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Rheumatology Advance Access published online on February 17, 2007
Rheumatology, doi:10.1093/rheumatology/kem008
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© The Author 2007. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Appearance self-esteem in systemic sclerosis—subjective experience of skin deformity and its relationship with physician-assessed skin involvement, disease status and psychological variables

W. G. J. M. van Lankveld1, M. C. Vonk2, H. Teunissen1 and F. H. J. van den Hoogen1,2

1Department of Rheumatology, St Maartenskliniek Nijmegen and 2Department of Rheumatology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.

Correspondence to: W. G. J. M. van Lankveld, Sint Maartenskliniek Department of Rheumatology, PO Box 9011, 6500 GM Nijmegen, The Netherlands. E-mail: w.vanlankveld{at}maartenskliniek.nl


   Abstract
Top
 Abstract
Introduction
 Materials and methods
 Results
 Discussion
 References
 
Objectives. To determine the importance of skin deformity in systemic sclerosis (SSc) relative to other disease stressors and to find psychological correlates of appearance self-esteem (ASE) after controlling for disease status.

Methods. Disease-related stressors, symptoms, physical and psychological functioning, social support, coping styles, cognitions and ASE were assessed in 123 patients with SSc. A rheumatologist determined disease duration, SSc subtype, presence of organ involvement and skin-thickness scores. Stepwise hierarchical regression analysis of disease-related cognitions on ASE was performed after controlling for selected variables.

Results. Skin deformities proved a core stressor of the disease, only preceded by fatigue. Physician-assessed disease status, including modified Rodnan skin score, was unrelated to ASE. Sex, self-reported functioning and symptoms were related to ASE and used as control variables. Both acceptance and anxiety correlated strongly with ASE. The stepwise regression procedure only identified the disease-related cognition acceptance.

Conclusions. In SSc, ASE proved unrelated to the extent of skin thickness. Psychological interventions aimed at boosting ASE should primarily target the psychological factors acceptance and anxiety.

KEY WORDS: Appearance self-esteem, Disease cognitions, Systemic sclerosis, Psychological functioning


   Introduction
Top
 Abstract
 Introduction
Materials and methods
 Results
 Discussion
 References
 
Scleroderma or systemic sclerosis (SSc) is an autoimmune disease characterized by excessive accumulation of connective tissue in skin, muscles, joints and internal organs, most notably lungs, heart, kidneys and gut. The extent and course of the disease are widely variable. A distinction is made between limited cutaneous and diffuse cutaneous SSc, with diffuse SSc being the more severe subtype, distinguished by early, extensive skin thickening and internal organ involvement [1]. The syndrome is highly distressing to the patient [2–4], as it has an impact on many dimensions of his or her life [5, 6], including level of physical functioning [7, 8], sexuality [9], employment opportunities [10] and life expectancy [11].

The fibrotic process often affects the patients’ hands and face, a person's most visible and socially relevant body parts, causing appearance to become one of their great concerns [5, 12, 13], with a vast majority of patients expressing concern about disfigurement [14]. Disfigurements and alterations in body appearance may affect a person's self-esteem, i.e. the overall feeling of self-worth someone develops in various social situations [15]. Self-esteem pertaining to appearance, denoted as appearance self-esteem (ASE), thus reflects the subjective evaluation of one's appearance [16] and is often decreased in people with actual deformities like burn injuries [17]. Women with SSc have been known to report an even lower ASE than burn patients [6], and low ASE in SSC has been related to impaired psychological functioning as expressed in depressive symptoms and psychological distress [6, 12, 18]. These serious consequences warrant an accurate identification of those factors that contribute to or underlie ASE.

Although mean ASE is decreased in SSc relative to that of healthy individuals, within SSc samples the extent of objective disfigurements or skin involvement proved largely unrelated to ASE [6, 12]. Studies in other conditions have shown that social support and coping styles correlate with ASE [17, 19, 20]. As yet, no studies have been conducted to determine the relationship between these latter aspects and ASE in SSc. Furthermore, disease-related cognitions attached to the condition should be considered as well. A condition like SSc and its accompanying skin deformities has a strong inherent negative or aversive connotation. Yet, patients can attach negative, neutral or even positive cognitive connotations to the inherently negative condition [21]. Such re-evaluations, i.e. the use of disease-related cognitions, proved highly correlated to differences in psychological distress in SSc. The negative connotation of helplessness, for instance, was related to higher levels of depression [22], whereas attaching the neutral appraisal of control to the condition was associated with lower levels of depression [23]. These findings suggest that attaching different cognitive connotations to the condition may also be crucial in explaining ASE variance between SSc patients with similar disfigurements. The one study that specifically looked into the relationship between cognitions and ASE found acceptance to be related to higher ASE [24]. It needs to be noted that the study involved healthy students only and the findings have to date not been replicated in SSc, nor has the factor been studied relative to observed skin deformity, social support and coping styles.

