The Breast Cancer Specific Patient Concerns Inventory [ PCI ] As a Means to Assist the Identification of Body Image Concerns in Routine Follow Up Clinics

Introduction: The aim of this work is to assess the role of the breast cancer (BC) specific Patient Concerns Inventory (PCI) in the identification of body image concerns in breast cancer patients. Materials and methods: A cross-sectional survey, using the BC specific PCI with an established breast cancer HRQOL measure (EORTC C30 with BR23). Results: Survey responses were obtained from 80% (200/249) of participants. There was significant correlation between the number of body image related items selected and the number of PCI items selected in other PCI domains, the total number of other PCI items selected and the total number of health professionals selected. Conclusions: The breast cancer specific PCI can be use as a screening tool for body image as well as for a range of other issues in order to identify a subgroup of patients that would benefit from focus interventions.


Introduction
Many changes to our appearance may occur through life.These may be planned or unplanned, desired or not [1] .There are several definitions of body image in the literature based on body size estimation, evaluation of body attractiveness, feelings associated with body size and shape [2] .The definition we use relates body image to a person's perceptions, feelings and thoughts about his or her body [2,3] .
Women treated for breast cancer endure scars and disfigurement of the breast, skin changes related to radiotherapy and/or hair loss due to chemotherapy [4,5] .These effects from the disease and its treatment are life changing and can lead to a significant alteration in body image [5,6] .In turn this effect on body image can result in undesirable Health-Related-Quality-of Life (HRQOL) changes that affect the transition from patient to breast cancer survivor [7][8][9][10][11][12] .Younger patients may be more susceptible to stress related to change in body image and report greater changes in HRQOL scores [11][12][13][14][15][16] .Brunet et al. [17] reported that women with breast cancer experienced various physical changes that negatively affected, their perceptions, thoughts, attitudes, feelings, and beliefs about their bodies.Based on these findings they highlighted the need to recognise body image concerns that could have a long lasting effect on the HRQOL.
The link between body image disturbance, lower self-compassion and an increase level of distress has been recognised by Przezdziecki et al. [18] .Specific treatment options such as mastectomy may adversely affect specific aspects of body image such as problems related to sexual intimacy [19] .Mastectomy may alter body image so much that can obliterate sexual relationships for a period of time [20] .Support in relation to sexuality and body image could improve relationships by modifying perceptions with a direct improvement in patient's and spouse's HRQOL [21] .Clinicians do not always elicit such concerns from patients.One way of improving recognition of these problems is to develop tools to improve clinicians' communication with patients.Cohen et al. [22] suggested that patients want honesty, openness, and directness from their physicians during the discussion of breast-related body image issues.Breast cancer patients rate the information on physical changes, sexual response and body image as very important.However, Ussher et al. [23] reported that only 41% of their patients obtained such information, hence only 34% of patients claimed to be satisfied with this aspect of their consultation.
Body image can affect a woman's treatment decisions with respect to surgical options such as mastectomy versus breast conserving surgery [24] .A multidisciplinary approach to address the impact of body image, with specific medical and psychosocial interventions has been analysed [25] .Younger patients take longer to make treatment decisions and require enhanced levels of support compared to older adults.The availability of breast reconstruction only partially ameliorates this effect [26] .
Body image changes associated with mastectomy, chemotherapy and radiotherapy are well recognised [27][28][29] .Up to a third of women report moderate or marked breast, arm, and shoulder symptoms over 5 years of follow-up after radiotherapy, and skin changes related to radiotherapy are well document in the literature [30] .However, these appear to have little impact on body image.As expected, adjuvant treatments [chemotherapy and radiotherapy] are associated with decrease in overall HRQOL, an increase in physical problems and adverse effects on the body image [31] .

During the past week have you lost any hair [Sprangers et al] [35]
During the past week have you felt physically less attractive as a result of your disease or treatment [Sprangers et al] [35]  During the past week have you been feeling less feminine as a result of your disease or treatment [Sprangers et al] [35]  During the past week did you find it difficult to look at yourself naked [Sprangers et  In other types of cancer, HRQOL tools have been used as a trigger for discussion of patients' problems of appearance [41] .HRQOL tools can help focus the consultation and are a suitable means of screening for appearance issues [42] .In head and neck cancer the Patient Concerns Inventory [PCI] has been used with HRQOL tool and its role has been defined [43] .
The PCI enables holistic evaluation of body image concerns in the breast cancer outpatient clinic [44] .The aim of this work is to assess the role of the breast cancer specific Patient Concerns Inventory (PCI) in the identification of body image concerns in breast cancer patients and compare this against an establish HRQOL such as the European Organization for Research and Treatment of Cancer breast cancer-specific quality of life questionnaire module (BR23).

Materials and Methods
We have performed a cross-sectional survey, using the BC specific PCI with an established breast cancer HRQOL measure [EORTC C30 (European Organisation for Research and Treatment of Cancer) with BR23].A convenience sample of 249 breast cancer patients was recruited prospectively from February to July 2012.The patients had completed their initial treatments and were attending an outpatient clinic for review.All patients were recruited by the clinical team but participants completed the questionnaires at home.Prospective study participants received a study information pack containing details about the study and the BC specific PCI.The BC specific PCI [44] has two parts and includes 55 items that are divided into six groups.In the first part the groups include general information, body image-related, physical functioning and health-related, psychological state and emotional well being, sexual functioning and social functioning / family-related.In the second part there is a list of the members of the breast cancer MDT that the patients are given the option to consult, either in the clinic or by referral.The Body image -specific domains include overall physical appearance, arm appearance, breast appearance, breast prosthesis / padding, hair loss, hair replacement (wig), mastectomy appearance, weight and wound healing (scar appearance).
Also the pack included a consent form and a reply slip.Study participants also gave consent for the chief investigator to collect social and treatment-related data from their clinical files.Approval for this study was granted by the Leeds Central Ethics Committee.
Statistical analysis was performed using SPSS version 19. the distribution of PCI body image related items (range 0-9) was analysed using the Mann-Whitney test.Patient/clinical subgroups was compared by the number of body image related items selected using the Kruskal-Wallis or Mann-Whitney test as appropriate.the association of number of PCI Body image related items with number of other PCI items selected overall or within domain and with number of health professionals selected, and with EORTC scores was assessed using Spearman rank correlation methods.In view of the multiple tests performed, statistical significance was taken as P<0.01.

