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Keywords:

  • Systemic sclerosis;
  • Psychological;
  • Illness beliefs

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. REFERENCES

Objective

To examine patients' beliefs about systemic sclerosis (SSc) and to investigate the relationship between these beliefs, symptom report, and clinical and demographic variables.

Methods

A total of 49 patients (7 male, 42 female) with SSc underwent clinical examination and completed the Revised Illness Perception Questionnaire. This measure assesses beliefs about symptoms, chronicity or recurrence of the condition, consequences, personal and treatment control, illness coherence, perceived causes of the condition, and patients' emotional response to their condition.

Results

The symptoms patients most frequently associated with their SSc were stiff joints (79%), pain (75%), and fatigue (75%). The most commonly reported causes of SSc were stress (53%), altered immunity (49%), and chance or bad luck (46%). More than 96% of patients believed that their condition would be chronic and 78% believed that the condition had serious consequences on their lives. Patients with diffuse cutaneous SSc reported more significant consequences of the condition and less personal control of their SSc compared with patients with limited cutaneous disease. There were no significant differences in illness beliefs between patients with nonsevere and severe ischemia. Multiple regression analyses indicated that illness beliefs, in particular perceived consequences associated with the condition, accounted for a significant proportion of the variance in emotional response to the condition.

Conclusions

The beliefs held and symptoms experienced by patients with SSc are not ruled by disease subtype, skin score, functional ability, or severity of digital ischemia. This suggests patients' beliefs and emotional response are associated with the meaning they ascribe to their condition rather than its severity.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. REFERENCES

Systemic sclerosis (SSc; scleroderma) is a chronic, disfiguring, painful, and currently incurable multisystem connective tissue disease that is associated with significant morbidity and mortality. There are 2 main subtypes. Diffuse cutaneous disease is associated with a high risk of life-threatening internal organ involvement early in the disease course. In contrast, the onset of limited cutaneous disease is often insidious; the diagnosis being made several years after the development of Raynaud's phenomenon. Internal organ involvement, with the exception of gastrointestinal involvement, is less common in patients with the limited cutaneous subtype. In recent years, there has been an increasing trend to examine psychological factors associated with SSc. A number of studies have reported associations with anxiety and depression (1, 2), somatization, obsessive-compulsiveness, and interpersonal sensitivity as compared with healthy controls (3). In line with these studies, there is increasing understanding that the relationship between clinical severity or disease factors within the condition and psychological impact is not linear (2). The lack of such a linear or direct relationship may suggest that illness-related variables and demographics cannot be relied upon to fully explain psychological adjustment to illness (4, 5).

Chronic conditions often present the individual with a profound array of disruptions and difficulties that may show considerable variation in type and severity as perceived by the patient. There is a rapidly increasing pool of data in the literature suggesting that to make sense of and respond to the difficulties illness may present, patients construct their own common sense cognitive model of their condition (6, 7). These illness representations are based on information patients may have received from doctors; general memorized information about health and illness; and lay information from family, friends, and the wider media. Illness representations are said to influence psychological outcomes such as distress (8), coping (9), and functional disability (10). Patient-held beliefs about disease have been shown to be of fundamental importance in adjustment to a wide range of chronic and major medical conditions, including rheumatoid arthritis (11), heart disease (12), and chronic obstructive pulmonary disease (13), in addition to conditions that have a disfiguring aspect, such as psoriasis (8). Thus, investigation of patients' views of their illness may have implications for heightening our understanding of how individuals with SSc comprehend and respond to their condition. No published studies to date have examined illness perceptions in patients with SSc.

The beliefs patients hold about their condition are predicated upon a complex set of illness perceptions that constitute the patient's implicit model of their particular condition. This implicit model is made up of perceptions about potential causes of the condition; perceived consequences of the illness; beliefs about cure or control, which includes personal control and the belief in treatment or recommended advice; timeline or expected duration of the condition; illness coherence or the understanding the individual has of their condition; and illness identity, which concerns the symptoms patients experience as part of their condition. Emotional representations, that is the emotional responses generated by the illness, are also considered to be a vital component of an individual's illness representations (14).

Given the increasing evidence documenting the importance of illness representations in adaptation to chronic conditions, we set out to examine patients' beliefs about their SSc and investigate the relationship between these beliefs and symptom report, clinical parameters of SSc, and other demographic variables.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. REFERENCES

Patients.