To foster interventions aimed at improving ASE in patients with SSc, we first need to identify the variables that underlie or contribute to the development of their perceptions and cognitions. With the current study we wished to determine the importance of the stressor skin deformity relative to other SSc-related stressors. We subsequently analysed the psychological correlates with the patients’ ASE after controlling for relevant demographic and disease-related variables. Based on the earlier finding in healthy subjects, we expected the disease-related cognition acceptance to also be associated with higher ASE in our patient population.


   Materials and methods
Top
 Abstract
 Introduction
 Materials and methods
Results
 Discussion
 References
 
Sample
Participants were 138 patients with SSc as diagnosed in accordance with the 1980 preliminary classification criteria of the American College of Rheumatology [25] who were enroled in a prospective follow-up study conducted by the Departments of Rheumatology of the Sint Maartenskliniek and the Radboud University Nijmegen Medical Centre in Nijmegen, The Netherlands. The study was approved by the local medical ethics committee and written, informed consent was obtained of all patients prior to their participation.

Procedure and measures
Demographic variables and disease status
All patients received a questionnaire by post with the request to complete the list and return it to the hospital. In an accompanying letter the purpose of the study was explained. They were also asked to indicate their sex, age, years of education, marital and work status. A rheumatologist (the second author) had earlier assessed the patients within the context of our prospective follow-up with reference to the following variables: disease duration from the first sign of skin thickening, subtype of SSc (limited cutaneous vs diffuse cutaneous), degree of skin involvement and involvement of internal organs. Degree of skin involvement was assessed using the modified Rodnan Skin Score (mRSS): in 17 places of the body the skin is taken between thumb and index finger and the folding of the skin is rated from 0 (no tethering) to 3 (serious tethering) [26]. Involvement of internal organs and muscles was assessed based on clearly defined criteria [27–33], which are summarized in Table 1. Dichotomous yes/no scores were used to indicate the involvement of the various organs.


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  		TABLE 1. Definition of organ and muscle involvement

 
Disease-related stressors
Patients completed a questionnaire comprising 18 items referring to 18 disease-related stressors that was an adaptation of an inventory of disease stressors used in previous research in patients with rheumatoid arthritis (RA) [34]. To adapt it for SSc, the original 13 items were reviewed by two SSc patients, two rheumatologists and two psychologists. The following five items were added: shortness of breath, skin deformities, gastrointestinal problems, kidney complaints and incontinence. Patients rated each stressor on a 4-point scale from [1] ‘not annoying at all’ to [4] ‘very annoying’.

Appearance self-esteem (ASE)
The patients rated their ASE on the 6-item Appearance subscale of the State Self-Esteem Scale [15] based on a 5-point Likert scale ranging from ‘not at all’ [1] to ‘extremely’ [5]. The range of total possible scores ranges from 6 to 30, with higher scores depicting higher levels of ASE. The subscale had been used in an SSc sample before and appeared to be a reliable and valid instrument for the SSc population [18].

Physical functioning and symptoms
The Scleroderma Health Assessment Questionnaire (SHAQ) was used to measure the patients’ physical functioning and symptoms [35]. The first part of the SHAQ consists of the original Health Assessment Questionnaire Disability Index (HAQ-DI) as developed by Fries in 1982 for use in patients with RA [36]. The HAQ-DI has good reliability and validity in patients with SSc [35, 37, 38]. It comprises 20 items measuring the following eight functions: dressing and grooming, arising, eating, walking, personal hygiene, reach, grip strength and activities. The scores range from 0 (best function) to 3 (worst function). A patient's mean score for the eight HAQ-DI functions was used to indicate overall physical functioning. Symptoms of SSc were assessed using six Visual Analogue Scales (VAS) gauging pain, gastrointestinal tract involvement, lung involvement, Raynaud's phenomenon, digital ulcers and patients’ perceived overall disease severity. For the present study we added a VAS to assess fatigue.

