The impact and incidence of altered body image in patients with head and neck tumors: a systematic review

Abstract

Body image dissatisfaction is a common issue among patients with cancer and is associated with difficulty coping, anxiety, and depression. Patients with tumors involving the head and neck are at increased risk of body image dissatisfaction due to the visible disfigurement that can occur from their illness and its treatment. Patients with primary central nervous system (CNS) malignancies often face similar tumor-related and treatment-related effects, yet there is limited research conducted in this population. Our aim was to perform a systematic review of the literature on body image in patients with tumors of the head and neck, and identify factors associated with body image alterations during treatment, with the intention of applying these approaches to those with CNS disease. A systematic search of PubMed and EMBASE was performed using predefined criteria. Nine studies met the inclusion criteria and were selected for review. The literature collected showed a relationship between body image and age, depressive symptoms, and tumor grade or stage. In addition, body image disturbance had an impact on patients’ daily functioning and psychosocial indices including anxiety, coping, and body reintegration. Evaluation of the impact of body image alterations in patients with CNS tumors is needed to direct clinical care, explore research opportunities, and improve patient quality of life.

Body image is a multidimensional construct defined as one’s perceptions, thoughts, feelings, and behaviors related to the functioning and appearance of the entire body.^1–3 It encompasses both the perspective of one’s appearance based on self-observation, and the reaction of others.⁴ Importantly, body image is a subjective measure, and objective assessment of disfigurement or altered function may not correlate with an individual’s perception of impact. As a consequence, when addressing the concept of body image, it is critical to consider patients’ perspectives in addition to the appearance and functional changes observable to others.⁵

Body image is commonly regulated by the condition of the body and can be significantly impacted by a disease and its treatment. Cancer and associated therapies can result in destructive changes in the physical appearance, integrity, and function of the body, causing those with cancer to be at an increased risk for body image insecurities. Body image is recognized as a profoundly important psychosocial issue, but despite affecting a wide range of cancer patients, it is often neglected in clinical care.⁶ The concept of body image has been studied in oncology with the largest amount of research focusing on breast cancer patients. However, body image concerns have also been reported in patients with melanoma, head and neck, cervical, colorectal, hematologic, ovarian, prostate, renal, and testicular cancers.⁵ Studies in women with breast cancer have indicated an association between body image detriment and a decline in self-esteem and general quality of life,^7–10 which has been supported by research in other solid tumor malignancies. Analyses of the side effects of cancer treatment have also noted body image impacts. For example, hair loss caused by cancer treatment has been reported to negatively impact body image through associations with loss of sexuality, loss of attractiveness, and state of illness.^11–14 Throughout the literature, patients with body image concerns have also been found to be susceptible to psychosocial consequences such as depression, anxiety, difficulty with coping, and an overall poor quality of life.^3,15

The appearance and function of the cranium, central nervous system (CNS), face, head, and neck region are very important to daily social interactions. For this reason, several studies have focused on the impact of body image in patients with head and neck malignancies. Similarities exist between head and neck malignancies and CNS disease in terms of tumor-related dysfunction and treatment effects. In both populations, treatment can be associated with cranial deformities after surgery, hair loss, and skin changes from radiation and chemotherapy. Neurologic dysfunction, including facial asymmetry, dysphagia, and weakness requiring the use of assistance devices and adaptive equipment are common in the CNS population. However, despite their similarities, little is known about the impact of body image in primary CNS malignancies. Patients with CNS disease may be at additional risk for altered body image due to the common necessity for corticosteroids, which can significantly change patients’ appearance through weight gain, redistribution of body fat causing moon facies and “buffalo hump,” muscle atrophy, and fragile skin.

This is a potentially important area of quality-of-life research as 75% of surgically treated head and neck cancer patients experience some level of concern or embarrassment about their bodily changes, often resulting in psychosocial challenges.² The purpose of this report is to systematically review the literature on primary CNS and head and neck cancer patients to evaluate factors associated with the occurrence of body image alterations before, during, and after therapy, in order to identify areas of need and inform future clinical and research approaches. Our synthesis will provide a summary of the current state of the science related to identified risks and impact of altered body image in patients with tumors that involve the head and neck.¹⁶

