• Systemic lupus erythematosus;
  • Coping skills;
  • Health-related quality of life;
  • Stress


  1. Top of page
  2. Abstract


To identify coping strategies used by patients with systemic lupus erythematosus (SLE), and to assess the influence of main clinical and coping variables on health-related quality of life (HRQOL).


We administered the Coping Orientation to Problems Experienced and the Short Form 36 questionnaire to a group of 144 patients with SLE and a group of 129 healthy controls. At the time of the psychological assessment, all patients underwent a complete clinical and laboratory evaluation.


SLE patients had higher scores in acceptance (P < 0.001) and turning to religion (P = 0.05) and lower scores in planning (P = 0.001), suppression of competing activities (P = 0.010), restraint coping (P = 0.031), focusing on and venting of emotion (P = 0.009), and strategies focused on problem (P = 0.012) compared with controls. By means of linear regression analysis, HRQOL in SLE patients seemed to be influenced positively by restraint coping and positive reinterpretation and growth, and negatively by focusing on and venting of emotion, behavioral disengagement, and mental disengagement. When clinical variables were added to the multivariate analysis for coping strategies, more significant regression models that included joint pain were obtained.


In facing stressful situations, patients with SLE tend to use coping skills that are generally adopted for events perceived as nonmodifiable. Strategies that show a passive attitude and joint pain seem to impair these patients' HRQOL.


  1. Top of page
  2. Abstract

Quality of life or health-related quality of life (HRQOL) (1, 2) are terms that refer to the physical, psychological, mental, and social aspects of the concept of health, which are in turn influenced by life experiences and expectations of the patient. In patients affected with systemic lupus erythematosus (SLE), a decrease in HRQOL has been observed (3–6). The reason why this occurs is still a matter of debate. The involvement of many organs, joint pain, fatigue, and chronic evolution of the disease are all factors that affect not only physical but also psychological well-being and that greatly influence quality of life (3, 4).

According to Lazarus and Folkman's theory (7), the appraisal of a disease as uncontrollable, threatening, and limiting is likely to worsen quality of life, reduce the adjustment to the disease, and finally produce a stress that may exceed the resources of the person (8). Stress occurs when individuals perceive that they cannot adequately cope with the demands being made of them or with threats to their well-being (9); stress results from an imbalance between demands and resources (7). The chronic evolution of the illness acts like a long-term stressor, which raises the probability of developing anxious or depressive symptoms (10, 11).

The worsening of quality of life as well as psychological symptoms are often independent from SLE indicators such as disease activity or permanent damage (11, 12). In fact, it is well known that individuals react differently in the face of the same stressful events. Therefore, it is important to find out which variables can influence the patient's well-being. The use of different coping strategies might play a relevant role (13–15). According to Lazarus and Folkman, coping consists of “constantly changing cognitive and behavioral efforts to manage, reduce, or tolerate external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (7).

In health psychology there are 2 major types of coping strategies: problem focused (aimed at doing something active to modify a stressful situation, namely directed at reducing the threats and losses due to the illness) and emotional focused (aimed at thinking or feeling in a different way about a stressful situation, namely directed at reducing the negative emotional consequences) (16). The first type of strategy is typically used when the situation is perceived as controllable and changeable, whereas the second is used when the situation is perceived as less controllable and modifiable. Both types of coping are important, if used properly.

Another distinction present in the literature is between active coping (behavioral or psychological efforts to change the stressful situation or the way one thinks or feels about a stressful situation) and avoidant coping (behaviors, such as drug use, or mental conditions, such as daydreaming about things other than the stress event, that move away from the stress event). Avoidant coping strategies are considered a psychological risk factor or a disadaptive response to stressful events if used regularly (17). Some studies have demonstrated the possibility of using specific training to strengthen the adaptive effect of coping (18–20). Furthermore, coping-skill training enhances HRQOL in patients with chronic illness (21).

The objective of this study was to detect which coping strategies are used by patients with SLE compared with a healthy population. Our study was particularly focused on the trait approach of the coping, i.e., the coping strategy used across a range of events and not the coping strategy used in a specific situation. We also assessed the influence of coping strategies on HRQOL. In fact, comprehension of the influence of different coping strategies on HRQOL in patients with SLE would allow coping training to be specifically adjusted to this type of patient.