A total of 49 consecutive patients with a rheumatologist-confirmed diagnosis of SSc were recruited at specialist clinics and inpatient wards at Hope Hospital, Salford, Manchester, UK. All patients were aged between 18 and 80 years. All but 3 patients fulfilled the American College of Rheumatology (formerly American Rheumatism Association) criteria for SSc (15). Of the 3 who did not, all had Raynaud's phenomenon and 2 had sclerodactyly, abnormal nailfold microscopy, and esophageal dysmotility. The third patient had sclerodactyly and a polymyositis overlap syndrome. Eligible patients provided informed written consent. The study was approved by the Salford and Trafford local research ethics committee.

Clinical assessment.

Patients were classified by a consultant rheumatologist on a number of clinical parameters. These included disease subtype (limited or diffuse cutaneous SSc) (16); severe or nonsevere ischemia (this was assessed on the basis of having a history of being admitted for intravenous vasodilators, digital debridement, or amputation); and skin scores (17) as recorded from the last annual clinical assessment (no longer than 6 months prior to participating in current study).

Procedure.

Patients were asked to complete 2 self report measures and return them to the nurse at the clinic.

Functional ability.

The Modified Health Assessment Questionnaire (M-HAQ) disability index (DI) is a self report questionnaire used to assess functional ability (18). A series of questions assess dressing and grooming, arising, eating, walking, hygiene, reach, grip, and activity. Eight component disability scores are determined, and a composite DI is calculated. In addition to an overall DI (range 0–3), additional categories are ticked for areas where a person may need help, and a 100-mm visual analog scale is also included to determine “how much pain have you had because of your illness in the past week?” where 0 represented no pain activity and 100 represented the most severe pain. The HAQ has been validated and used in patients with rheumatoid arthritis (RA) and other conditions and is well accepted by rheumatologists. Merkel (19) outlined the usefulness and validity of the HAQ in scleroderma.

Illness Perceptions Questionnaire-Revised (IPQ-R).

The Illness Perception Questionnaire (IPQ) was developed by Weinman and colleagues to provide a theoretically derived measurement instrument suitable for use with any patient population (20). It was devised as a method for assessing cognitive representations or beliefs about any illness and has been demonstrated to have good internal reliability and validity. The measure has been employed in numerous patient populations including those with RA (11), heart disease (12), psoriasis (8), asthma (13), and Addison's disease (9). The original questionnaire was recently revised, and the IPQ-R (14) was developed to improve on the psychometric properties of some of the existing scales within the IPQ and to introduce important components of a patient's implicit model of illness previously neglected. The IPQ-R has been employed in a number of patient populations including those with RA, renal disease, chronic and acute pain, type II diabetes, and multiple sclerosis (14). Good internal reliability and discriminant, known group and predictive validity have been demonstrated.

The IPQ-R includes 7 subscales (38 items) that include views about how long scleroderma will last (timeline acute/chronic), the cyclic nature of the condition (timeline cyclic), its consequences, items concerning personal control and treatment control, illness coherence, and emotional representations of illness. An adjusted mean score (sum of the scale items divided by the number of items) is calculated for each subscale, with a possible maximum of 5 for each subscale. Fourteen items are subsumed under the subscale of illness identity, that is, the symptoms the patient views as being part of their illness.

Eighteen potential causes of the illness are identified and these are scored on a 5-point scale from 1 (strongly disagree) to 5 (strongly agree).

Statistical analysis.

Statistical analysis was undertaken using SPSS software (SPSS Inc., Chicago, IL). The data were normally distributed, thus parametric statistics were employed. Pearson's correlation coefficient was used to examine relationships between variables, and differences between means were processed by use of independent t-test. Multiple regression was employed to examine the relative influence of cognitive beliefs and disease factors on emotional response to the condition.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. REFERENCES

Characteristics of sample.

A total of 49 patients with scleroderma (14% male and 86% female) completed the IPQ-R. The demographic and clinical characteristics of this cohort are presented in Table 1.

Table 1. Characteristics of total patient sample and subgroups of limited SSc and diffuse SSc*
VariableTotal sample (n = 49)Limited subtype (n = 33)Diffuse subtype (n = 16)
  • *

    SSc = systemic sclerosis; HAQ = Health Assessment Questionnaire.