Discussion
To our knowledge this is the first study in which the BR23 questionnaire and the PCI have been used in combination to screen for body image problems in patients with breast cancer.Although several important points have been raised we must recognise that there are limitations to this study.The study involved a limited number of patients from one area in the United Kingdom, and the results may reflect the beliefs and practice of this group.The present study is limited by the cross-sectional nature of the data.More longitudinal studies need to focus on body image and need to examine whether body image state will eventually return to values similar to those before the breast cancer diagnosis.Body image should not be seen in isolation.There is a need to examine any possible associations with sexual function and quality of life.In this study there were weak correlations between the number of PCI body image items and the EORTC tool.A limitation of this study is that a specific body image scale would have been appropriate [4] .Items such as change in self-consciousness with appearance, less sexually attractive, less feminine, dissatisfaction with appearance when dressed, body feeling less whole that are present in the QOL BR23 were not assessed in our study.
The body can be viewed as a symbol of social expression [45] .Breast cancer diagnosis and treatment can result in a sustained disturbance of that view at 12 months post -diagnosis and beyond [46] .This is reflected in this study since 54% of patients had their diagnosis at least two years ago.Body image is clearly an issue since 68% of patients selected an item from the body-image domain.In this study the number of body image related items was significantly associated with chemotherapy and mastectomy and reconstructive surgery.Some studies showed that chemotherapy, hormonal therapy and radiotherapy did not have a negative effect on body image [47] .The findings from this study are consistent with , Schover et al. [48] who concluded that chemotherapy did have a negative impact on body image, while hormonal and radiation therapy did not.Breast appearance was the item most frequently selected followed by weight and mastectomy appearance.This is not unexpected since the physical effects of cancer on the body is a personal reminder of the disease but in addition is an 'announcement' to others [49] .Yurek et al. [50] reported that those patients who underwent a lumpectomy faced less body change stress than women with a modified radical mastectomy with breast reconstruction or just a modified radical mastectomy.
In this work only 14% of patients selected hair loss.This may seem low at first instance.This may be explained, because most patients in this study did complete the PCI several months after their chemotherapy when their hair were almost back to the pre-treatment state.
As it can be seen on table 3 those patients selecting body image related items selected a median of 17 other items.The effect of breast cancer on body image should not be under-estimated, and this is reflected by others.Fallow field et al. [51] found that the incidence of anxiety and/or depression was as high as 38% in patients with a surgical intervention.Age seem to have a negative correlation with the items detected.
In this study fewer times were selected by older patients and this is consistent with other published work.Al-Ghazal et al. [52] compared the psychological outcome and satisfaction of patients whom underwent wide local excision, mastectomy alone and mastectomy with breast reconstruction.This study reported that women of different ages face body image issues after breast cancer surgery, with women between 40 and 59 years of age appearing to have the greatest body image issues after breast cancer surgery.
The head and neck PCI has been used before as a tool to identify appearance-related concerns [53] .Appearance was raised on the PCI at 9% (42/454) of clinics, and at 10% (47/454) it was indicated as a serious problem on the UW-QoL questionnaire.Concerns about appearance were raised on the inventory or were shown to be a serious problem on the UW-QoL in 14% (64/454) of patients.Comparison with that work requires caution since appearance was related to face, involved male patients and patients with

Baxter et al] [36] I am satisfied with the appearance of my hips [Baxter et al] [36] I am satisfied with the shape of my buttocks [Baxter et al] [36] I feel comfortable looking at my mastectomy [Baxter et al] [36] I am happy with the position of my nipple [Baxter et al] [36] I feel satisfied with the size of my breast [Baxter et al] [36] Table 1:Body image -related domain
al] [35] During the past week have you been dissatisfied with your body [Sprangers et al] [35] I avoid looking at my scars from breast surgery [Baxter et al] [36] I am satisfied with the shape of my body [Baxter et al] [36] I feel less feminine since cancer [Baxter et al] [36] I Like my body [Baxter et al] [36] I feel comfortable about the way I look when exercise [Baxter et al] [36] I would feel comfortable changing in a public change-room [Baxter et al] [36] I feel my body has been invaded [Baxter et al] [36] I am satisfied with the appearance of my arm [

Table 2 :
Body image related items selected on the PCI

Table 3 :
Median [IQR]and total number of items selected on the PCI, by number of body image related items selected.

Table 4 :
Percentage selecting other specific PCI items and health professionals, by number of PCI body image related items selected Breast Cancer Specific Patient Concerns Inventory B13 Information about personal hygiene [Maybe related to breast prosthesis/wig] Whitney test comparing the full distribution [range 0-9] of body image related items for specific PCI items being selected Vs. not selected.

Table 5 :
Clinical/personal characteristics and selection of PCI body image related items Body table gives % [n] of row totals Number of Body image related items selected

Table 6 :
Number of body image related items by treatment 1: Issue 1 www.ommegaonline.com

Table 7 :
Number of PCI Body image related items and summary scores from the EORTC QLQ-C30 and EORTC breast cancer module QLQ-BR23