Association Between Body Image Dissatisfaction and Weight Loss Among Patients With Advanced Cancer and Their Caregivers: A Preliminary Report

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1 Vol. 45 No. 6 June 2013 Journal of Pain and Symptom Management 1039 Original Article Association Between Body Image Dissatisfaction and Weight Loss Among Patients With Advanced Cancer and Their Caregivers: A Preliminary Report Wadih Rhondali, MD, Gary B. Chisholm, MS, Maryam Daneshmand, MHA, Julio Allo, MPH, Duck-Hee Kang, PhD, RN, Marilene Filbet, MD, David Hui, MD, Michelle Cororve Fingeret, PhD, and Eduardo Bruera, MD Department of Palliative Care and Rehabilitation Medicine (W.R., M.D., J.A., D.H., E.B.), Department of Biostatistics (G.B.C.), and Department of Behavioral Science (M.C.F.), The University of Texas M. D. Anderson Cancer Center, Houston; School of Nursing (D.-H.K.), The University of Texas Health Science Center at Houston, Houston, Texas, USA; and Department of Palliative Care (W.R., M.F.), Centre Hospitalier de Lyon-Sud, Hospices Civils de Lyon, Lyon, France Abstract Context. No prospective studies have dealt with the impact of cachexia-related weight loss on patients body image as well as the impact of patients body image changes on the level of patient and family distress. Objectives. Our aim was to examine associations between body mass index (BMI), weight loss, symptom distress, and body image for patients with advanced cancer and their caregivers. Methods. Outpatients with advanced cancer and different levels of BMI, along with their caregivers, were recruited. Patient assessments included BMI, precancer weight, Body Image Scale (BIS; 0e30), Edmonton Symptom Assessment System (ESAS), Hospital Anxiety and Depression Scale (HADS), and sexual interest and enjoyment as measured by the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Head and Neck Cancer Module 35. Caregivers were asked to assess the patient s body image, using the BIS; rate their own quality of life, using the Caregiver Quality of Life Index-Cancer; and rate their overall distress and distress regarding the patient s weight, using the Distress Thermometer (DT). Results. We included 81 patients and 30 caregivers. Forty-eight patients (59%) experienced weight loss of at least 10%. The mean BIS score was (SD ¼ 7.24). Body image dissatisfaction was correlated with weight loss (r ¼ 0.31, P ¼ 0.006), anxiety (HADS-A; r ¼ 0.39, P < 0.001), depression (HADS-D; r ¼ 0.46, P < 0.001), decreased sexual interest (r ¼ 0.37, P ¼ 0.001), decreased sexual enjoyment Results of this article were partially presented at the Annual Meeting of the European Association of Palliative Care, Trondheim, Norway, June 9, Address correspondence to: Eduardo Bruera, MD, Department of Palliative Care and Rehabilitation Medicine, Unit 1414, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030, USA. ebruera@ MDanderson.org Accepted for publication: June 3, Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved /$ - see front matter

2 1040 Rhondali et al. Vol. 45 No. 6 June 2013 (r ¼ 0.33, P ¼ 0.004), ESAS score for pain (r ¼ 0.25, P ¼ 0.026), fatigue (r ¼ 0.28, P ¼ 0.014), drowsiness (r ¼ 0.28, P ¼ 0.014), shortness of breath (r ¼ 0.27, P ¼ 0.016), sleep disorders (r ¼ 0.24, P ¼ 0.036), and well-being (r ¼ 0.29, P ¼ 0.011). We found a significant association between the caregivers evaluation of patients body image dissatisfaction and patients BIS score (r ¼ 0.37, P ¼ 0.049) and caregivers distress regarding the patients weight (DT; r ¼ 0.58; P ¼ 0.001). Conclusion. Body image dissatisfaction was strongly associated with patients weight loss and with psychosocial distress among patients and their caregivers. More research is necessary to better understand the association between the severity of body image dissatisfaction and the severity of other problems in patients with cancer. J Pain Symptom Manage 2013;45:1039e1049. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Weight loss, cachexia, advanced cancer, body image, palliative care Introduction More than 80% of patients with cancer will develop cachexia before death. 1 Cachexia is defined as a multifactorial syndrome characterized by an ongoing loss of skeletal muscle mass (with or without the loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment. 2 Cachexia has been reported to be an independent risk factor for decreased survival in patients with advanced cancer (locally recurrent and/or metastatic with no chance of cure) 3 and has major physical, 4 psychological, and social consequences. 