Age, years, mean ± SD53 ± 1254 ± 1153 ± 15
Sex, % female869469
Employed, %26366
Marital status, % married or cohabiting656956
Age at diagnosis, years, mean ± SD45 ± 1446 ± 1444 ± 14
Duration since diagnosis, years, mean ± SD9 ± 69 ± 610 ± 5
Subtype, % limited SSc67
Severe ischemia, %434931
 History of amputations, %141219
 Admission for vasodilators, %434931
 Digital debridement, %202119
Skin score, mean ± SD10 ± 86 ± 517 ± 7
Modified HAQ, mean ± SD1.12 ± 0.721.05 ± 0.731.28 ± 0.72
Pain score, mean ± SD44 ± 2443 ± 2847 ± 32

Illness representations.

Adjusted means, sample items, and standard deviations of the IPQ-R subscales are presented in Table 2.

Table 2. Means and standard deviations of IPQ-R subscales for full sample and limited SSc and diffuse SSc subtypes*
IPQ-R subscalesTotal sampleLimitedDiffuse
  • *

    Data presented as mean ± SD. IPQ-R = Illness Perception Questionnaire, Revised; SSc = Systemic Sclerosis.

  • Adjusted mean score.

  • Total mean score.

Timeline acute/chronic4.22 ± 0.634.17 ± 0.504.34 ± 0.88
 Six items including “My scleroderma will last a short time”; “My scleroderma is likely to be permanent rather than temporary”   
Timeline cyclical3.46 ± 0.993.48 ± 1.343.41 ± 0.50
 Four items including “The symptoms of my scleroderma change a great deal from day to day”; “My scleroderma is very unpredictable”   
Consequences3.76 ± 0.763.58 ± 0.744.18 ± 0.63
 Six items including “My scleroderma has had major consequences on my life”; “My scleroderma causes difficulties for those who are close to me”   
Personal control2.89 ± 0.723.07 ± 0.482.49 ± 0.98
 Six items including “There is a lot which I can do to control my symptoms”; “Nothing I do will affect my scleroderma”   
Treatment control2.97 ± 0.643.07 ± 0.572.73 ± 0.74
 Five items including “My treatment can control my scleroderma”; “There is nothing which can help my scleroderma”   
Illness coherence3.14 ± 0.972.86 ± 1.002.85 ± 0.88
 Five items including “The symptoms of my condition are puzzling to me”; “I have a clear picture or understanding of my condition”   
Emotional representations3.05 ± 0.992.89 ± 0.993.44 ± 0.88
 Six items including “I get depressed when I think about my scleroderma”; “My scleroderma does not worry me”   
Illness identity7.00 ± 3.306.59 ± 2.787.81 ± 4.15
 Fourteen items including stiff joints, pain, fatigue, loss of strength, breathlessness   
Causes   
 Psychological attributions, 6 items including stress or worry15.02 ± 4.2814.8 ± 3.7215.5 ± 5.45
 Risk factors, 7 items including hereditary, diet15.23 ± 4.3116.1 ± 2.8013.4 ± 6.23
 Immunity, 3 items including germ or virus, pollution8.54 ± 2.428.81 ± 2.247.93 ± 2.79
 Accident or chance, 2 items including accident or injury5.41 ± 1.395.06 ± 1.126.13 ± 1.64

Timeline: illness chronicity.

Nearly all (96%) patients believed that their condition was likely to be permanent, and only 12% believed that their SSc would improve in time. When examining adjusted mean score, the belief that SSc would last a long time was associated with younger age (r = −0.33, P < 0.05) and a younger age at diagnosis (r = −0.44, P < 0.01); it was positively related to a longer duration of illness (r = 0.38, P < 0.05) and a stronger illness identity (r = 0.43, P < 0.01). It bore no relationship with functional ability, pain, or skin score. Belief that SSc would last a long time was related to belief in more severe consequences (r = 0.47, P < 0.01), less treatment control (r = −0.37, P < 0.05), stronger emotional response (r = 0.43, P < 0.01), and more symptoms identified in relation to SSc (r = 0.43, P < 0.01) (Table 3).

Table 3. Correlations between illness perceptions, demographic, and clinical variables (n = 49)*
 12345678910111213
  • *

    HAQ = Health Assessment Questionnaire; VAS = visual analog scale.

  • Correlation is significant at the 0.01 level (2-tailed).

  • Correlation is significant at the 0.05 level (2-tailed).