Methods

PubMed and EMBASE were searched to capture relevant published studies on body image and brain tumors. The searches were not limited by language or publication year. Principal keywords included body image, brain tumor, brain cancer, and head and neck cancer. The search strategies as reported in Appendix 1 were adapted to accommodate the unique searching features of each database, including database-specific MESH and EMTREE controlled vocabulary terms as appropriate. The references of all included articles were searched to identify other related studies. The PubMed search retrieved 203 publications, EMBASE retrieved 129 publications, and three additional studies were found by review of references. Two authors (K.M., J.W.) performed the initial search and two authors (K.M., T.A.) reviewed the 259 references to select appropriate articles based on the criteria. Differences were resolved between reviewers’ extractions by discussion. Figure 1 outlines the final selection process.¹⁷ Full details of the exclusion and inclusion criteria are listed in Table 1.

Fig. 1.

Prisma flow diagram for systematic review of the impact and incidence of body image in patients with head and neck tumors.

Table 1.

Inclusion and exclusion criteria for the systematic literature review

Inclusion Criteria	Exclusion Criteria
1. Published qualitative studies, description studies, randomized trials, and systematic review 2. Human studies 3. English language 4. Adult patients 5. Head and neck cancers 6. Patient-centered outcomes	1. Case reports 2. Pediatric patients 3. Non-English language 4. Non-head and neck cancers 5. Disease-related outcomes

Results

In total, 14 head and neck cancer publications from 1998 to 2016 met the inclusion criteria, with no identified studies exploring body image in primary CNS tumor patients. Out of the 14 publications, 1 met the inclusion criteria but was excluded for being a systematic review that included only a subset of the reports included in this review. By excluding this review, it allowed us to synthesize the literature in its’ entirety and review the source manuscripts, not relying on the analysis provided previously. Of the remaining 13 identified studies in head and neck cancer patients, 7 studies focused on associated variables, 5 focused on the consequences, and only 1 explored both variables and consequences of body image alterations. Most of the studies included cross-sectional analyses (n = 7) with 5 descriptive, 1 mixed-methods, and 1 retrospective study design. Other studies included 2 qualitative reports (1 using phenomenology, and the other a mixed-methods analysis), a cohort study, a retrospective review, and a quasi-experimental design. Six studies required surgical treatment to be eligible for the study. Of these, 1 study required 100% of patients to have a concern with their appearance¹⁸ at study entry. Seven studies included patients that were newly diagnosed or planning to undergo disfiguring surgery. One study explored whether body image was noted by the medical professional at the time of self-report, and noted a lack of documentation regarding body image concerns in patients’ clinical records, despite patient report.¹⁹ Additional manuscript details are included in Table 2.

Table 2.