5,6 Furthermore, nutritional aspects (i.e., weight loss and appetite) are important concerns for patients with cancer 7 and their families. 6,8 Weight loss is the main clinical finding in patients with cancer-related cachexia and can be easily identified by patients, caregivers, and health care professionals. 9 Substantial weight loss occurs in approximately 80% of patients with advanced cancer 10 and can generate severe distress in patients and their families. 6,11 In patients with advanced cancer, weight loss is often associated with disease progression. 12e16 Weight loss is predominantly associated with poor quality of life and decreased survival in patients with cancer. 11,17e21 Body image can be defined as perceptions, thoughts, or emotions about one s physical appearance. 22 Although body image forms fully by adulthood, it is subject to change as the body changes with age, disease, or disability. 23e27 Cancer and its treatments can have a significant impact on patients appearance and body image, especially in cancers of the head and neck or the breast. Hinsley and Hughes 28 reported that weight loss can be interpreted by patients and their families as a visible sign of cancer and its progression and that these changes in appearance result in patients avoiding social activities and increased distress. Furthermore, the fact that these changes can be reversible also might have an impact on how patients will cope. 22 No prospective studies have looked at the impact of cachexia-related weight loss on patients body image as well as the impact of patients body image changes on the level of patient and family distress. The aim of this study was to evaluate the association between current body mass index (BMI) and body image satisfaction in patients with advanced cancer. Our secondary aims were to examine associations between precancer BMI, weight loss, anxiety, depression, sexual interest and enjoyment, and body image in patients with advanced cancer and to assess the impact of the body image changes related to weight loss on caregiver distress. Our hypothesis was that weight loss will lead to body image dissatisfaction and that body image dissatisfaction will increase the level of patient and family distress. Methods The Institutional Review Board at The University of Texas M. D. Anderson Cancer Center approved this study, and all patients and caregivers gave written informed consent.

3 Vol. 45 No. 6 June 2013 Weight Loss and Body Image in Advanced Cancer Patients 1041 Patients Patients who attended the Supportive Care Clinic at The University of Texas M. D. Anderson Cancer Center for a consult between July 11, 2011 and August 25, 2011 were screened and subsequently approached if deemed eligible for this study while they were waiting for their consult. Inclusion criteria were a diagnosis of advanced cancer (defined as locally recurrent and/or metastatic with no chance of cure), and age 18 years or older. Patients with impaired cognition and non-english speaking patients and caregivers were excluded. Patients were explained the goal of the study, and if they agreed to participate, they were led to a private room by the research assistant to complete the assessments. They were left alone to answer the questions, which took approximately 20 minutes. The questionnaire was returned to the study coordinator after completion. We stratified the population based on BMI (underweight # 18.5 kg/m 2 ; overweight $ 25 kg/m 2 ; and normal weight, 18.6e24.9 kg/ m 2 ), and we planned to enroll 27 patients in each of the three groups. Ninety-two patients were approached for the study, and 81 were included. Eleven patients refused to participate (four were not interested, five were too tired, and two were in pain). The most common types of cancer were gastrointestinal and lung cancer. The median time from cancer diagnosis was 2.3 years (interquartile range ¼ 1.2e4.7 years). Patients caregivers were asked to participate if they were present at the time of the assessment. If they were not present or did not want to participate, the patient alone was invited to participate. If caregivers chose to participate, they were asked to complete the assessment