1.Age             
2.Age at diagnosis by physician0.91            
3.Duration of illness since diagnosis−0.12−0.55           
4.Skin score0.050.050.02          
5.HAQ−0.040.010.020.22         
6.Pain (VAS)−0.11−0.05−0.070.090.62        
7.Timeline (acute/chronic)−0.33−0.440.38−0.04−0.160.22       
8.Timeline (cyclic)0.080.110.050.160.230.19−0.15      
9.Consequences−0.21−0.150.010.310.530.540.470.31     
10.Personal control−0.36−0.22−0.24−0.26−0.22−0.06−0.280.13−0.22    
11.Treatment control−0.26−0.13−0.23−0.28−0.16−0.11−0.370.05−0.250.49   
12.Illness coherence−0.28−0.270.06−0.25−0.14−0.250.18−0.26−0.030.25−0.04  
13.Emotional representations−0.25−0.04−0.220.110.190.380.43−0.040.65−0.26−0.16−0.21 
14.Illness identity−0.44−0.340.030.150.310.360.430.230.69−0.07−0.040.120.54

Cyclic presentation of SSc.

This subscale reflects beliefs in the cyclic nature of the illness. At least 50% of patients agreed or strongly agreed that SSc was cyclic or unpredictable in nature. Patients' overall belief that SSc was cyclic in nature was significantly related to belief in severe consequences of the condition (r = 0.31, P < 0.05).

Consequences of SSc.

Table 4 illustrates the beliefs in consequences associated with SSc. As expected, a majority of patients (78%) believed that SSc had serious consequences on their life, and caused difficulties for those people close to them (55%). Patients' beliefs that SSc had serious consequences was significantly associated with skin score (r = 0.31, P < 0.05), M-HAQ score (r = 0.53, P < 0.01), and pain (r = 0.54, P < 0.01).

Table 4. Beliefs in the severity of consequences of having scleroderma*
BeliefsTotal sample n = 49Limited subtype n = 33Diffuse subtype n = 16
  • *

    Figures are absolute numbers (%) of patients “agreeing” or “strongly agreeing” with each item.

My scleroderma is a serious condition37 (76)24 (73)13 (81)
My scleroderma has had major consequences on my life38 (78)24 (73)14 (88)
My scleroderma does not have much effect on my life3 (6)2 (6)1 (6)
My scleroderma strongly affects the way others see me19 (39)9 (27)10 (63)
My scleroderma has serious financial consequences23 (47)16 (48)7 (44)
My scleroderma causes difficulties for those who are close to me27 (55)17 (52)10 (63)

In terms of the relationship with other illness beliefs, serious consequences were associated with a strong illness identity (symptoms associated with the illness; r = 0.69, P < 0.01); beliefs that it will last a long time (r = 0.47, P < 0.01); the cyclic nature of the SSc (r = 0.31, P < 0.05), and the emotional representation they associated with their illness (how distressed it made them feel; r = 0.65, P < 0.01).

Personal control of SSc.

Almost one-third of patients (31%) believed they were able to personally control their SSc symptoms. Only 20% of patients believed there was nothing they could do to affect their SSc. Patients who felt more in control of their SSc also strongly believed that their treatment would control it (r = 0.49, P < 0.01). Personal control was not associated with any demographic or clinical variable with the exception of age (r = −0.36, P < 0.05), with younger patients having greater control.

Treatment control of SSc.

More than 40% of patients (Table 5) believed that treatments would control their SSc and only 27% endorsed the belief that nothing could help their SSc. Greater treatment control was associated with a belief that SSc would last a shorter amount of time (r = −0.37, P < 0.05) and increased personal control (r = 0.49, P < 0.01). It was not associated with any demographic or clinical variable.

Table 5. Beliefs in the treatment control of scleroderma*
BeliefsTotal sample n = 49Limited subtype n = 33Diffuse subtype n = 16
  • *

    Figures are absolute numbers (%) of patients “agreeing” or “strongly agreeing” with each item.

There is very little that can be done to improve my scleroderma19 (39)13 (39)6 (38)
My treatments will be effective in curing my scleroderma6 (12)3 (9)3 (19)
The negative affects of my scleroderma can be prevented (avoided) by my treatment15 (31)11 (33)4 (25)
My treatment can control my scleroderma21 (43)15 (45)6 (38)
There is nothing that can help my scleroderma13 (27)7 (21)6 (38)

Illness coherence.

Patients' understanding of their condition was somewhat limited, with around one-third of patients not understanding the vagaries of their condition. This was not significantly associated with any demographic or clinical variable or illness belief.

Emotional representation of SSc.