Psychological distress
The ‘Depressive Mood’ and ‘Anxiety’ scales of the Dutch Impact of Rheumatic Diseases on General Health and Lifestyle (IRGL) were used to assess psychological distress [39]. In the Netherlands, the IRGL is a well-accepted instrument to assess physical, psychological and social functioning in patients with rheumatologic conditions. The 6-item Depressive Mood scale measures the patient's mood in the previous week using a 5-point Likert scale ranging from ‘not at all’ to ‘a lot’. The 10-item Anxiety scale measures anxiety in the previous month on a 4-point Likert scale ranging from ‘almost never’ to ‘almost always’.

Social support
Two other IRGL scales assessed Potential Support (5 items) and Actual Support (3 items) both rated on a 4-point Likert scale. An example of an item of the former scale reads ‘When I am in pain, there is someone to support me’ and an example of the latter ‘I discuss problems with others’.

Coping
Patients completed the Utrecht Coping Scale (UCL) [40] to assess the following six coping styles: active coping, comforting cognitions, seeking social support, avoidance, expression of emotions and palliative reaction. We left out one subscale of the UCL because of its conceptual overlap with depression and depressive mood.

Cognitive evaluations (cognitions)
The 18-item Illness Cognitions Questionnaire (ICQ) [21] measures three generic illness cognitions, i.e. cognitive connotations attached to the condition: helplessness, acceptance and disease benefits. The three constructs reflect the values associated with the cognitive evaluation. Helplessness emphasizes the negative values of the stressor, acceptance diminishes the adverse meaning and disease benefits confers a positive meaning to the stressor. Examples of the latter are positive personality changes, changes in life priorities and stronger personal relationships. The items are rated on a 4-point Likert scale and the ICQ has excellent construct and internal validity [21].

Statistical analysis
The sample's ASE-score dispersion was tested with the Kolmogorov–Smirnov test for normality. Between-group differences were tested by means of t-tests for independent samples, or an ANOVA. Associations between numerical variables are expressed in Pearson correlations. For groups of variables, multiple correlations (R2s) with ASE were computed to determine the degrees of variance explained. Because we used pairwise exclusion of missing values in our calculations, the degrees of freedom could vary slightly. Demographics, disease status, physical function and symptom variables with significant Pearson correlations with ASE were selected for further analysis. These variables were used first as controls in a stepwise regression analysis with ASE as the dependent variable. Psychological variables with significant Pearson correlations with ASE were entered next, again following a stepwise procedure. For each R2 the F-change statistics and its degrees of freedom are given. For the variables entered into step 2 of the regression analysis standardized beta coefficients were computed to provide an indication of the relative importance of the variables in this second step. For all statistical analyses the Statistical Package Social Sciences, version 9.1 was applied and significance levels were set at P < 0.05.


   Results
Top
 Abstract
 Introduction
 Materials and methods
 Results
Discussion
 References
 
Of the 138 patients that were approached, 123 patients returned a completed questionnaire (89%). Table 2 lists the patients’ demographics and disease characteristics.


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  		TABLE 2. Patient characteristics (n = 123)

 
The majority of patients were married, middle-aged women and half of the patients (51%) were employed, studying or active in the home. The majority of patients (71%) had limited cutaneous SSc. Oesophageal involvement was observed in 90% of the patients and lungs were affected in 41% of the patients. Other organ involvement was far less common (heart 9%, kidneys 5%, intestines 4% and muscles 4%). No organ involvement was reported for five patients (4.2%) only.

Distribution on the ASE was normal, with a mean score of 19.1 (S.D. = 3.9), which was similar to the mean score reported for another SSc sample [18]. Internal consistency of the scale in this sample was good (Cronbach's {alpha} = 0.71). Next, the relationship between demographics and disease status on the one hand and ASE on the other was analysed. Gender was the only demographic variable that proved related to ASE. The male patients reported higher levels of ASE than the female patients [mean scores 20.3 and 18.5, respectively; T (119) = 2.35, P < 0.05]. The physician-assessed disease-status variables were all unrelated with ASE. Comparing mean scores on ASE for both SSc subtypes did not show significant differences (average scores for limited and diffuse SSc, respectively, 19.1 and 19.0), while mRss and number of organs involved did not show significant correlations with ASE.

The means and standard deviations (S.D.) for the self-reported disease status measures are depicted in Table 3. Univariate Pearson correlations were computed between physical functioning and disease-symptom variables on the one hand and ASE.