independently from the patient. Forty-two patients came with their caregivers to the clinic, and 30 caregivers were included in the study (11 caregivers refused, and one did not speak English). Twenty-four caregivers (80%) were the patient s spouse. The mean length of time spent each day providing care to the patient was 13 hours (interquartile range ¼ 4e24 hours). Patients and caregivers characteristics are described in Table 1. Measures The research assistant collected the following patient data from medical records: age, sex, ethnicity, marital status, education level, and cancer diagnosis. We asked all the patients to recall their precancer weight (adult weight six months before the cancer diagnosis), and we measured their current weight on the day of study. The assessment items completed by the patients are summarized in Table 2. Body image satisfaction was quantified using the Body Image Scale (BIS). 29 The BIS is a 10- item scale designed to assess satisfaction with changes in appearance resulting from cancer and its treatment. This scale has been validated in patients with breast cancer, with good psychometric properties (internal consistency with Cronbach s a of 0.93), but it is reported to be applicable for patients with cancer at any site and for patients receiving various treatments. 25,26,29e32 The BIS includes affective items (e.g., feeling less physically attractive), behavioral items (e.g., avoiding people because of the one s feelings about appearance), and cognitive items (e.g., feeling selfconscious about appearance). Patients were asked to report any changes since diagnosis or treatment by rating each item as 0 (not at all), 1 (a little), 2 (quite a bit), and 3 (very much). High BIS scores indicate greater dissatisfaction with appearance. Hopwood et al. 33 suggested using a BIS score of 10 of 30 as a clinical cut-off for body image dissatisfaction. 31 We also asked patients two questions from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Head and Neck Cancer Module 35 (EORTC QLQ-H&N35) (questions 59 and 60). These two questions assess the patient s interest in sexuality and level of sexual enjoyment. 34 We decided to only use these two questions for eliciting preliminary data on the link between body image dissatisfaction and sexual interest and enjoyment. Symptom burden was documented using the Edmonton Symptom Assessment System (ESAS) and the Hospital Anxiety and Depression Scale (HADS). The ESAS measures the response to 10 items (pain, fatigue, nausea, depression, anxiety, drowsiness, shortness of breath, appetite, sleep disorders, and feeling of well-being) in patients with cancer. Patients rate the intensity of these symptoms or feelings over the past 24 hours using an 11-point numeric rating scale that ranges from 0 (no symptom) to 10 (worst possible symptom). 35e39

4 1042 Rhondali et al. Vol. 45 No. 6 June 2013 Table 1 Characteristics of Patients With Advanced Cancer Recruited From a Supportive Care Clinic and Their Caregivers Characteristic Patients (N ¼ 81) n (%) Caregivers (N ¼ 30) n (%) Age, years, mean (SD) 54 (14) 56 (14) Female sex 47 (58) 20 (67) Married 50 (62) 25 (83) Ethnicity White non-hispanic 49 (61) 22 (74) Hispanic 9 (11) 4 (13) African American 21 (26) 3 (10) Other 2 (2) 1 (3) Highest education level High school or below 36 (44) 11 (37) Any college undergraduate education 28 (35) 12 (40) Any advanced postgraduate education 12 (15) 7 (23) Missing 5 (6) 0 (0) Cancer diagnosis Breast 8 (10) Gastrointestinal 18 (22) Genitourinary 4 (5) Gynecologic 7 (8) Head and neck 11 (14) Hematologic 3 (4) Respiratory 18 (22) Other 12 (15) Time from cancer diagnosis # 3 months 6 (7) 3e6 months 4 (5) 7e12 months 5 (6) 1e2 years 20 (25) > 2 years 46 (57) Patients body composition BMI 6 months before cancer diagnosis, kg/m 2, mean (SD) 27.5 (7.3) Current BMI, kg/m 2, mean (SD) 23.2 (6.8) Body image outcome BIS score, mean (SD) 11.2 (7.2) Patients weight loss Weight lost in the past 6 months, (kg), [mean (SD)] 48 (59) Loss of $ 10% of previous weight in the past 6 months 54 (14) BMI ¼ body mass index; BIS ¼ Body Image Scale; 1 kg ¼ 2.2 lbs. This questionnaire has been validated in cancer populations. 