Review of body image articles

Author (Year)	Population/Sample Size	Primary objective	Type of Study/Instruments Used	Findings
Clarke, S. A.; Newell, R.; Thompson, A.; Harcourt, D.; Lindenmeyer, A. (2014)22	• 20 participants • Various head and neck cancers • United Kingdom • Primarily British Caucasian • Post-treatment • Participants identified with altered body image	• Investigate the relationship between psychological and demographic variable and appearance-related adjustment post-neck cancer (NC) in those who identified themselves as having a visible difference in appearance	Design: • Mixed-methods cross-sectional survey Instruments Used: • DAS-241 • HADS2 • FNE3 • Dispositional optimism • Social support • Qualitative accounts of appearance-related adjustment Other measures: • Age range and gender, marital status, ethnic group, HNC-type, treatment, prosthesis, primary area of appearance concern	Incidence: • Females had poorer appearance-related adjustment compared to males. • No significant correlations between age or head and neck cancer (HNC) type, anxiety, depression, or distress/dysfunction. • No significant difference between baseline and follow-up data for distress/dysfunction. • Lower distress/dysfunction was significantly correlated with lower anxiety, depression, psychological distress, more optimism, and more social support. Consequences: • Participants utilized coping strategies for body image alterations that included hiding disfigurement, focusing on positive aspect, and giving less importance to appearance.
Dropkin (1999)26	• 117 participants • Various head and neck cancers • United States • Primarily males and Caucasian • Pre- and post-treatment	• Describe body image reintegration as it related to quality of life in the surgical head and neck cancer patient population	Design: • Cohort study Instruments Used: • Ways of Coping Questionnaire • The State Trait Anxiety Inventory • Disfigurement/Dysfunction Scale • Coping Behaviors Score Other measures: • Anxiety and anticipation of disfigurative surgery	Risk factors: • Body image reintegration (coping effectiveness) was significantly lower when disfigurative surgery was anticipated. • Body image reintegration was significantly lower if participant had previous radiation or chemotherapy treatment. • Trait anxiety (prior to surgery) scores were lower than state anxiety (post-surgery) scores.
Fingeret, M. C.; Vidrine, D. J.; Reece, G. P.; Gillenwater, A. M.; Gritz, E. R. (2010)21	• 75 participants • Oral cavity cancer • United States • Primarily Caucasian • Pre-treatment	• Provide novel data about multiple dimensions of body image through existing measures	Design: • Multidimensional analysis Instruments Used: • BIS4 • ASI-R5 • BSS6 • FNAES7 • HNS8 • BSI-189 • Structured clinical interview	Incidence: • 77% of participants identified current and/or future appearance-related concerns. • Less than 5% of patients concerned with their appearance had difficulty coping and experienced distress with daily functioning. • Gender differences were not found for any of the body image measures. Risk factors: • Age was inversely correlated with body image concerns. • Patients with T1 tumors had higher body image concerns compared with those with T2–T4 tumors. • Depression was the strongest and most consistent predictor of body image outcomes across the measures.
Fingeret MC, Yuan Y, Urbauer D, Weston J, Nipomnick S, Weber R. (2012)2	• 280 participants • Oral cavity cancer, cutaneous cancer, and head and neck cancers • United States • Primarily males and Caucasian • Pre- and post-treatment	• Obtain descriptive information about the presence of body image concerns, satisfaction with care received about body image issues, and interest in psychosocial intervention for head and neck cancer patients undergoing surgical treatment	Design: • Cross-sectional study Instruments Used: • BIS4 • FACT-HN10 • Body Image Survey	Incidence: • 75% of participants reported feeling concerned/embarrassed at some point following diagnosis. • 38% of participants currently or previously avoided social activities due to appearance, speech, or eating concerns. • 33% of participants endorsed behavioral difficulties involving reassurance seeking, increasing grooming or checking behaviors, or avoidance of grooming. • Levels of body image dissatisfaction increased after initial surgical operation and remained significantly elevated following surgery compared to preoperative levels. Risk factors: • Younger patients were associated with having significantly higher levels of body image dissatisfaction.
Fingeret MC, Hutcheson KA, Jensen K, Yuan Y, Urbauer D, Lewin JS (2013)20	• 280 participants • Oral cavity cancer, cutaneous cancer, and head and neck cancers • United States • Primarily males and Caucasian	• To evaluate associations among speech, eating, and body image concerns for patients undergoing surgical treatment for head and neck cancer	Design: • Cross-sectional study Instruments Used: • BIS4 • A survey designed for the study • FACT-G21,22	Incidence: • 75% of participants reported feeling concerned/embarrassed at some point following diagnosis. • 23.6% of participants reported body image concerns exclusively to physical appearance with the top concern involving scarring/disfigurement. • Patients within the speech and eating concerns group had higher levels of body image/appearance dissatisfaction than those with appearance-only based concerns. Consequences: • Patients with speech and eating concerns were more likely to avoid social activities and have interest in psychosocial interventions to address appearance difficulties. • Participants with any type of body-related concern (speech, eating, or physical appearance) had worse quality-of-life outcomes related to physical, functional, social, and emotional well-being.
Flexen, J.; Ghazali, N.; Lowe, D.; Rogers, S. N. (2011)1	• 204 participants • Various head and neck cancers • United Kingdom • Primarily males • Post-treatment	• Assess concerns about appearance based on what the patients would like to discuss during their consultation	Design: • Descriptive cross-sectional study Instruments Used: • UW-QOL11 • PCI12	Incidence: • 14% of clinics had patients that considered body image as a serious problem or wanted to discuss it at their consultation. Risk factors: • Younger participants and those with more advanced tumors reported the most concerns with appearance.