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  		TABLE 3. Sample descriptives of physical functioning and disease symptoms and their univariate association with ASE

 
Mean HAQ-DI for all eight scales was 0.98 (S.D. = 0.70). All eight HAQ-DI scales showed significant negative correlations with ASE, demonstrating that higher levels of limitations were related to lower levels of ASE. The correlation between mean HAQ-DI and ASE was –0.44 (P < 0.01). A multivariate regression analysis showed that the eight HAQ-DI scales together explained 28% of the variance in ASE (R2 = 0.28; F = 5.28; df = 8, 109; P < 0.001).

As regards disease symptoms, fatigue was the symptom with the highest mean VAS scores. Individual symptom VAS scores for pain, Raynaud's phenomenon and fatigue all had significant negative correlations with ASE. The VAS for disease severity showed similar negative correlations with more and severer symptoms and perceived disease severity being related to lower ASE. Together, the seven symptom scales explained 18% of the variance in ASE (R2 = 0.18; F = 3.37; df = 7, 110; P < 0.01).

To determine the relative weight of skin deformities in comparison with other disease-related stressors, we obtained a rank ordering for the main stressors of SSc in our sample. Table 4 shows the distribution of the scores on the stressors with a mean score equal to or exceeding 2 (i.e. a mean rating of at least ‘a little annoying’). Items are ranked based on their mean score from most annoying to least annoying. Frequencies and percentages for each of the four categories for each item are given.


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  		TABLE 4. Distribution of scores on the disease-related stressors (n = 123)

 
Fatigue proved the most annoying SSc stressor, closely followed by limitations and skin deformities. Patients thus rated skin deformities as more annoying than pain. Only 12 of the 123 patients reported to find skin deformity not in the least annoying. The patients with different scores on the single item assessing annoyance with skin deformity differed in mean ASE scores. The mean scores for the group of patients rating skin deformity as not annoying at all = 22.2; a little annoying = 19.9; rather annoying = 19.2; very annoying = 17.5 (ANOVA for difference between groups F = 5.8; df = 3, P < 0.001). As might be expected, higher levels of annoyance with skin deformity assessed using 1 item is strongly related with lower ASE assessed using the six item scale.

The stressors depressed mood, feeling judged by others, problems with bowels, side effects of the medication, social isolation, changes in financial situation, incontinence and kidney problems all had mean scores below 2 (i.e. rated as ‘not annoying’).

As to the relationship between psychological variables and ASE, again, Pearson correlations were computed between individual indices of psychological functioning, social support, cognitions and coping on the one hand and ASE on the other. Table 5 shows the mean scores for each individual variable and Pearson correlations with ASE, as well as multiple correlations for groups of variables with ASE.


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  		TABLE 5. Univariate correlations of psychological variables with ASE, and multivariate relations between psychological functioning, social support, cognitions and coping styles and ASE

 
Psychological functioning and cognitions showed strong multivariate associations with ASE, explaining 19% and 20% of ASE the variance, respectively. Social support and coping explained 8% and 13% of the variance, respectively. Together, the psychological variables explained 31% of ASE variance (R2 change = 0.31, F-change = 3.2, df = 14, 101, P < 0.01). The univariate indicators of psychological functioning have significant inverse correlations with ASE. Although depression and anxiety were highly intercorrelated (r = 0.76), anxiety proved more strongly correlated with ASE than depressed mood. Two of the three disease cognitions had significant univariate associations with ASE, with higher helplessness scores being related to lower ASE and higher levels of acceptance with higher levels of ASE. Disease benefits were unrelated to ASE. The correlations for individual social support and coping indices were weaker. Only higher levels of potential support and an active coping style were significantly associated with higher levels of ASE.

A multiple regression analysis entering those psychological variables showing significant Pearson correlations with ASE revealed that, together, the six variables explained 28% of the variance in ASE (F-change = 7.03, df = 6, 110, P < 0.001). In a stepwise procedure acceptance was selected first and anxiety second. Together, the two variables explained 23% of the variance with almost equal but reversed standardized coefficients beta (0.27 and –0.25, respectively). The same procedure was repeated while controlling for sex, HAQ-DI and the VAS scores for pain, Raynaud's phenomenon, disease severity and fatigue. When these variables were forced into the equation at step 1 of the regression analysis they explained 28% of the ASE variance (F-change = 6.87, df = 6, 106, P < 0.001). Acceptance and anxiety were entered in a stepwise procedure at step 2. Only acceptance explained an additional 7% of the variance in ASE (F-change = 12.06, df = 1, 105, P < 0.001).