38e40 The HADS is a 14-item scale with separate subscales for anxiety (HADS-A) and depression (HADS-D). It has been validated in patients with cancer for the diagnoses of depression and anxiety 41 and can be administered or used as a self-assessment tool. Scores greater than or equal to 8 are suggestive of anxiety or depression. We decided to use the HADS as a complement to the ESAS for depression and anxiety assessment to collect more detailed information regarding psychological distress. Patients were asked to rate their current satisfaction with their body image compared with their satisfaction with their preillness body image using a five-point Likert scale ranging from 1 (much worse) to 5 (much better); to rate the importance of body image changes compared with five symptoms (pain, fatigue, depression, insomnia, and lack of appetite) using a fivepoint Likert scale ranging from 1 (much Table 2 Instruments and Their Corresponding Concepts Instruments Corresponding Concept Edmonton Symptom Assessment Scale Hospital Anxiety Depression Scale Body Image Scale EORTC QLQ-H&N35 (2 questions) Body image change as compared with other symptoms (1 question) Physical and psychosocial distress Psychosocial distress Body image dissatisfaction Sexual interest and sexual enjoyment Importance of body image changes as compared to several others symptoms EORTC QLQ-H&N35 ¼ European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Head and Neck Cancer Module 35.

5 Vol. 45 No. 6 June 2013 Weight Loss and Body Image in Advanced Cancer Patients 1043 more important) to 5 (much less important); and to define the causes of the main changes in their body image (weight loss compared with other causes such as scars or hair loss) using a five-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Using a Likert rating scale for body image assessment provided detailed information on the level of change associated with each item, which was important for us because of the exploratory nature of this study. Caregivers A research assistant collected the following caregiver data: age, sex, ethnicity, marital status, education level, relationship to the patient, perceived social support from the caregiver s perspective, and the length of time providing care. Caregivers were asked to assess how they perceived the patients body image satisfaction using the BIS and to rate their overall distress and their specific distress regarding the patient s weight, using the Distress Thermometer (DT). 42 Caregivers also were asked to assess their quality of life using the Caregiver Quality of Life IndexeCancer; 43 to rate the importance of the patient s body image changes compared with five symptoms (pain, fatigue, depression, insomnia, and lack of appetite) using a five-point Likert scale ranging from 1 (much more important) to 5 (much less important); and to define the causes of the main changes in the patient s body image (weight loss compared with other causes, such as scars and hair loss) using a five-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Statistical Analyses We report categorical variables with frequencies and percentages. We tested the distributions of the continuous variables using the Kolmogorov-Smirnov test and found most to be non-normally distributed. We report continuous variables by their means and SDs if they were normally distributed; if they were not normally distributed, we report the median and the first and third quartiles, and we analyzed the data using nonparametric methods. Spearman correlation coefficients were calculated for the continuous variables. Differences in the demographic variables by weight loss category (i.e., patients who lost at least 10% of their usual body weight and patients who did not) and the effect of weight loss on outcome measures (body image dissatisfaction, patient s and caregiver s distress) were tested using Mann- Whitney U tests, c 2 tests, and Fisher s exact tests. Multiple linear regressions were used to produce a multivariable model for the prediction of the final BIS score. All our results were exploratory, and we did not apply any correction for the multiple comparisons. P-values less than 0.05 were considered statistically significant. Results Patients Body Composition We stratified patients into three groups according to their current BMI (underweight # 18.5 kg/m 2 ; overweight $ 25.0 kg/m 2 ; and normal weight, 18.6e24.9 kg/m 2 ); each group had 27 patients. The mean SD current BMI was 23.2 kg/m kg/m 2, and the mean SD precancer BMI was 27.5 kg/m kg/m 2. Forty-seven patients were previously