Henry, M.; Ho, A.; Lambert, S. D.; Carnevale, F. A.; Greenfield, B.; MacDonald, C.; Mlynarek, A.; Zeitouni, A.; Rosberger, Z.; Hier, M.; Black, M.; Kost, K.; Frenkiel, S. (2014)18	• 14 participants • Various head and neck cancers • United States • Participants identified with disfigurement from the illness/treatment • Post-treatment	• To explore the lived experience of disfigurement during head and neck cancer (HNC) by considering its impact and its physical, psychological, existential/spiritual, and social influences	Design: • Qualitative study Instruments Used: • Interviews	Risk factors: • Support and acceptance of family and friends post-treatment can determine patients’ adaptation to disfigurement. Consequences: • Disfigurement caused feelings of low self-esteem, unattractiveness, embarrassment, and inadequacy. • Men had distress with dysfunction rather than disfigurement. • Participants believed disfigurement attracted attention and reactions in social settings, further increasing their anxiety and self-consciousness.
Huang, S.; Liu, H. E. (2008)25	• 44 participants • Oral cancer • Taiwan • Primarily male participants • Post-treatment	• To identify the body image of oral cancer patients and to compare the changes in the body image of oral cancer patients after receiving a cosmetic rehabilitation program	Design: • Quasi-experimental study Instruments Used: • MBSRQ-AS	Incidence: • Participants had significantly higher satisfaction with their appearance following the rehabilitation program than during the baseline assessment.
Katre, C.; Johnson, I. A.; Humphris, G. M.; Lowe, D.; Rogers, S. N. (2008)23	• 252 participants • Oral and oro-pharyngeal cancer • United Kingdom • Primarily males • Post-treatment	• To describe appearance issues in patients following surgery for oral and oropharyngeal squamous cell carcinoma	Design: • Descriptive cross-sectional study Instruments Used: • DAS241 • UWQOL v414	Incidence: • 35% of participants reported no change in appearance. • 40% reported minor change in appearance. • 19% were bothered by appearance but remained active. • 5% limited their activities due to feeling significantly disfigured. • 40% reported self-consciousness with some aspect of their appearance. Risk factors: • Adjuvant radiotherapy and tumor stage were correlated with appearance concerns. Consequences: • Participants were most concerned about saliva, swallowing, speech, chewing, and appearance.
Liu, H. E. (2008)24	• 97 participants • Various head and neck cancers • Taiwan • Post-treatment	• To assess the changed satisfaction with appearance of the participants between pre-surgery and at study time	Design: • Retrospective cross-sectional study Instruments Used: • BIVAS and BAS subscale of the Chinese version of MBSRQ13,16,17	Incidence: • 16% of participants maintained the same level of satisfaction with their appearance compared with pre-treatment level. • 10.7% of participants reported improved satisfaction with appearance compared with pre-treatment level. • Females reported more dissatisfaction with appearance than males. Risk factors: • Radiotherapy treatment or not, age, duration from last radiotherapy, and number of treatment modalities were significantly associated for satisfaction with appearance.
Millsopp (2005)19	• 278 participants • Oral and oro-pharyngeal cancer • United Kingdom • Pre- and post-treatment	• To identify which patients in the series reported that appearance was an issue	Design: • Retrospective review Instruments Used: • UQWOL11 Other measures: • Age, gender, cancer site, tumor size, tumor stage, radiotherapy, operation, resection or dissection, and American Society of Anesthesiologists (ASA) (physical status prior to surgery)	Incidence: • Appearance scores did not differ between men and women or between those under or over 65 years old. • 114 participants reported a low appearance score, rated appearance as important, or mentioned appearance in their questionnaire. Risk factor: • Tumors over 2 cm, T staging in advance of stage 1, flap surgery, segmental resection, and a neck dissection were most likely seen in the patients with appearance concerns.
Rhoten, B. A.; Deng, J.; Dietrich, M. S.; Murphy, B.; Ridner, S. H. (2014)4	• 43 participants • Various head and neck cancers • United States • Primarily male and Caucasian • Pre- and post-treatment	• To examine the relationship between body image and depressive symptoms in patients who have been treated for head and neck cancer (HNC)	Design: • Cross-sectional study Instruments Used: • BIQLI17 • CES-D18	Incidence: • Participants with baseline depressive symptoms had increases in levels of depression at the end of treatment and 6 weeks post-treatment, with a return to baseline by 12 weeks post-treatment. • Body image scores were statistically significantly higher at 12 weeks post-treatment than at the immediate end of treatment and at 6 weeks post-treatment. Risk factor: • Body image was inversely related to levels of depressive symptoms.
Teo, I.; Fronczyk, K. M.; Guindani, M.; Vannucci, M.; Ulfers, S. S.; Hanasono, M. M.; Fingeret, M. C. (2016)3	• 140 participants • Various head and neck cancers • United States • Primarily male and Caucasians • Pre-treatment	• To evaluate body image issues and concerns among patients as they prepare to undergo reconstructive surgery as part of cancer treatment	Design: • Cross-sectional study Instruments Used: • BIS4 • BIDQ19 • ASWAP20 • ASI-R5 • BICSI21 • FACT-HN10 • Head and Neck Survey	Incidence: • 20% of participants scores varied in their level of appearance distress. • 7% of participants scores varied in their level of functional difficulties. • No significant differences in body image scores between female and male participants. Consequences: • Participants reported appearance distress about physical and sexual attractiveness, satisfaction with appearance, changes in self-esteem, behavioral avoidance, and social functioning. • Participants reported functional difficulties with eating and speech abilities.

