therapy have led to less toxic treatments, these new drugscomewithhigherpricetags,withmany medications costing more than $100,000 annually.1,2 As costs increase, a larger bur- denisbeingplacedonpatientsintheformof higher out-of-pocket expenses, deductibles, coinsurance, and copayments.3 The increas- ing treatment-related costs place a significant strain on patients and their families. A growing body of evidence suggests that the financial burden of cancer treatment has a toxic impact on many aspects of patients’ lives, including their financial well-being, health-related quality of life, and mortality.

A cancer diagnosis can also have sig- nificant ramifications for patients’ financial well-being. Hospitalizations, rising insur- ancepremiums,prescriptiondrugcosts, lost work productivity and income, and annual out-of-pocket expenses that often exceed $5,0004 can ultimately result in untenable

financial burden, even for patients with insurance, and—in a small minority— bankruptcy. Indeed, financial insolvency following a cancer diagnosis is a risk factor for mortality.5 Furthermore, patients who are dealing with significant financial bur- dens are more likely to ration their care or forego treatment altogether.6 Some patients delay or discontinue their medications,7

take less medication than prescribed, use over-the-counter medications as an alter- native, or take medications prescribed for others to alleviate their financial burden.8

Patients with cancer also experience significant alterations in their health-related quality of life (HRQOL) as a result of fi- nancial toxicity. A study by Park and Look9

examines the relationship between objective measures of financial burden, HRQOL, and psychological health of patients with cancer in the United States. Financial burden was estimated by calculating the ratio of out-of- pocket expenditures to family income, with high financial burden defined as out-of- pocket expenditures exceeding either 10% or 20% of family income. Their findings illustrate the inverse relationship between high financial burden and HRQOL, with a stronger effect observed on physical health than on mental health.9 The patients studied were also more likely to experience non- specific psychological distress, were older, were more likely to be uninsured, and often had more chronic conditions than patients who did not experience high financial bur- den. These results highlight the powerful relationship between financial hardship and HRQOL. This study builds upon the results of previous studies that have shown that

patients who report greater financial bur- den also report poorer general quality of life, physical health, mental health, and social life.10-13

The interaction between the economic repercussions of cancer care and quality of life requires further exploration. The re- lationship between financial burden and quality of life is probably multifactorial and perhaps even bidirectional. One pos- sible explanation for this relationship is that patients who experience financial burdens are less able to afford necessary care and thus experience greater physical and mental stress. To address their shortage of finan- cial resources, patients may alter their life- style by reducing leisure activities, spending

Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 2 / February 2018 n jop.ascopubs.org 69

Editorial

less on basic necessities such as food and clothing, depleting their savings, or selling off possessions or property.8 All of these compensatory strategies may result in poorer sub- jective well-being among patients with cancer. However, it may also be true that patients with worse quality of life at baseline (ie, those who are sicker and have worse outcomes) may deplete their financial resources faster and thus expe- rience a greater financial burden.14

Coping mechanisms in response to cancer diagnoses and financial burdens may also play a role in mediating the re- lationship between HRQOL and financial toxicity. Perhaps patients who exhibit poor coping consequently experience greater financial burdens. Patients can use a myriad of coping mechanisms that are generally grouped into two major cate- gories: emotion-focused or problem-focused coping, as his- torically distinguished by Lazarus and colleagues (Lazarus and Folkman15 and Lazarus et al16). Emotion-focused coping is the regulation of internal conflicts by methods such as positively reappraising the situation, avoiding thoughts related to the stressor, turning to religion, or using humor. Problem-focused coping involves managing the external components of a sit-

uation. In patients with cancer, this may manifest as a strong desire to remain compliant with their medication regimen, seeking information about other treatments, or viewing their illness as a challenge to be surmounted. Patients often use a variety of coping mechanisms, but studies have found that patients who identified their cancer diagnosis as a threat tended to use problem-focused mechanisms, whereas those who viewed their diagnosis as a harm or a loss were more likely to implement emotion-focused or avoidance strategies.17 It has been shown that patients with advanced cancer use emotion- focused coping more often, perhaps because they no longer have the physical ability to deal with their disease via problem-focused mechanisms.18 When faced with financial hardships, patients were more likely to use problem-focused strategies.19 Further investigation into the relationship be- tween patients’ ability to cope with their diagnosis and fi- nancial burdens is necessary to better characterize how they affect one another.