overweight, 31 patients previously had normal weight, and only three patients were previously underweight. Fortyeight patients (59%) lost at least 10% of their usual weight during the previous six months (mean SD ¼ kg kg). Of the 81 patients surveyed, only four (5%) had their weight remain stable, and 14 (17%) gained some weight (mean SD ¼ 8.51 kg 4.98 kg). Overweight patients were found to be significantly younger (r ¼ 0.24, P ¼ 0.034) and to have experienced less weight loss (r ¼ 0.27, P ¼ 0.017) than normal weight or underweight patients (Spearman correlation). Patients with breast cancers were significantly overrepresented in the overweight category, and patients with gastrointestinal and lung cancers were overrepresented in the underweight and normal weight categories (Fisher s exact test; P ¼ 0.031). Body Image Satisfaction The mean SD BIS score for all patients was The individual BIS items that most often scored high were question 2 ( Have you felt less physically attractive as a result of your disease or treatment? ), with 37 patients (46%) scoring 2 or 3, and question 6 ( Have you been feeling less sexually attractive

6 1044 Rhondali et al. Vol. 45 No. 6 June 2013 as a result of your disease or treatment? ), with 38 patients (47%) scoring 2 or 3. Table 3 compares patients who experienced body image dissatisfaction (BIS score $ 10) with patients who did not. We did not find any difference between body image dissatisfaction and BMI (Mann-Whitney U test; P ¼ 0.483). We found a significant association between body image dissatisfaction (BIS score) and patient age (r ¼ 0.23, P ¼ 0.043), weight loss of at least 10% of their usual weight (r ¼ 0.31, P ¼ 0.006), anxiety (HADS-A: r ¼ 0.39, P < 0.001), depression (HADS-D, r ¼ 0.46, P < 0.001; ESAS depression: r ¼ 0.32, P ¼ 0.005), decreased sexual interest (r ¼ 0.37, P ¼ 0.001), decreased sexual enjoyment (r ¼ 0.33, P ¼ 0.004), ESAS score for pain (r ¼ 0.25, P ¼ 0.026), fatigue (r ¼ 0.28, P ¼ 0.014), drowsiness (r ¼ 0.28, P ¼ 0.014), shortness of breath (r ¼ 0.27, P ¼ 0.016), sleep disorders (r ¼ 0.24, P ¼ 0.036), and decreased feeling of well-being (ESAS item for feeling of well-being; r ¼ 0.29, P ¼ 0.011) (Spearman correlations). Patients experiencing weight loss of at least 10% of their usual weight reported higher deterioration of their body image than did other patients ( Regarding your weight, how is your body image today as compared with as it was before you became ill with cancer? ) (P ¼ 0.001). However, 11 (23%) of the 48 patients who had lost at least 10% of their usual weight reported better or much better body image, and seven (63%) of these 11 patients were previously overweight or obese (Table 4). Body Image and Other Symptoms Body image change was considered as less important than any of the five symptoms with which patients were asked to compare it. No Table 3 Comparison of Patients With Body Image Dissatisfaction and Patients Without Body Image Dissatisfaction Patient Characteristics BIS < 10, n ¼ 34 BIS $ 10, n ¼ 47 P-value Female, n (%) 16 (47) 31 (66) a Age (mean [SD]) 58 (15) 52 (13) b BMI (mean [SD]) 23.5 (5.7) 23.0 (7.5) b Loss of $ 10% of previous weight during the last 6 month, n (%) 14 (41) 34 (72) a Symptom burden (median, Q1eQ3) HADS-A 6 (3e8) 8 (6e13) <0.001 b HADS-D 4 (2e7) 8 (5e11) <0.001 b Pain 3 (2e5) 5 (3e8) b Fatigue 4 (2e6) 5 (4e8) b Nausea 0 (0e3) 1 (0e4) b Depression 0 (0e3) 2 (0e6) b Anxiety 0 (0e3) 2 (0e5) b Drowsiness 2 (0e4) 3 (2e6) b Shortness of breath 1 (0e4) 4 (1e7) b Lack of appetite 3 (1e6) 5 (2e7) b Sleep disorders 4 (1e5) 5 (2e7) b Feeling of well-being 2 (1e5) 5 (3e6) b As a consequence of your weight loss, less interest in sex, n (%) Not at all 22 (64) 14 (29) c A little 4 (12) 9 (19) Quite a bit 4 (12) 11 (23) Very much 2 (6) 10 (21) As a consequence of your weight loss, less sexual enjoyment, n (%) Not at all 20 (58) 13 (28) c A little 3 (9) 7 (15) Quite a bit 6 (18) 10 (21) Very much 3 (9) 13 (28) The changes in my weight are the main reason for the change in my body image, n (%) Mostly or strongly disagree 13 (39) 6 (13) c Neither agree or disagree 9 (26) 18 (38) Mostly or strongly agree 12 (35) 23 (49) Q1eQ3 ¼ first and third quartiles; HADS-A ¼ Hospital Anxiety and Depression Scale-Anxiety; HADS-D ¼ Hospital Anxiety and Depression Scale- Depression. a Chi-square test. b Mann-Whitney test. c Fisher s exact test.