¹Derriford Appearance Scale, ²Hospital Anxiety and Depression Scale, ³Fear of Negative Evaluation, ⁴Body Image Scale, ⁵Appearance Schemas Inventory Revised, ⁶Body Satisfaction Scale, ⁷Fear of Negative Appearance Scale, ⁸Head and Neck Survey-Appearance Subscale, ⁹Brief Symptom Inventory, ¹⁰Functional Assessment of Cancer Therapy Scale-Head and Neck Version, ¹¹University of Washington Quality of Life Questionnaire, ¹²Patient Concerns Inventory, ¹³Multidimensional Body-Self Relations Questionnaire Appearance Scale, ¹⁴University of Washington Quality of Life Scale version 4, ¹⁵Body image Visual Analogue Scale, ¹⁶Body Area Satisfaction, ¹⁷Body Image Quality of Life Inventory, ¹⁸Center for Epidemiological Studies Depression Scale, ¹⁹Body Image Disturbance Questionnaire, ²⁰Adapted Satisfaction with Appearance Scale, ²¹Body Image Coping Strategies Inventory, ²²Functional Assessment of Cancer Therapy-General (FACT-G)

Instruments Used

The majority of the studies measured body image using the Body Image Scale (BIS) or the University of Washington Quality of Life Scale (UW-QOL). Several of the studies explored the impact of altered body image on other outcomes. The BIS is a 10-item assessment of body image and appearance dissatisfaction in patients with any cancer site and form of therapy.² It evaluates patients’ self-consciousness of their appearance, the loss of physical attractiveness as a consequence of their disease or treatment, and dissatisfaction with the appearance of their scar.²⁰ The scale has demonstrated high correlations with measures of body image in studies with oral cancer patients, but has only previously been validated with breast cancer patients.² The UW-QOL is a questionnaire specific for head and neck cancer and measures 12 domains based on a scale from 0 (worst) to 100 (best) according to the hierarchy of response.¹ Patients health and overall quality of life within the past 7 days are assessed based on their experience with pain, appearance, emotions, and the ability to perform daily activities.

Patient Perception

Three studies using patient interviews to explore alterations in body image in head and neck cancer patients were included in this review, a qualitative interpretive phenomenological analysis, a mixed-methods cross-sectional survey, and a multidimensional analysis. Interviews were conducted with a total of 109 head and neck cancer patients who had undergone disfiguring surgery or identified themselves as having a visible difference in appearance.^18,21,22 The patients provided a direct perspective of the disfigurement experience and its impact on the physical, psychological, spiritual, and social aspects of their lives. Most of the patients described common issues with self-image related to low self-esteem, self-consciousness, embarrassment, distress from functional impairment, and social isolation. The disfigurement often caused feelings of unattractiveness, inadequacy, and anxiety, which were all intensified in social settings. Patients believed their scars caused them to stand out in public and were further distressed by others staring or making comments about their appearance.^18,21,22 Camouflaging and hiding the disfigurement with clothing, accessories, or medical bandages allowed them to avoid embarrassment and humiliation. Other patients reported a positive impact of the change in appearance, reporting that they gained confidence from their scars and viewed them as a reminder to be grateful for being alive and surviving cancer.