Although research continues to emerge on the impact of financial toxicity, there remains a great deal of work to be done in terms of finding the best solutions to implement and identifying which patient populations will benefit the most. Interventions need to be targeted toward reducing financial toxicity, screening for both psychosocial distress and fi- nancial distress, and providing better psychosocial support

for patients. The first step to reducing financial toxicity is to routinelyincludecostdiscussionsaspartofapatient’s care. In a study of 484 patients from academic and community general medicine practices, 63% of participants expressed a desire to discuss out-of-pocket costs of treatment with their physicians, but only 15% of those patients reported that they actually had those discussions.20 In patients with cancer, data have indi- cated that concerns about both present and future costs are prevalent, even among those with insurance.21 Furthermore, studies suggest that cost discussions can reduce out-of-pocket costs for patients, mostly without changing care.22 Until both providers and patients engage in cost discussions, the eco- nomic impact of cancer care will continue to be an under- addressed issue.

Improved screening for both psychosocial and financial distress could benefit patients by allowing for early identifi- cation of toxicities from treatment that extend beyond phys- ical manifestations. This could lead to better allocation of resources to provide the appropriate interventions, giving psychosocial and financial support for patients in need. As discussed by Park and Look,9 patients with cancer who have

high financial burden demonstrated greater nonspecific psy- chological distress. It is crucial to address psychosocial distress because it may lead to worse quality of life and poorer treatment adherence.23 However, the challenge lies in finding the ap- propriate screening tools and standardizing their use among providers. Validated patient-reported measures have been de- veloped for financial distress screening, but those measures are long and require scoring.24 Often, a simple, brief question, such as, “Are you ableto afford yourcare?” can go a long way toward identifying previously unnoticed financial strain.

The sequelae of financial toxicity are myriad and play a crucialroleinpatientoutcomesandqualityoflife.Asdrugcosts continue to rise and as patients are increasingly expected to shoulder the burden, we must find novel ways to mitigate this issue to provide patients with the best possible disease out- come. Until we find long-term policy solutions that reduce drug prices and improve insurance design, the solution lies in the patient-physician relationship.

Authors’ Disclosures of Potential Conflicts of Interest Disclosures provided by the authors are available with this article at jop.ascopubs.org.

Author Contributions Conception and design: All authors Manuscript writing: All authors Final approval of manuscript: All authors Accountable for all aspects of the work: All authors

70 Volume 14 / Issue 2 / February 2018 n Journal of Oncology Practice Copyright © 2018 by American Society of Clinical Oncology

Tran and Zafar

Correspondingauthor:S.YousufZafar,MD,MHS,DukeCancerInstitute,2424 Erwin Rd, Suite 602, Room 6046, Durham, NC 27705; e-mail: yousuf.zafar@ duke.edu.

References 1. Experts in Chronic Myeloid Leukemia: The price of drugs for chronic myeloid leukemia (CML) is a reflection of the unsustainable prices of cancer drugs: From the perspective of a large group of CML experts. Blood 121:4439-4442, 2013

2. Mailankody S, Prasad V: Five years of cancer drug approvals: Innovation, efficacy, and costs. JAMA Oncol 1:539-540, 2015

3. Goldman DP, Joyce GF, Zheng Y: Prescription drug cost sharing: Associations with medication and medical utilization and spending and health. JAMA 298:61-69, 2007

4. Bernard DS, Farr SL, Fang Z: National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol 29:2821-2826, 2011

5. Ramsey SD, Bansal A, Fedorenko CR, et al: Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol 34:980-986, 2016

6. Kent EE, Forsythe LP, Yabroff KR, et al: Are survivors who report cancer-related fi- nancialproblems morelikelyto forgoordelaymedicalcare?Cancer119:3710-3717,2013

7. Kaisaeng N, Harpe SE, Carroll NV: Out-of-pocket costs and oral cancer medication discontinuation in the elderly. J Manag Care Spec Pharm 20:669-675, 2014

8. Zafar SY, Peppercorn JM, Schrag D, et al: The financial toxicity of cancer treat- ment: A pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist 18:381-390, 2013

9. Park J, Look KA: Relationship between objective financial burden and the health- related quality of life and mental health of cancer patients. J Oncol Pract 14: e113-e121, 2018

