Introduction
Head and neck cancer (HNC) patients have to deal with a wide range of symptoms related to HNC cancer and its treatment [
1]. Vital functions can be affected, such as breathing, speaking, and swallowing. These functional impairments may negatively influence a patient’s body image [
2]. Also, appearance changes in the visible head and neck area may influence body image [
3]. Surgical treatment may cause scarring, an amputated facial area, an affected facial contour and expression, or result in a tracheostomy [
4‐
6]. Radiotherapy may induce swelling, fibrosis, and alterations in skin pigmentation [
5].
Body image is defined by thoughts, feelings, and perceptions about the body and its functions [
7]. A previous review identified nine studies that reported the prevalence of body image distress among HNC patients [
5], with prevalence rates ranging from 25 to 77%. The lowest prevalence was found among patients after treatment of oral or oropharyngeal cancer [
8] and the highest among newly diagnosed oral cancer patients [
9]. Studies mainly focused on a specific HNC subsite (oral/oropharyngeal cancer) or a specific treatment modality (surgery). Information is scarce on body image distress in patients with other HNC sites, and patients treated with (combinations of) surgery, radiotherapy, and chemotherapy.
Furthermore, more data are needed to understand which factors are associated with body image distress and how it affects daily life in HNC patients. Body image distress is found to be associated with decreased health-related quality of life (HRQOL) and symptoms of depression in HNC patients [
10‐
12]. In addition, it may affect their identity and social relationships [
6]. Body image distress may also be related to sexual problems, for example, because HNC patients no longer feel sexually attractive [
4].
Previous qualitative research has described how patients with amputations in the face (e.g., nose or eye) experience and adjust to a changed appearance after HNC. In daily life, patients are constantly reminded of their disfigurement, evoked by painful or itching sensations or by unwanted attention from others [
13]. Patients seem to gradually learn to cope with these situations [
13,
14]. However, insight into experiences from HNC patients with other (more common) bodily changes than an amputation is warranted.
The first aim of the present study is to investigate the prevalence of body image distress in HNC patients, and whether sociodemographic and clinical factors, HRQOL, HNC symptoms, sexuality, self-compassion, and psychological distress are associated with body image distress. The second aim is to qualitatively analyze experiences of HNC patients that caused negative feelings about themselves and their body, and to explore thoughts and feelings that accompany these experiences. Results of the present study will provide more insight in what body image distress means to HNC patients, and this will facilitate supportive care targeting HNC patients with body image distress.
Discussion
In the present study, the prevalence of body image distress among HNC patients was 13–20%. Body image distress was significantly associated with symptoms of depression, younger age, problems with social contact, problems with wound healing, and larger extent of surgery. Patients who participated in a writing intervention reported that negative body image experiences are related not only to changes in appearance but also in functioning, including psychological, daily, social, physical, occupational functioning, and functioning in an intimate relationship.
The prevalence rate in the present study was lower compared with previous studies in the head and neck cancer context, which range from 25 to 77% [
5]. A wide variety of instruments (e.g., Derriford Appearance Scale, Body Image Survey, BIS) used to assess body image could explain this discrepancy. The highest prevalence in previous studies of 77% was found among newly diagnosed oral cancer patients who reported future appearance concerns in a clinical interview [
9]. This may be more related to fear or expectations than existing body image problems. If only BIS outcomes are compared, comparable levels of body image distress were found [
36,
37]. In a study among HNC patients, for instance, < 15% had a BIS score higher than 9 [
36], and in a study among female HNC patients, the mean overall BIS score was 4.50 [
37].
Results of the present study show that patient characteristics, social factors as well as psychological factors are associated with body image distress. This is consistent with a conceptual framework on causal factors, moderators, and sequelae of body image in HNC patients [
5]. In addition, the explained variance of the model in the present study is higher than in a previous study where disease stage, gender, and depression explained 32% of the variance [
9]. An explanation may be that our study included quality of life and clinical variables, suggesting that difficulties with wound healing, problems with social contact, and extent of surgery are key factors associated with body image distress.
Extent of the surgical procedure was related to body image distress in the present study, in contrast with a study from Chen et al. [
38] who found that the surgical procedure did not influence body image. These conflicting results could be explained by the different study sample used. Inclusion of patients treated with CO
2 laser (less extensive surgery) in the present study might explain lower body image distress compared with patients who had a commando procedure (a major operation involving removal of facial structures) or total laryngectomy. In the study sample of Chen et al. [
38], the majority of patients received very extensive surgery: total/partial laryngectomy or oral excision with facial reconstruction.
The association between body image distress and depression in HNC patients was also found in studies among newly diagnosed HNC patients [
9] and HNC patients from diagnosis until 12 weeks post-treatment [
12]. Our study provides evidence that the association between body image distress and depression is also present for a longer time after treatment. Feelings of loss associated with a changed appearance may explain this association [
12].
There was also a significant association between problems with social contact and body image distress. This outcome was further confirmed by the results of our qualitative analysis which showed that eating in public, talking in public, and reactions from others were frequently mentioned events that triggered body image distress. A previous qualitative study among HNC patients also describes social concerns and avoiding people because of body image distress [
39]. Over time, HNC patients are at risk to become socially isolated if no active coping strategies are undertaken [
40]. HNC patients who have speech and eating problems report highest levels of social avoidance [
2].
In the univariate regression analysis, a statistically significant inverse association between body image distress and self-compassion was found in HNC patients. This is in line with previous research among breast cancer patients, which has shown that self-compassion is inversely related to body image distress [
41]. Self-compassion may protect against a negative judgment of one’s post-cancer body, e.g., by being kind to oneself.
The qualitative analysis in the present study revealed that identity was an important aspect of body image. HNC patients wrote about how bodily dysfunction, and not appearance changes, had a negative impact on their identity. For example, loss of one’s own typical laughter may compromise one’s identity. This may have to do with losing “uniqueness and differentiation from relevant others” [
42]. The other mentioned identity threat was being rejected as a blood donor. Belonging to a social group is important for identity [
42]. The finding that identity in HNC can also be threatened by functional bodily changes extends other research that describes identity threat in HNC patients from an appearance perspective [
14].
The present study revealed no relationship between body image and sexuality. This is somewhat surprising since a clear link between body image and poor sexual outcomes was found in other cancer populations [
35]. Previous studies among HNC patients have reported conflicting results [
43,
44]. A possible explanation for the lack of findings may be the use of only two (dichotomized) sexuality outcomes in the present study, for such a complex topic. This was necessary to be able to execute cross-gender analyses. Also, it could be that body image distress is more related to intimacy. This suggestion is supported by previous qualitative research [
45]. HNC patients described how their changed body made them no longer feel sexually attractive and desired by their partner, which reduced the quality of the emotional connection. More research is warranted to unravel the relationship—if any—between body image and sexuality in HNC patients. For those studies, it is suggested to examine sexuality elaborately by using sexuality subscales and to incorporate instruments that measure intimacy.
The present study has some strengths and limitations. A strength is that we included a large sample of HNC patients, with a broad range of tumor sites and treatment modalities. However, due to the moderate response rate (45%), the results of the present study should be interpreted cautiously. Another limitation is that we used the dichotomized BIS as an outcome variable since no validated cut-off score is available. We dealt with this by using the most frequently used cut-off points (i.e., 8 and 10).
For clinical practice, it is recommended to identify HNC patients who suffer from body image distress, which can be monitored by letting patients complete PROMs when visiting the clinic. In that way, problems can be detected in a timely manner and supportive care provided as needed. Because evidence on effective supportive care targeting body image distress in HNC patients is still scarce [
35], more research is needed.
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