   Discussion
Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
References
 
Most of our patients with SSc perceived skin deformity as annoying, making skin deformity the second main stressor of the disease, only preceded by fatigue. The patients’ ASE was decreased to the same level as reported in another SSc study [18]. Also consistent with previous research, our female patients reported significantly lower levels of ASE than their male counterparts [12, 18]. In our sample, ASE proved unrelated to disease-status variables, including the extent of skin involvement as assessed by the rheumatologist. Although previous studies had reported weak associations between self-assessed skin thickening and ASE [6, 12], in both studies ASE was largely unrelated to objectively assessed skin thickening.

Self-reported functioning was related to ASE, confirming previous findings [12]. Possibly, an impaired physical functioning in terms of difficulties in performing daily activities, for instance, may intensify the patient's focus on the disease and its negative consequences, in particular appearance. The same might be true for the observed correlations between ASE and the self-assessed symptoms of pain, Raynaud's phenomenon, perceived disease severity and fatigue. As fatigue was judged the most annoying symptom showing the strongest correlation with ASE, a separate VAS scale measuring this symptom proved an important addition to the other six SHAQ scales.

Individual social support and coping indices showed weak but significant correlations with ASE. Comparable to previous research in burn patients [19], social support was marginally related to higher levels of reported ASE explaining ~8% of the variance. When other psychological variables were considered simultaneously social support no longer remained associated with ASE. The relationship between active coping and ASE was even weaker and most coping styles being unrelated to ASE. Our findings thus seem to support the notion that, as patients cannot control skin involvement by their coping behaviour, ASE is more dependent on their ability to cognitively re-evaluate their situation.

Both the disease-related cognitions’ helplessness and acceptance showed strong correlations with ASE. In the final analysis acceptance was the psychological variable most strongly associated with ASE, showing a higher beta coefficient than any other of the psychological variables. Earlier studies among students had already demonstrated the importance of acceptance in ASE [24]. In SSc, a patient's ASE is thus primarily related to his or her ability to attach connotations to a stressful event that diminish its aversive meaning [21]. Although highly correlated with ASE, after controlling for acceptance, anxiety did not add to the proportion of explained variance in ASE. In our sample the ASE associations of anxiety and acceptance were similarly strong and highly intercorrelated (r = –0.69), suggesting that patients reporting high levels of anxiety are unlikely to attach positive connotations to their disease. Interventions aimed at improving ASE in SSc should hence focus on the patients’ acceptance as well as their anxiety.

Of course, the ASE scale we used in this study has not been widely applied to assess ASE in SSc or in other chronic diseases. Although it did show good internal consistency in our sample, equalling that reported by Malcarne et al. [18], additional studies are needed to confirm the scale's validity and reliability in chronic diseases. Another limitation of this study is that no data are available on the 15 subjects that were approached for the study but failed to return the questionnaire. Therefore, a non-response effect in this sample cannot be ruled out.

Moreover, the correlational nature of our study prevents causal conclusions. It cannot be ruled out that the causal roles of social support and coping styles in the process of the patients’ cognitive evaluations of their situation and in shaping ASE are more pronounced than has become apparent from our approach. Longitudinal studies should determine whether patients who do not feel supported by their social network or whose coping efforts are ineffective are more anxious and experience more difficulties in coming to terms with their skin deformities.

Despite the study's limitations, our findings have several implications for the evaluation and treatment of SSc. Firstly, objectively assessed skin involvement cannot be seen as an indication of decreased ASE. Rather, ASE should be assessed in each SSc patient independently and only those patients whose ASE is substantially diminished should be eligible for treatment aimed at raising ASE. Secondly, as strong correlates of ASE, anxiety and acceptance are likely psychological focal points in treatment. Cognitive–behavioural techniques should be considered that train patients to replace the negative connotations of their condition with more neutralizing connotations to help them reduce their anxiety and boost their ASE. Again, it will require longitudinal research and randomly controlled trials to determine whether changing disease-related cognitions like acceptance will have a causal effect on ASE in this population.

Formula

The authors have declared no conflicts of interest.


   References
Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 References
 

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Submitted 25 September 2006; revised version accepted 3 January 2007.
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