  1. Top of page
  2. Abstract

Patients and controls.

We studied 144 consecutive outpatients with SLE seen in a single rheumatology unit in the Division of Rheumatology, Padua University. To avoid the influence of the sex variable in the use of the coping strategy, only women were recruited. All patients were white, with a mean ± SD age of 38.2 ± 11.9 years (range 18–65 years). The mean ± SD disease duration was 11.2 ± 6.8 years (range 1–39 years). All patients satisfied at least 4 of the American College of Rheumatology (ACR) criteria for the classification of SLE (22) and had always been followed up according to the diagnostic and therapeutic guidelines reported by the ACR (23).

We used the term definitions of SLE specific features included in the ACR criteria (22). Fatigue was defined as a symptom that limits usual activities of daily living. Disease activity was assessed with the European Consensus Lupus Activity Measure (ECLAM) (24) and permanent damage was assessed with the Systemic Lupus International Collaborating Clinic/American College of Rheumatology (SLICC/ACR) damage index (25).

Antinuclear antibodies and anti–double-stranded DNA were detected by indirect immunofluorescence technique, using HEp-2 cells and Crithidia luciliae as a substrate. Anti–extractable nuclear antigen antibodies (anti-Sm, anti–U1 RNP, anti-Ro/SSA, anti-La/SSB) were tested by counterimmunoelectrophoresis technique, using sera provided by the Centers for Disease Control and Prevention (Atlanta, GA) as control sera. Lupus anticoagulant was detected by means of the Russell viper venom time, and anticardiolipin antibodies were detected by enzyme-linked immunosorbent assay.

At the time of the study, no patients were taking antidepressants and/or antipsychotic drugs, being treated with psychotherapy, or following a patient education program. The control group included 129 healthy individuals, all women with a mean ± SD age of 38.7 ± 12.1 years (range 18–68 years).

Coping assessment.

The Coping Orientation to Problems Experienced (COPE) is a self-report questionnaire that identifies 15 different coping strategies (26). It is made up of 60 multiple choice items (26–28). Rough data are elaborated by a program that calculates the score of 15 scales corresponding to 15 coping styles (the most representative items for each coping strategy are in parentheses): 1) active coping: taking active steps to circumvent the stressor (“I do what has to be done, one step at time”; “I take additional action to try to get rid of the problem”); 2) planning: thinking about how to cope with a stressor (“I make a plan of action”; “I think about how I might best handle the problem”); 3) suppression of competing activities: trying to avoid becoming distracted by other things (“I keep myself from getting distracted by other thoughts or activities”; “I try hard to prevent other things from interfering with my efforts at dealing with this”); 4) restraint coping: waiting until an appropriate opportunity to act presents itself (“I force myself to wait for the right time to do something”; “I make sure not to make matters worse by acting too soon”); 5) seeking social support for instrumental reasons: seeking advice, assistance, or information (“I try to get advice from someone about what to do”; “I talk to someone to find out more about the situation”); 6) seeking social support for emotional reasons: receiving moral support (“I discuss my feelings with someone”; “I try to get emotional support from friends or relatives”); 7) focusing on and venting of emotion: ventilating feelings (“I get upset and let my emotions out”; “I feel a lot of emotional distress and I find myself expressing those feelings a lot”); 8) behavioral disengagement: reducing one's effort to deal with the stressor (“I reduce the amount of effort I am putting into solving the problem”; “I admit to myself that I can not deal with it, and I quit trying”); 9) mental disengagement: distracting one's self from thinking about the problem (“I daydream about things other than this”; “I go to movies or watch TV to think about it less”); 10) alcohol and drug disengagement: alcohol and drug use (“I drink alcohol or take drugs, in order to think about it less”); 11) denial: denying the presence of the stress (“I refuse to believe that it has happened”; “I act as though it has not even happened”); 12) positive reinterpretation and growth: construing a stress transaction in positive terms (“I look for something good in what is happening”; “I try to grow as a person as a result of the experience”); 13) acceptance: accepting reality (“I learn to live with it”; “I accept that this has happened and that it can not be changed”); 14) turning to religion (“I pray more than usual”; “I put my trust in God”); 15) humor: turning the situation into ridicule.