Clinical Variables Associated With Altered Body Image

Eight studies explored clinical variables related to altered body image in a total of 1360 patients with head and neck cancers. Of these, 2 studies focused on the relationship between depression and altered body image, with 1 study including only preoperative patients,²¹ and the other following patients longitudinally from baseline end of treatment to 12 weeks postoperatively in 6-week intervals.⁴ In both studies, depressive symptoms were the strongest predictor of altered body image, and consistently predicted appearance dissatisfaction,^4,21,22 despite each using different measures of depression. The longitudinal study by Rhoten and colleagues demonstrated a time-dependent change in levels of depressive symptoms and body image concerns from the end of treatment to 6 and 12 weeks post-treatment, with less depressive symptoms and body image concerns occurring at the later time points.⁴

Several studies explored the relationship of patient age to body image concerns. In 3 studies, with a total of 736 patients evaluated postsurgically, an inverse association between age and satisfaction with physical appearance was shown, with those diagnosed at younger ages (less than 65 years) having higher body image concerns.^1,2,23 In one of these studies in which a multivariate analysis was undertaken, age remained a significant predictor, along with tumor stage and adjuvant radiation therapy, for body image concerns.²³

Other studies have not found an age–response relationship. However, each of these studies demonstrates significant limitations.^19,21,22 For example, in their study of 20 patients, Clarke and colleagues did not find a significant correlation between age and self-consciousness regarding appearance using the Derriford Appearance Scale (DAS-24). However, this mixed-methods cross-sectional survey included mostly male participants, not accounting for the female population that most commonly reports dissatisfaction with appearance.^22,24 Fingeret and colleagues explored body image concerns in patients with oral cavity cancer, but only included newly diagnosed patients prior to surgery or any other therapy, and most with early stage disease.² This could serve as a limitation because it does not contain an equal and representative sample of head and neck cancer patients, particularly those with advanced tumors. With the BIS, they did not find an association with age, although age was inversely correlated with the Head and Neck Survey-Appearance Subscale results. However, on multivariate analysis, depression remained the primary predictor of body image concerns as noted earlier in this report. Millsopp et al also measured appearance in patients who had not yet undergone treatment for oral and oropharyngeal cancer with the UW-QOL and determined that the appearance scores did not vary for patients by age at baseline.¹⁹

Studies to date that have explored the association between tumor stage and alterations in body image have found mixed results. Two of the studies described above found a correlation between advanced cancer stage and appearance dissatisfaction.^1,23 Both studies indicated that stage III or IV tumors provoked concerns regarding bodily appearance and functioning more than lower stage malignancies. In addition, the study by Millsopp et al reported that tumors greater than 2 cm correspond to worse appearance scores.¹⁹ This finding may be related to patients with advanced tumors (larger size or higher grade) often undergoing more invasive and multimodal treatments, and being more predisposed to visible scarring or disfigurement.¹ However, addressing this question from a different perspective, Fingeret et al’s multidimensional analysis assessed patients at baseline, prior to undergoing any treatment. Inversely to the post-treatment body image assessment, in the pretreatment setting, patients with stage I tumors reported having higher body image concerns on the Body Satisfaction Scale (BSS) than those with stages II–IV.²¹

The extent and type of treatment have been evaluated primarily in relation to the addition of radiotherapy treatment on body image. Two cross-sectional studies have investigated this question in 349 post-treatment patients with various head and neck cancers.^23,24 One study using the DAS-24 and UW-QOL version 4 reported that nearly half of the radiotherapy patients identified having 3 or more problems with appearance. The other utilizing 3 instruments from the Multidimensional Body Self-Relations Questionnaire (MBSRQ) reported that patients who received radiotherapy in addition to surgical treatment were less satisfied with their body image.²⁴ Both reports suggest that the type and number of treatment modalities are indicative of satisfaction with personal appearance post-treatment.

Only one study evaluating the effectiveness of an intervention designed to impact body image was found on this review.²⁵ A total of 44 patients enrolled in a Taiwanese cosmetic rehabilitation program were taught strategies to reduce body image concerns through camouflage techniques. Patients used cosmetic equipment and were assessed on appearance satisfaction using the MSBRQ. At the end of the 12-week program, patients demonstrated higher scores measuring satisfaction with appearance and perceived attractiveness. This study indicated that educating patients on how to camouflage their disfigurement can result in a more positive body self-image.