10. Fenn KM, Evans SB, McCorkle R, et al: Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract 10:332-338, 2014

11. Zafar SY, McNeil RB, Thomas CM, et al: Population-based assessment of cancer survivors’ financial burden and quality of life: A prospective cohort study. J Oncol Pract 11:145-150, 2015

12. Delgado-Guay M, Ferrer J, Rieber AG, et al: Financial distress and its associations with physical and emotional symptoms and quality of life among advanced cancer

patients. Oncologist 20:1092-1098, 2015

13. Kale HP, Carroll NV: Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors.

Cancer 122:283-289, 2016

14. Lathan CS, Cronin A, Tucker-Seeley R, et al: Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. J Clin

Oncol 34:1732-1740, 2016

15. Folkman S, Lazarus RS: An analysis of coping in a middle-aged community sample. J Health Soc Behav 21:219-239, 1980

16. Folkman S, Lazarus RS, Dunkel-Schetter C, et al: Dynamics of a stressful en- counter: Cognitive appraisal, coping, and encounter outcomes. J Pers Soc Psychol 50:

992-1003, 1986

17. Franks HM, Roesch SC: Appraisals and coping in people living with cancer: A meta- analysis. Psychooncology 15:1027-1037, 2006

18. Thomsen TG, Rydahl-Hansen S, Wagner L: A review of potential factors relevant to coping in patients with advanced cancer. J Clin Nurs 19:3410-3426, 2010

19. Head B, Harris L, Kayser K, et al: As if the disease was not enough: Coping with the financial consequences of cancer. Support Care Cancer https://doi.org/10.1007/

s00520-017-3918-y [epub ahead of print on October 11, 2017]

20. Alexander GC, Casalino LP, Meltzer DO: Patient-physician communication about out-of-pocket costs. JAMA 290:953-958, 2003

21. Stump TK, Eghan N, Egleston BL, et al: Cost concerns of patients with cancer. J Oncol Pract 9:251-257, 2013

22. Zafar SY, Chino F, Ubel PA, et al: The utility of cost discussions between patients with cancer and oncologists. Am J Manag Care 21:607-615, 2015

23. Mehnert A, Hartung TJ, Friedrich M, et al: One in two cancer patients is sig- nificantly distressed: Prevalence and indicators of distress. Psychooncology, 2017

https://doi.org/10.1002/pon.4464 [epub ahead of print on May 31, 2017]

24. de Souza JA, Yap BJ, Wroblewski K, et al: Measuring financial toxicity as a clinically relevant patient-reported outcome: The validation of the COmprehensive Score for

financial Toxicity (COST). Cancer 123:476-484, 2017

Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 2 / February 2018 n jop.ascopubs.org 71

Editorial

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Price of Cancer Care and Its Tax on Quality of Life

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I 5 Immediate Family Member, Inst 5 My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

George Tran No relationship to disclose

S. Yousuf Zafar Employment: Novartis (I) Stock or Other Ownership: Novartis (I) Consulting or Advisory Role: AIM Specialty Health Travel, Accommodations, Expenses: Genentech

Volume 14 / Issue 2 / February 2018 n Journal of Oncology Practice Copyright © 2018 by American Society of Clinical Oncology

Tran and Zafar

Used with permission. Copyright © American Society of Clinical Oncology 2018. All rights reserved.

d l n i

Oncology Social Work in

W ith regard to cancer, two facts are clear: cancer is the second leading cause of death in the USA,1 and the consequences of unmet psychosocial needs for those with terminal cancer have

evastating consequences for quality of life experienced.2 The medical iterature on this topic recognizes the importance of addressing these eeds and recommends that the education and training for oncologists nclude skills necessary for assessing and handling psychosocial issues.3-5

This body of literature, however, does not address the importance of oncologists understanding the role of the oncology social worker, whose training and experience is focused exclusively on insuring that the psycho- social needs of individuals diagnosed with cancer are addressed. The oncology social worker is an important resource for oncologists, whose time allotted to patients is often focused out of necessity on medical issues and less on psychosocial needs. As the number of palliative care teams continues to grow, oncologists and oncology social workers will increas- ingly find themselves working together. If the team is to address holistically the needs of individuals with cancer, capitalizing on the social worker’s expertise and skills will be crucial.