Approximately one-third of patients associated their SSc with feelings of anxiety, depression, and anger. More than 80% of patients endorsed the belief that their SSc worried them (Table 6). Patients' emotional response was associated with pain (r = 0.38, P < 0.05), chronic timeline (r = 0.43, P < 0.01), consequences (r = 0.65, P < 0.01), and symptoms they associated with SSc (r = 0.54, P < 0.01). It was not associated with any demographic variable, functional ability, or skin score.

Table 6. The emotional representation associated with scleroderma*
BeliefsTotal sample n = 49Limited subtype n = 33Diffuse subtype n = 16
  • *

    Figures are absolute numbers (%) of patients “agreeing” or “strongly agreeing” with each item.

I get depressed when I think about my scleroderma19 (39)12 (36)7 (44)
When I think about my scleroderma I get upset17 (35)11 (33)6 (38)
My scleroderma makes me feel angry17 (35)9 (27)8 (50)
My scleroderma does not worry me9 (18)6 (18)3 (19)
Having this scleroderma makes me feel anxious25 (51)16 (48)9 (56)
My scleroderma makes me feel afraid17 (35)11 (33)6 (38)

Symptoms associated with scleroderma: illness identity.

Participants endorsed an average of 7 (SD 3.3) symptoms in relation to their SSc. This is comparable to that obtained in a chronic pain population (mean 6.19, SD 2.4) (14). The most common symptoms patients reported experiencing since the onset of the condition were stiff joints (79%), pain (75%), fatigue (75%), and loss of strength (73%). The least frequently reported symptoms were headache (23%) and sore throat (25%). Figure 1 illustrates the percentage of patients who experienced each of the named symptoms since the onset of their condition.

thumbnail image

Figure 1. Scleroderma-related symptoms experienced.

Download figure to PowerPoint

The number of symptoms patients reported as being due to their SSc was associated with pain report (r = 0.36, P < 0.05) and functional ability (r = 0.31, P < 0.5) and was inversely related to age (r = −0.44, P < 0.01) and age at diagnosis (r = −0.34, P < 0.05). There was no relation to skin score. Table 3 illustrates the relationship of illness identity with the other illness beliefs.

Beliefs about causes.

The most commonly reported agent of causation of SSc was stress or worry, with 53% identifying this factor. Altered immunity (49%) and chance or bad luck (47%) were also identified as being strong causative agents. All other causal items (personality, accident, smoking, alcohol, aging, emotional state, overwork, family problems, mental attitude, own behavior, pollution, poor medical care, diet, germ or virus, hereditary) were identified by <22% of patients.

The effect of disease parameters on illness beliefs.

Independent t-tests were carried out to examine any difference in illness beliefs between those patients classified as having limited or diffuse cutaneous SSc and severe or nonsevere ischemia. These indicated that patients with diffuse cutaneous SSc had stronger beliefs in severe consequences associated with their SSc (t = −2.63, P < 0.01; adjusted mean scores 4.18 and 3.18, respectively) and less personal control of the SSc (t = 2.70, P < 0.01; adjusted mean scores 2.49 and 3.07, respectively) as compared with those patients with limited cutaneous SSc. No other differences were evinced. Furthermore, there were no significant differences in illness beliefs between patients classified as having severe and nonsevere ischemia.

Multiple regression analysis was used to investigate whether the cognitive representations patients held about their SSc could explain the variance in the emotional representations or response to their illness. Because of the low subject numbers to variables ratio, a series of regressions were undertaken to identify which of the variables were independently associated with emotional representations. This indicated that the demographic variables age and sex were not related; the clinical variable pain was significantly related (F[1,45] = 7.21, P < 0.01) and entered at block 1 of the regression; and the illness perceptions of identity (F[1,45] = 17.73, P < 0.001), timeline (F[1,45] = 9.9, P < 0.01), and consequences (F[1,45] = 32.89, P < 0.001) were entered in block 2. The results are presented in Table 7 with significant beta values indicated. These results show that pain accounted for 19.2% of the variance in emotional representations, whereas illness representations accounted for a significant additional 32.3% of the variance. In terms of standardized regression coefficients, only perceptions of perceived consequences (β = 0.64, t = 3.50, P = 0.001) reached significance.

Table 7. Regression analyses testing the significance of change in explained variance on emotional representations*
Variables% AdjR2% R2 changeFPβ
  • *

    AdjR2 = adjusted correlation coefficient.

  • P < .001.