7 Vol. 45 No. 6 June 2013 Weight Loss and Body Image in Advanced Cancer Patients 1045 Table 4 Comparison of Body Image Outcomes Between Patients Who Did and Did Not Lose at Least 10% of Their Usual Body Weight Variable No Substantial Weight Loss (n ¼ 33) Substantial Weight Loss (n ¼ 48) BIS score (mean, [SD]) 9.3 (7.3) 12.6 (7.0) a Age [mean (SD)] (14.56) (12.59) a HADS-A (median, Q1eQ3) 7 (4e10) 7 (4e10) a HADS-D (median, Q1eQ3) 4 (3e9) 8 (5e11) a Cancer category, n (%) Breast 7 (21) 1 (2) <0.001 b Gastrointestinal 2 (6) 16 (33) Genitourinary 0 (0) 4 (12) Gynecologic 2 (6) 5 (15) Head and neck 5 (15) 6 (13) Hematologic 0 (0) 3 (6) Respiratory 7 (21) 11 (23) Other 10 (30) 2 (4) Regarding your weight, how is your body image today as compared with what it was before you became ill with cancer, n (%) Much worse 4 (12) 23 (48) b A little bit worse 12 (36) 7 (15) Same 11 (33) 7 (15) A little bit better 5 (15) 5 (10) Much better 1 (3) 6 (13) BIS ¼ Body Image Scale; HADS-D ¼ Hospital Anxiety and Depression Scale-Depression; HADS-A ¼ Hospital Anxiety and Depression Scale-Depression-Anxiety. a Mann-Whitney test. b Fisher s exact test. P difference in responses to these questions was seen between patients who lost at least 10% of their body weight and patients who did not. Of the 81 patients, body changes were considered less important than pain for 57 (70%), less important than fatigue for 50 (62%), less important than depression for 53 (65%), less important than insomnia for 55 (68%), and less important than appetite for 52 (64%). As the main reason for their body image changes, 35 patients reported weight loss, five reported scars, three reported hair loss, and three reported the presence of tumors; 17 patients did not specify the main reason for their body image changes. Eighteen patients reported that their body image did not change with cancer and its treatment. Predictors of BIS Score We used backward-stepwise elimination to select the main predictors for BIS score. Our set of possible predictors was chosen based on biological relevance as it was not possible to include all variables in the model. The predictors we chose were previous body weight, age, gender, HADS-A, HADS-D, sexual interest, sexual enjoyment, pain, fatigue, drowsiness, feeling of well-being, and shortness of breath. Table 5 shows the results of multiple regressions (parametric and multiple linear regression), which indicated that four variables were significant predictors of high BIS scores: age (each point increase in age corresponded to a 7% reduction in the odds of a high BIS score; P ¼ 0.045), shortness of breath (each point increase on the ESAS question about shortness of breath corresponded to a 29% increase in the odds of a high BIS score; P ¼ 0.006), sexual interest (each point increase on the EORTC QLQ-H&N35 question about sexual interest corresponded to a 170% increase in the odds of a high BIS score; P ¼ 0.004), and depression (each point Table 5 Multivariate Regression Model for BIS >10 in 81 Patients With Advanced Cancer Adjusted Logistic Regression High BIS vs. Low BIS (reference) a Variable Odds Ratio 95% CI Age (per year) , Shortness of breath (ESAS) , Sexual interest , Depression (HADS-D) , BIS ¼ Body image Scale; BMI ¼ body mass index; ESAS ¼ Edmonton Symptom Assessment System; HADS-D ¼ Hospital Anxiety and Depression Scale-Depression. a High BIS is defined at BIS $ 10. P