A higher score on a certain scale means a high use of that strategy. However, there is no cutoff for normality in single scales. The total score, determined by the sum of all the single scales, does not have any meaning. The COPE has been validated for use in Italy (27). The Italian version of COPE evidenced a good internal consistency; α typically ranged from 0.60 to 0.92, with the exceptions of 3 subscales: active coping (α = 0.43), mental disengagement (α = 0.31), and behavioral disengagement (α = 0.46).

Quality of life assessment.

HRQOL was assessed using the Short Form 36 (SF-36) questionnaire. The SF-36 is a generic instrument with scores that are based on responses to individual questions, which are summarized into 8 scales, each of which measures a health concept. These scales include function domains and aspects of well-being as follows: physical function, role physical, bodily pain, general health, vitality, social function, role emotional, and mental health. The SF-36 has been validated for use in Italy (29); the internal consistency ranged from 0.77 to 0.93 and the test–retest coefficient, calculated in patients with chronic illness, ranged from 0.72 to 0.89 (30). The originators of the SF-36 have developed algorithms to calculate 2 psychometrically based summary measures: the Physical Component Summary Scale Score (PCS) and the Mental Component Summary Scale Score (MCS). These 2 summary scale scores, weighted according to normative data, are scored from 0 to 100, with higher scores reflecting better HRQOL (31, 32). The PCS and MCS provide greater precision, reduce the number of statistical comparisons needed, and eliminate the floor and ceiling effects noted in several of the subscales. In our study, we used PCS, MCS, and total score to avoid a large loss of variables.

Statistical analysis.

Statistical analysis included t-test for all COPE and SF-36 scales and Mann-Whitney U test for variables not normally distributed (results were the same). Probability values less than 0.05 were considered significant. Stepwise regression analysis was performed to define the role of COPE on SF-36 for patients and controls separately. Moreover, hierarchical regression analysis was carried out to assess the impact of clinical variables as the first block and COPE scale scores as the second block on SF-36 in the patient group. We considered the clinical variables as the first block to evaluate whether coping strategies are able to influence HRQOL in addition to the clinical variables. Among clinical variables, we considered all those listed in Table 1 plus the ECLAM, SLICC/ACR damage index, and disease duration.

Table 1. Prominent SLE features overall and at the time of the evaluation in 144 patients enrolled in the study*
FeatureOverallAt time of evaluation
  • *

    Values are the number (percentage). SLE = systemic lupus erythematosus; CNS = central nervous system; anti-dsDNA = anti–double-stranded DNA; anti-aCL = anticardiolipin antibody; LAC = lupus anticoagulant.

Arthritis109 (75.7)13 (9.0)
Joint pain128 (88.8)50 (34.7)
Fatigue62 (43)12 (8.3)
Rash79 (54.9)12 (8.3)
Raynaud's phenomenon65 (51.6)29 (20.1)
Serositis35 (24.3)9 (6.2)
Hematologic involvement120 (83.3)68 (47.2)
Glomerulonephritis57 (39.6)79 (54.9)
CNS involvement16 (11.1)5 (3.5)
Anti-dsDNA109 (75.7)75 (52.1)
Anti-U1 RNP62 (43)44 (30.5)
Anti-Ro/SSA59 (41)41 (28.5)
Anti-La/SSB19 (13.2)13 (9.0)
Anti-aCL42 (29.2)52 (36.1)
LAC32 (22.2)24 (16.7)


  1. Top of page
  2. Abstract

At the time of the study, our patients had a mean ± SD ECLAM score of 1.4 ± 1.1 (range 0–5). The mean ± SD SLICC/ACR damage index score was 0.3 ± 0.6 (range 0–4); 35 patients (24.3%) had damage in at least 1 of the systems considered in the damage index. The mean ± SD damage index score of these 35 patients was 1.29 ± 0.7 (range 1–4). The main clinical and serologic features of the group of patients are reported in Table 1.