Consequences to Altered Body Image

The association of altered body image with psychosocial outcomes has been explored in a handful of studies. Two qualitative studies described the significant impact that alteration of body image has on body reintegration and coping ability in a total of 118 patients with head and neck cancer.^4,26 Using a cohort study design, Dropkin measured body reintegration (referred to as coping effectiveness) through 4 different measures: the Ways of Coping Questionnaire, the State Trait Anxiety Inventory, the Disfigurement/Dysfunction Scale, and the Coping Behaviors Scale. The results showed that the anticipation of disfigurative surgery was associated with low levels of body reintegration and high levels of anxiety postoperation. Furthermore, patients that previously received radiation and chemotherapy had difficulty adjusting to treatment-related changes following surgical treatment. More recent findings, such as the cross-sectional study by Rhoten et al, challenge these results. Rhoten suggested that the degree of body image concern progressively decreases post-treatment due to patient acceptance of body changes over time.

In another cross-sectional study, Fingeret et al obtained descriptive information related to the feelings and behavioral difficulties of patients with altered body image. Of 280 head and neck cancer patients, 75% reported feeling concerned or embarrassed by changes in appearance from their disease and its treatment.² Furthermore, over 30% of patients specified having concerns with speaking and scarring/disfigurement at some point following diagnosis, resulting in avoidance of social activities because of their appearance, speech difficulties, or eating habits. Others found that their concerns caused them to seek reassurance about their appearance, spend more time with grooming activities, or avoid grooming altogether because of their concerns. In a follow-up study, the authors identified a subset of patients with speech and eating concerns as more likely to display this behavior than those with appearance-only concerns.²⁰ This group was also more inclined to have interest in psychosocial interventions to address these appearance-related changes.²⁰

Three studies evaluated distress related to functional changes in 392 head and neck cancer patients.^3,18,23 Most patients were concerned with chewing/eating, salivation, speech, swallowing, drooling, droopy smile, numbness, and swelling. These concerns were particularly emphasized by males, whom were also distressed by the potential subsequent effects of functional impairment such as loss of employment, a restriction of hobbies, or reduced social activity.¹⁸ The loss of function also contributed to patients’ “loss of self” and prohibited them from reconnecting with their precancer identity.¹⁸

Discussion

This systematic review included studies evaluating both the clinical variables associated with altered body image and the consequences of altered body image in patients with tumors involving the head and neck, including primary head and neck cancers as well as tumors involving the central nervous system. The review did not yield any literature on CNS cancer; however, we developed an understanding of the potential interactions of body image that have been reported in head and neck cancer patients that may be useful in planning assessment and interventions in CNS tumor patients. The earlier literature review by Rhoten et al, identified the paucity of the literature at that time, lack of longitudinal studies, and the need for instruments specific to the patient population.¹⁶ Since that time, the additional literature identified clinical variables associated with alterations in body image including patient age, depression, tumor grade, and use of multimodal therapy, with impact shown for both functional outcomes and social interactions and included studies exploring the relationship longitudinally.

Analysis of patient demographic characteristics demonstrated that age at diagnosis was the only consistent factor reported to impact body image in head and neck cancer, with younger patients (less than 65 years) having more body image concerns. This age effect is an important consideration in the CNS population, as the median age at diagnosis for all primary brain tumors is 59 years.²⁷ Tumors known to occur at younger ages include pilocytic astrocytomas, oligodendrogliomas, choroid plexus tumors, neuronal and mixed neuronal-glial tumors, tumors of the pineal region, embryonal tumors, and germ cell tumors.²⁷ In addition, the incidence rates of primary malignant and nonmalignant brain tumors in the adolescent and young adult population has been increasing, with an estimated 11110 individuals estimated to be diagnosed in 2017.²⁷ When considering the data in the head and neck cancer population, there may be a significant number of patients at risk for body image disturbance in the CNS population.

Identifying mood disturbance also appears to be an important factor when considering appearance dissatisfaction in the head and neck cancer population, with depressive symptoms being a strong and consistent predictor of detriment. All 3 studies that evaluated depressive symptoms indicated that clinical symptoms consistently predicted appearance dissatisfaction.^4,21,22 Importantly, one study that evaluated these effects longitudinally demonstrated fewer depressive symptoms and indications of altered body image 12-weeks post-treatment versus 6-weeks post-treatment, suggesting a potential time effect to mood and body image alterations in these patients.