8 1046 Rhondali et al. Vol. 45 No. 6 June 2013 increase on the HADS-D corresponded to a 42% increase in the odds of a high BIS score; P ¼ 0.001). Caregivers Outcomes Table 6 summarizes the caregivers outcomes, comparing those reporting patients body image dissatisfaction with those who did not. We found significant correlation between caregivers evaluation of patients body image dissatisfaction (caregivers BIS score > 10) and patients BIS score (r ¼ 0.37, P ¼ 0.049) as well as caregivers distress regarding the patients weight (DT; r ¼ 0.58, P ¼ 0.001), and there was a trend for caregivers quality of life (Caregiver Quality of Life IndexeCancer; r ¼ 0.36, P ¼ 0.052). The caregivers distress regarding patients weight significantly correlated with the magnitude of weight loss (r ¼ 0.50, P ¼ 0.005) and with patients depression (HADS-D; r ¼ 0.47, P ¼ 0.008) (Spearman correlations). As did patients, caregivers rated body image change as less important than the other symptoms, with no difference between weight loss categories. Eleven caregivers reported weight loss as the main reason for patients relative body image changes, two reported scars, one reported hair loss, and four reported the presence of tumors. Discussion In this study, our aims were to evaluate the association between BMI and body image dissatisfaction and to examine associations between weight loss, anxiety, depression, and sexual interest and enjoyment in patients with advanced cancer. Our findings clearly show that the intensity of body image dissatisfaction was higher than what has been reported for other populations, such as head and neck cancer, breast cancer, or prostate cancer patients (which ranged from 2.51 [SD ¼ 3.14] to 7.78 [SD ¼ 5.16]). 25,26,29,31 Our results also indicate that body image dissatisfaction was clearly higher in a population with weight loss and was strongly associated with psychosocial distress (anxiety and depression). Therefore, screening for body image concerns should rely more on the presence or absence of weight loss than on BMI category. Although patients and their caregivers reported body image change as significantly less important than other symptoms (pain, fatigue, depression, lack of appetite, and insomnia), body image does appear to contribute to general psychosocial well-being and is associated with a number of adverse psychosocial outcomes (anxiety, depression, decreased sexual interest and enjoyment, and poor caregiver quality of life). Indeed, there was significant association, both in the univariate and multivariate analyses, between body image and emotional distress, such as anxiety and decreased feeling of well-being. It is not possible to establish a causal relationship in a small study with a cross-sectional assessment; however, our data suggest that patients who report high and persistent levels of emotional distress Table 6 Comparison of Questionnaire Outcomes Between Caregivers of Patients With and Without Body Image Disturbances Caregiver and Patient Outcomes BIS < 10 a n ¼ 12 BIS $ 10 a n ¼ 18 P Total n ¼ 30 Patient BIS score [mean (SD)] 7.83 (6.0) 13.3 (7.3) b 11.1 (7.2) Caregivers outcomes [mean (SD); median, (Q1eQ3)] Caregiver quality of life 60 (14) 74 (21) b 68 (19) Caregiver distress 6 (1e8) 3 (2e6) b 4(2e6) Caregiver distress regarding weight 0 (0e4) 8 (3e9) b 5(0e8) Loss of $ 10% of previous weight during the last 6 month, n (%) 5 (41%) 14 (78%) c 19 (63%) The changes in my relative s weight are the main reason for the change in his/her body image, n (%) Strongly disagree c 0 Mostly disagree 6 (50) 1 (6) 7 (23) Neither agree or disagree 6 (50) 6 (33) 12 (40) Mostly agree 0 8 (44) 8 (27) Strongly agree 0 3 (17) 3 (10) SD ¼ standard deviation; Q1eQ3 ¼ first and third quartiles; BIS ¼ Body Image Scale. a Caregiver assessment of patient BIS. b Mann-Whitney test. c Fisher s exact test.