Clinical parameters     
 Pain17.319.29.760.0030.44
Illness perceptions46.532.310.110.001 
 Illness identity    0.04
 Perceived consequences    0.64
 Timeline    0.01

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. REFERENCES

This study set out to examine patients' cognitive appraisals or beliefs about their SSc, the emotional impact associated specifically with it, and the relationship of these beliefs to clinical and demographic variables. The results have shown that beliefs patients hold about their SSc are not determined by the 4 clinical parameters examined. This is in line with previous research literature in the area, which supports the assertion that objective severity of SSc is not associated in a linear manner with patients' subjective experience of their condition, whether that be distress, coping, or beliefs (1, 4, 5).

The clinical parameters of skin score, severity of ischemia, and disease subtype were not found to be related to increased symptom reporting (illness identity). Perhaps predictably, those with the more severe diffuse subtype did report increased consequences of their SSc and less personal control of their condition, but they did not differ in terms of their beliefs about treatment control, understanding of their condition, or their emotional responses. Although stronger beliefs in SSc having serious consequences does not necessarily equate to depressive symptoms, negative cognitions regarding the consequences of having SSc may be pertinent. Indeed, a study in RA (11) identified significant differences between depressed and nondepressed patients on both the consequence and control/cure dimensions of the original IPQ (20). Additionally, 1 study has reported control appraisals to be of importance in predicting psychological distress in SSc (5).

In the current study, multiple regression analysis indicated that beliefs associated with consequences of the condition strongly affect the patients' emotional response to the condition over and above other clinical and demographic variables. A similar pattern of results has been reported in multiple sclerosis (14) and implies emotional response, as assessed in the IPQ-R, has more to do with illness beliefs than clinical severity. It is, however, important at this juncture to recognize that the emotional representations subscale contained within the IPQ-R is not intended as a substitute measure of general mood, but rather a measure of emotional responses specifically generated by the condition. Given the apparent absence of a difference between disease subgroups and their emotional representations, and the presence of a significant difference in terms of consequences associated with the condition, it would appear important to consider the impact of SSc on both disease-specific and more general levels of psychological distress.

In terms of illness coherence, in excess of 50% of the sample felt that they did not have a clear picture or understanding of their SSc. It has been suggested that this may be important in terms of adjustment to illness. This is an important observation, because previous studies have shown that not only do patients want to learn about their condition and indeed may profit clinically from such information, but also that physicians may underestimate the degree to which this is so (21–23). Patients with a good understanding of their disease are more likely to achieve emotional distance from it and become more self motivated, thereby increasing their sense of control.

The results of the study are somewhat surprising in that more than 50% of patients ascribed the cause of their condition to stress. Although there is a comprehensive literature linking stress with the onset and exacerbations of a range of conditions (24, 25), there is a paucity of research associating stress with onset and exacerbations of SSc (26). In the absence of any evidence for a physiologic explanation linking stress and SSc, it may be that behavioral factors (such as poor sleep and engaging in less self care at times of distress, with the consequence of increased physical symptomatology) may link patients' perceptions of psychological distress with causes of the condition. The subject numbers within this study were too low to permit any further analysis of the cause subscale of the IPQ-R; however, it may be of interest in further work to disentangle the causes people attribute to the onset of their condition. Indeed, 1 study of people with psoriasis identified that pathologic worrying was strongly associated with the attribution of an emotional cause of their condition (27).

In line with this, it is interesting to note that within the current study a large proportion of patients were shown to worry about their condition. Although we did not undertake an examination of worrying in particular and are unable to make any firm statements in relation to this, worry has been demonstrated to have some clear clinical implications in a number of other conditions. Chronic worrying has been shown to be a significant risk factor for myocardial infarction at 20-years followup in the normative aging study (28), and within RA, worry is a strong predictor of poor functional status at 1-year followup (29). The findings of the current study would suggest examining this aspect of psychological adjustment further in patients with SSc.

It is recognized that a limitation of this study is the small sample size. However, the population included within the current study represents approximately one-third of current attendees at the tertiary referral clinic for SSc. Given the consecutive nature of sampling undertaken and the high response rate, the findings are considered representative of such a tertiary population. Whether the findings are generalizable to other populations of SSc patients is unknown.

The aim of the current article was to describe patients' beliefs about their SSc and relate these to clinical features of the condition. Additional work will be well placed examining the relationship of these illness beliefs to psychological adaptation and adjustment in patients with SSc. We are currently undertaking an examination of such.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. REFERENCES
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