This relationship is important in the CNS population, as major depressive disorder has been reported to impact up to 20% of primary brain tumor patients in the first 8 months after diagnosis.^28,29 This clinically significant outcome has been reported to have consequences for both patients and their families. Depressive symptoms in the CNS population have been associated with impairment of physical function,²⁸ reduced quality of life,³⁰ more medical complications,³¹ reduced work productivity,³² and higher mortality.^30,31 Mood alterations will be important to evaluate in studies examining the incidence and impact of body image disturbance, with particular attention paid to longitudinal evaluation, as per the results from the head and neck literature.

Within head and neck malignancies, tumor-specific factors such as grade and stage were related to body image dissatisfaction, with tumors of higher grade and stage provoking the most concern with bodily appearance and functioning. Authors postulate that lower grade tumors are often associated with less aggressive surgical approaches and adjuvant therapies in this patient population. In addition to tumor characteristics, anticipation of altered body image prior to treatment and receiving multimodal treatment were reported to be associated with more body image disturbance. Both radiation and extensive surgery treatments are associated with hair loss concerns and appearance dissatisfaction in the head and neck cancer population.

The impact of tumor grade and treatment modality in primary CNS tumor patients may be more complicated. Neurologic symptoms related to the disease itself are often related to tumor location and not tumor grade. In addition, similar symptoms of cognitive dysfunction³³ and fatigue³⁴ have been found in both high and low-grade gliomas. Some symptoms are known to occur more commonly in certain tumor types or grades; for example, low-grade gliomas have been characterized by a higher incidence of seizure than their high-grade counterparts. In addition, lower grade tumors occur more commonly in younger patients, which is also an identified risk for increased body image disturbance. In the primary brain tumor population, the majority of patients, regardless of tumor grade, will undergo surgical resection, often receive radiation therapy, and may also receive chemotherapy. Those with lower grade tumors may have longer survival post-treatment, with treatment-associated body image alterations potentially having an impact through the survivorship period. Whereas higher grade tumor patients may receive more intensive treatment, which may impact both the occurrence of alterations in body image and its associated effects, these patients also face much poorer prognoses. As a consequence, evaluation of body image in both low-grade and high-grade brain tumor patients should be undertaken to evaluate the relationship in this population.

The clinical importance of studying body image in cancer patients, however, truly lies in the consequences to body image alterations on quality of life. Altered body image has been found to exacerbate difficulty assimilating to treatment-related changes. Functional and sensory changes resulting from the tumor and its treatment interfere with patients’ daily functioning and social activities, contribute to their “loss of self,” and prohibit their reconnection with their precancer identity. Social avoidance was voiced as a coping strategy to avoid humiliation or embarrassment because of scarring, disfigurement, or speech difficulties in head and neck cancer patients. Similarly, the diagnosis of a primary brain tumor has been associated with difficulty returning to work from the time of diagnosis for the majority of those with high-grade gliomas³⁵ and nearly half of those with low-grade tumors.³⁶ Side effects of treatment—such as radiation- and chemotherapy-induced alopecia, craniotomy scars and cranial deformities postsurgery, cushingoid appearance from corticosteroids, and neurologic deficits—occur commonly in CNS patients, suggesting changes to appearance that parallel those seen in the head and neck cancer population. Corticosteroid therapy can also produce dermatological complications, including thinning of the skin, purpura, and red striae, and impaired wound healing.^37,38 The usage of this treatment has been associated with a negative perception of patients’ body image³⁸ and its effects can have a significant impact on CNS patients.³⁹

There are several notable limitations to this review. There are limited studies to date, with most studies exploring a mixed population at single institutions, and often using cross-sectional study design. The most notable limitation is the lack of studies in the primary brain tumor patient population. While similar, head and neck cancer patients may have different antecedents and consequences than brain tumor patients. The impact on patients’ perception of body image and impact on both work and social interactions needs to be interrogated.

Conclusion

Within the head and neck cancer literature, work has been undertaken to evaluate the effects of disease and its treatment in this population. The literature reviewed suggests a relationship between body image, age, depressive symptoms, and tumor grade or stage. As with the head and neck cancer population, primary brain tumor patients may be at risk for altered body image due to similar patterns of tumor sequelae and treatment effects. Due to the absence of data and potentially significant quality of life impact, the occurrence of body image alterations in CNS tumor patients should be evaluated to provide clinical and research methods that can be applied to this patient population.

Supplementary Material

Supplementary material is available at Neuro-Oncology Practice online.

Funding

The research for this manuscript was not supported by any funding.

Conflict of interest statement. None declared.