9 Vol. 45 No. 6 June 2013 Weight Loss and Body Image in Advanced Cancer Patients 1047 and weight loss also are likely to have body image dissatisfaction. Patients experiencing weight loss of at least 10% during the previous six months reported higher deterioration of their body image than did patients without such weight loss. However, 11 (23%) of 48 patients with substantial weight loss reported better or much better body image, and seven of these 11 patients were previously overweight or obese. These findings suggest that a small percentage of patients might perceive involuntary weight loss as beneficial. These patients would be at a particular risk for negative cancer outcomes related to weight loss if they fail to seek help for this loss in weight. More research is necessary to confirm these preliminary findings. Our study had several limitations. The crosssectional design of the study did not allow us to define the nature of the relationship between body image dissatisfaction and the other outcomes (causality). The accuracy of the patients recall of their precancer body image is questionable, and results based on this measure should be interpreted with caution. Although several studies have reported that patients accurately recall their body weight over time, 44e46 the results of our study need to be confirmed with longitudinal studies. We used only two questions from the EORTC QLQ-H&N35 to assess sexual interest and enjoyment, and future research should use more complete tools to assess the association between sexuality, body image dissatisfaction and weight loss in patients with advanced cancer. Our sample size for the caregivers was small, and those findings also need further confirmation. Finally, this study was broad and involved a large number of statistical comparisons, which may result in an inflated type I error rate. However, this study is exploratory, and we hope to verify all significant findings in focused future studies; therefore, we did not explicitly adjust for multiple comparisons. In patients with advanced cancer, body image seems to be an important issue; however, there are few published data on the best way to assess and manage it. We believe these preliminary findings are important and can be helpful to clinicians who provide care to patients with advanced cancer. Our findings suggest that patients who experience a substantial weight loss with persistent or high symptom burden or psychosocial distress should be carefully monitored for body image dissatisfaction and provided with appropriate counseling to address the emotional impact of weight loss and with practical suggestions (e.g., regarding clothing, meaning of weight loss, and communication with caregivers) that might help them address their body image dissatisfaction. Our findings also suggest that the distress associated with involuntary weight loss is completely different from the positive psychological connotation of voluntary weight loss, probably because of the perception of life-threat by the patients and their families, even among those who are overweight or normal weight. More research is necessary to better understand the association between the severity of body image dissatisfaction and the severity of other problems in patients with cancer. To address these issues, research that includes the longitudinal follow-up of patients with cancer to collect data regarding patients weight changes as well as the different treatments leading to appearance modification, and to regularly assess patients body image during the course of their illness is necessary. More research is also necessary to determine the best way to address patients body image dissatisfaction and its related distress. Disclosures and Acknowledgments The study had no specific funding. Eduardo Bruera is supported in part by National Institutes of Health grants R01NR A1, R01CA , and R01CA The authors have nothing to disclose. References 1. Bruera E. ABC of palliative care. Anorexia, cachexia, and nutrition. BMJ 1997;315:1219e Fearon K, Strasser F, Anker SD, et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 2011;12:489e Trajkovic-Vidakovic M, de Graeff A, Voest EE, Teunissen SC. Symptoms tell it all: a systematic review of the value of symptom assessment to predict survival in advanced cancer patients. Crit Rev Oncol Hematol [Epub ahead of print]. 4. Moses AW, Slater C, Preston T, Barber MD, Fearon KC. Reduced total energy expenditure and

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