This article seeks to heighten the awareness and understanding of oncology social work, as well as the contribution this profession can make to oncologists and other members of the palliative care team. First, the reported psychosocial needs of cancer patients and their families are discussed. Next, the skills, knowledge, and theoretical approaches a social worker uses to meet those needs are detailed. Finally, the relationship between oncology social workers and the oncologists with whom they work daily is addressed. It is hoped that the information provided in this article will result in an increased recognition of what oncology social work has to offer individuals grappling with the devastating effects of cancer, and to the oncologists who work to provide these individuals with

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sychosocial Needs of Patients Diagnosed with erminal Cancer Much has been written about the psychosocial needs of individuals iagnosed with terminal diseases, many of whom had a cancer diagnosis. ne line of research that has contributed a great deal of insight into the sychosocial needs of individuals at the end of life is the study of the actors that motivate individuals diagnosed with cancer and other terminal llnesses to consider a hastened death. Research has been conducted both retrospectively with health care rofessionals and family members and prospectively with terminally ill ndividuals. In regard to the retrospective reporting, individuals who ought a hastened death were motivated by psychosocial factors, such as ack of enjoyment in life,6 loss of control,6,7 fear of future pain,6,8 loss of eaning in life,9 feelings of being a burden,6,9 and loss of dignity6,9 and

utonomy.6 Prospectively, terminally ill individuals, many of whom were iagnosed with cancer, reported the same psychosocial factors as those eported retrospectively, as well as others. In regard to social support, ndividuals reported having few social supports,10,11 a lower quality of ocial support,10,12,13 conflictual social support,11 low satisfaction with ocial support,14 and a lack of social support.15 In addition to social upport needs, individuals also reported anxiety,12 depression,12,13 a lack f enjoyment in life, feelings of being a burden and useless,16 and a lack f control.16

Studies focused solely on cancer patients have also found psychosocial eeds to be prevalent. In a large study of oncologists, 72% reported that heir patients experienced psychosocial distress over issues that included ogistics, coping with their illness and treatment, and addressing the oncerns of their partner and children.17 In a qualitative study, researchers nterviewed young adults diagnosed with cancer, who reported experi- nces with emotional distress and a lack of social support.18 Researchers onducted a review of studies on depression and cancer and discovered vidence that depression can make coping with cancer more difficult, and t can negatively affect immune functions.19 A major study of 4500 atients diagnosed with cancer found that 35% reported experiencing sychological distress, and this distress was greatest for respondents hose cancer had a poor prognosis.20 In another study, fatigue, a key

ymptom of cancer, was found to be correlated with depression.21 Finally, n a systematic review of 94 studies conducted on the prevalence of unmet sychosocial needs, such needs were determined to be present both during

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ypes and Times In studies of individuals diagnosed with cancer, evidence has been

ound concerning the psychosocial distress associated with a particular uncture in the cancer journey or with a particular type of cancer. In a ualitative study of 96 terminally ill elders, 15 reported 4 critical events n their dying process that resulted in psychosocial suffering: two-thirds f these individuals were diagnosed with cancer.23 These 4 events ncluded being given a terminal diagnosis in what was perceived of as an nsensitive and uncaring manner; suffering unbearable and untreated hysical pain; not addressing the feelings individuals had about having to eceive chemotherapy or radiation treatment; and receiving care in a tressful environment. Concerning types of cancer, researchers have ound that persons with lung cancer had a significantly high risk of xperiencing psychosocial problems, such as depression and anxiety, fter both diagnosis and treatment.24 Forty-seven percent of 236 newly iagnosed breast cancer patients were determined to have experienced igh levels of distress resulting from worry, nervousness, and depres- ion.25

Knowledge of the types of psychosocial issues experienced by individ- als diagnosed with cancer, as well as particular times of vulnerability nd cancers that may put people at higher risk of psychological distress, s key to determining how best to intervene and address such issues. onsistently, authors of these studies point out the need for psychological

creening and early intervention,16,20,25 particularly at the time of iagnosis.24 Researchers also agree on the need for more research to efine current assessment procedures and develop interventions that ddress more effectively emotional distress in individuals diagnosed with ancer. Both assessment of psychosocial issues and intervention are the ey areas of expertise possessed by trained oncology social workers.

ncology Social Work The main providers of psychosocial services in cancer centers and ealth care settings in the community are oncology social workers.26

hese professionals possess significant knowledge of cancer, the resulting sychosocial issues, and the intervention strategies for addressing such ssues. The training and skills provided to social workers through their graduate

ducation makes them uniquely suited to work with cancer patients. First, he social work profession is distinctive in its use of a person-in-

