SSc is a chronic autoimmune disease resulting in fibrosis of the dermis, which induces visible and palpable modification of the skin. We assessed perception of these physical changes using the AES, which was the primary endpoint of the study. Using this scale, we showed that SSc patients presented a greater perception of aesthetic impairment than controls. Results at the AES were correlated with results at the ASWAP, a specific questionnaire not yet used in literature for the evaluation of aesthetic impairment in SSc. The AES results were correlated with symptoms of anxiety and depression. Patients presented poorer quality of life than controls. AES then appeared as an ease tool to evaluate body image for patients with SSc and not only perception of aesthetic impairment.
Body image is not limited to a mental body image and must also take into account cognitive, and behavioral dimensions (38). This is how Thompson (39) defined methodological strategies in body-image studies, insisting on the choice of general versus specific questionnaires as well as on the components that should be evaluated. This is how we chose the following three questionnaires: the DAS59 for its mixed assessment, both global and focused on a physical complex; the ASWAP for its specificity with SSc, and the MBSRQ for assessing an individual’s investment in their appearance.
The AES is a rapid and ease assessment tool for measuring aesthetic impairment associated with SSc.
The results of ASWAP questionnaire, the only aesthetic evaluation questionnaire specific to SSc, were correlated with those of the AES. Even though this questionnaire has already been validated in the literature (24), it has, as far as we are aware, never been used. The AES was correlated with the overall “Full scale” score of the DAS59, one of the benchmark tests for evaluating aesthetic impairment. Evaluation of the discomfort felt by patients revealed essentially discomfort of the face and hands, with a description compatible with dermatological lesions of SSc (“red spots on face, swollen hands, wrinkles around the lips”). However, DAS59 questions on the Assessment of Investment in Facial Aesthetics (FSC) were not significantly correlated with the AES. This could be explained by the fact that questions in this category relate to elements not adapted to the patient’s experience in the case of SSc (29), with questions on propositions such as: “you are unable to change your hair style or you avoid having wet hair”.
The AES correlates with visible signs of SSc.
The presence of radiated folds was correlated with the results of the AES. This suggests that visible damage could be the most disturbing for patients, tying in with the body image concept as defined in the literature with others’ approval concerns predicting body concerns (40). Although not quantifiable, physical complexes reported in the DAS59 were also visible signs, namely damage to face and hands. The AES was used in a study to evaluate the aesthetic impact of digital ulcers; patients with digital ulcers had higher scores than patients without (41). We did not find a correlation between clinical signs of the disease (calcinosis, telangiectasias, MRSS score) and the AES. Yet, the prevalence of these complications was quite low and our study may have lacked the power to find a significant correlation. Likewise, disease activity scores or internal organ involvement did not correlate with AES, suggesting that visceral involvement does not deeply impact body image.
Correlations with psychological parameters makes the AES an ease tool to evaluate body image.
In 2014, Nguyen et al. (23) evaluated the aesthetic impact in patients with SSc using the same scale, but without a control group. The median score in their study was 5 (3–7), a value close to that of our study, namely 3.9 (1.55-6). Their study focused on the evaluation of anxiety/depressive symptoms in patients with SSc; aesthetic evaluation was therefore secondary but still allowed them to reveal a previously unknown aspect of management of the disease. Perception of aesthetic alteration appears not only to be linked to visible aspects of the disease but is also underpinned by notions including a psychological aspect relating to the image of self-returned to society. Thus, it was important to assess anxiety/depressive symptoms and self-esteem. Prevalence of depressive symptoms, as assessed by the HADS score, was significantly higher in cases than in controls, with values comparable to those in the literature (42). We did not find differences in anxiety symptoms between the two groups. The prevalence of anxiety symptoms found in controls in our study was higher than that reported in the general population (43), possibly explained by hospital recruitment (44). Psychological impairment during SSc therefore does not seem marginal in self-image assessment. Thombs et al. (18) showed in a severe burns population that self-image contributed to depressive symptoms years after the trauma caused by the accident and despite surgical management. As SSc is a chronic disease, the influence of depression on body image and its reciprocity is more complex to define, due to the slow progression of the disease. A follow-up over time of anxiety and depression in patients with SSc could provide some answers.
The image of oneself, when it is related to physical identity, is therefore assimilated to the image that our body sends back to us and to the interpretation that we make of it. Psychologically, it is related to self-esteem, which depends on the degree of cohesion between aspirations and reality at a given time. In our study, SSc cases had lower self-esteem than controls. It has already been shown that there is a strong link between self-esteem, acceptance of the disease and coping in people with SSc (45)(46). Van Lankveld et al. (45) also found that “active” coping-type, that is to say, problem-oriented coping methods, was ssociated with improved self-esteem in patients with SSc (46). It would be interesting to evaluate strategies developed by patients in our study to adapt to aesthetic changes induced by the disease. Van Lankveld et al. (45) also looked at cognitive capacities of patients with SSc, and in particular the processes by which an individual acquires awareness of a disease; they found that a better acceptance of the disease was related to better self-esteem. This finding could explain the lack of correlation in our study between the scores on the Rosenberg self-Esteem questionnaire and the results on the AES. We therefore see the importance of interlocking cognitive processes and strategies developed by an individual faced with changes in their appearance.
As these processes are also influenced by the patient’s environment, patients had higher scores than healthy subjects on the HAQ questionnaire. This reflects the physical limitations induced by the disease, as shown in the study of Poole et al. (47). In our study, the physical limitations of SSc cases, as measured by the HAQ questionnaire, were statistically significant compared to controls. These limitations, impacting quality of life, introduce the notion of “disabling disease”, which can give rise to a situation of disability (48). However, aesthetic impairment in connection with a chronic pathology such as SSc is not yet recognized as an aesthetic disability, although it meets the definition.
Our study has limitations. It was a single-center study, based on voluntary participation, thus introducing a potential bias in self-selection of cases or controls. This risk was partly controlled by exclusion of participants with acquired or congenital aesthetic defects or a history of serious psychiatric disorders leading to hospitalization. In addition, hospital recruitment of patients and controls created a possible admission bias. This can lead to an overestimation of parameters, in particular anxiety/depressive symptoms. The number of subjects included (176 in total) is a sufficiently representative sample of the two populations. The systematic comparison with the control group is the main strength of this study, allowing us to analyze correlations between the parameters evaluated. Older age and higher proportion of males among controls may introduce a bias in body image evaluation which was partially remove with statistical adjustment. In our study, we evaluated all parameters at a given time, which did not allow us to analyze the questionnaires’ sensitivity to change. Prospective longitudinal studies are needed to assess causal links between aesthetic impact during SSc and psychological aspects, especially since body image is generally not very resistant to change (49). The choice of questionnaires can also be discussed. Indeed, the HADS questionnaire and the Rosenberg Self-Esteem Questionnaire are aimed at screening for psychological disorders. They cannot replace structured interviews by a specialist in the analysis of the disorder. However, our data on anxiety and depressive symptoms in patients with SSc remain superimposable on the prevalence reported in the literature. Our results could usefully be enriched by additional tests such as patient’s coping strategies and personality traits (45).