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etween the person and his or her environment, and how he or she is nfluenced by interactions with the environment. Social workers view ndividuals as being dynamically involved with systems in the environ- ent that include family, friends, work, social service organizations,

eligions, health care, educational, government, and culture, to name a ew. The person in his or her environment is a whole in which the person nd the situation are both cause and effect in a complex set of elationships. The social worker does not assess the person and then his r her environment; rather, social workers advocate treatment of the erson within the context of his or her environment. When seeking to ddress the psychosocial needs of a client, the social worker directs the ntervention at improving the interactions between the person and his or er environment. In regard to oncology social workers, this unique approach provides the

ocial worker with assessment skills that “reflect a patient’s place in a roader environment of relationships, resources, and copying history vailable to him as he struggles to integrate his prognosis and meet the emands of treatment.”27 The resulting assessment “communicates that he social worker is interested in the patient as a person who has a valued ife beyond cancer treatment.”27 Furthermore, it assists in creating and mplementing interventions aimed at concurrently strengthening the lient’s adaptation to being diagnosed with cancer, as well as strength- ning the environment’s responsiveness to that individual’s needs.26

The second aspect of social work training that prepares oncology ocial workers for their work is the practice of defining the unit of care s both the client and his or her family. This aspect evolves from the erson-in-environment approach and, as has been found by research- rs, recognizes that family members of cancer patients are also mpacted by a cancer diagnosis, particularly when the cancer is dvanced and incurable. Research has shown that providing care and upport to a loved one at the end of life can be both emotionally and hysically challenging; therefore, recognizing and being sensitive to amily members’ needs are crucial.28

Finally, advocacy and resource acquisition are also skills possessed by ocial workers, which relate directly to the work performed by those orking with individuals diagnosed with cancer. Individuals with ad- anced cancer may lack the strength necessary to advocate for their references concerning care and treatment provided. The oncology social orker can step in and serve as an advocate for the client with family embers and/or medical professionals, as well as advocate for family

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hat the social worker be skilled at acquiring the resources requested and eeded. Again, the person-in-environment approach comes into play in hat the social worker’s initial assessment of the client includes the nvironment in which he or she lives. Recognition of family, neighbor- ood, community, state, and federal systems provides the social worker ith knowledge of available resources and how to acquire them.

elationships with Oncologists on a Palliative are Team The growth of palliative care teams in hospitals has reportedly increased

rom 600� teams in the year 2000 to approximately 1500 in 2011, a rowth of about 138%.29 Data remain limited as to the effect of palliative are teams but some studies have found that family satisfaction is ncreased30; the benefit is greatest for home care,31 and experiencing egular oncological care along with the early involvement of the palliative are team can lead to increased quality of life and survival.4 Evidence is vailable, however, showing that nonmedical team members experience hallenges concerning communication and collaboration with team mem- ers. In particular, the nonmedical team members have been shown to xpress some dissonance because of the dominance of physicians around ecision-making.32 The discord experienced between medical and non- edical team members may be due in part to a lack of education

oncerning the expertise and skills that each professional brings to the eam. Education on the part of all disciplines should include such nformation, as well as more training on working effectively as a team. In regard to the relationship between physicians and social workers, the

raining provided to each differs. Physicians are trained to be team leaders nd to serve as the “final authority for all decisions,” a trait that is nderlined by the life and death decisions they make, as well as the ossibility of malpractice suits.33 By contrast, social workers are trained o “collaborate and build consensus on teams and that they are experts in ommunications and counseling” such that decision-making is to be hared.”33 In addition to the differences in their training, personality, level f self-confidence, and control needs can also present as challenges. Recognition of differences and strengths may serve to contribute to a ore collaborative relationship between oncologists and oncology social orkers. It is hoped that articles such as this one will increase the

wareness of the role that oncology social workers can play in meeting

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onclusions The training and education provided to oncologists often focus on how

o initiate discussions of patients’ psychosocial issues, as well as how best o address them. Research continues to show, however, that although ncologists recognize the importance of doing so, a large proportion of hem do not follow through in practice.5 Just as the oncology social orker’s expertise lies with assessing and developing interventions to

ddress the psychosocial needs of cancer patients, the expertise of the ncologist is to address the medical needs of these patients. Working ogether on interdisciplinary palliative care teams, oncologists and oncol- gy social workers can each bring their expertise to the table and insure hat cancer patients and their families receive the quality holistic care they o richly deserve.

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