The mean scores of patients and controls obtained by the different coping strategies are reported in Table 2. The SLE patients had higher scores compared with controls in 2 coping strategies (i.e., the strategies are used with a higher frequency): acceptance (P < 0.001) and turning to religion (P < 0.05). Scores for planning (P = 0.001), suppression of competing activities (P = 0.010), restraint coping (P = 0.031), and focusing on and venting of emotion (P = 0.009) were higher in the healthy controls. It is worth noting that coping strategies of our patients were not influenced by age.

Table 2. Mean ± SD scale scores of the Coping Orientation to Problems Experienced in patients and healthy controls with relative t-test P values*
Coping strategiesSLE patients (n = 144)Healthy controls (n = 129)P
  • *

    SLE = systemic lupus erythematosus; NS = not significant.

Turning to religion9.97 ± 3.98.98 ± 4.30.048
Active coping11.9 ± 2.512.2 ± 2.6NS
Planning10.1 ± 3.011.4 ± 2.70.001
Suppression of competing activities8.5 ± 2.69.3 ± 2.50.010
Restraint coping9.7 ± 2.510.4 ± 2.70.031
Acceptance11.6 ± 2.910.2 ± 2.9< 0.001
Positive reinterpretation and growth11.6 ± 2.512.1 ± 2.7NS
Seeking social support for instrumental reasons9.7 ± 3.110.1 ± 2.9NS
Seeking social support for emotional reasons9.0 ± 2.89.5 ± 2.9NS
Focusing on and venting of emotion9.1 ± 2.910.0 ± 2.70.009
Humor7.1 ± 2.97.5 ± 3.0NS
Denial6.5 ± 2.16.3 ± 2.2NS
Behavioral disengagement6.0 ± 1.86.4 ± 2.2NS
Mental disengagement8.7 ± 2.58.4 ± 2.5NS
Alcohol and drug disengagement4.3 ± 1.14.5 ± 1.8NS

We investigated the relationships between coping and clinical indexes. The strategy of seeking social support for instrumental reasons seemed to be used less by patients with joint pain compared with patients without joint pain (mean ± SD score 10.1 ± 3.1 versus 8.9 ± 3.0, P = 0.03). All other clinical parameters, including SLICC/ACR damage index and ECLAM scores, did not seem to influence coping in SLE patients.

HRQOL was lower in patients compared with healthy controls (mean ± SD PCS 70.9 ± 20.3 versus 79.5 ± 11.7, P < 0.001; mean ± SD MCS 66.8 ± 20.2 versus 72.8 ± 15.7, P < 0.007). The values of the 8 SF-36 subscales, PCS, and MCS of both patients and controls are reported in Table 3. In the SLE group, the MCS was negatively influenced by behavioral disengagement and focusing on and venting of emotion, and was positively influenced by positive reinterpretation and growth (R2 = 0.22, P < 0.001) (Table 4). PCS was negatively influenced by behavioral disengagement and mental disengagement, and was positively influenced by restraint coping (R2 = 0.15, P < 0.001) (Table 4).

Table 3. Mean ± SD scores of the 8 SF-36 subscales, PCS, and MCS in the patient and control groups*
SF-36 subscaleSLE patients (n = 144)Controls (n = 129)P
  • *

    Significance was tested with the Mann-Whitney U test. SF-36 = Short Form 36; PCS = Physical Component Summary Scale Score; MCS = Mental Component Summary Scale Score; SLE = systemic lupus erythematosus; NS = not significant.

Physical function83.6 ± 20.292.7 ± 11.7< 0.0001
Role physical71.3 ± 37.684.8 ± 26.0< 0.001
Bodily pain75.5 ± 28.769.1 ± 21.2< 0.039
General health53.1 ± 21.571.3 ± 15.3< 0.0001
Vitality56.6 ± 21.062.5 ± 15.9< 0.010
Social function70.8 ± 22.977.5 ± 20.1< 0.011
Role emotional72.6 ± 36.780.7 ± 30.9< 0.050
Mental health67.2 ± 19.170.3 ± 17.4NS
PCS70.9 ± 20.379.5 ± 11.7< 0.001
MCS66.8 ± 20.272.8 ± 15.7< 0.007
Table 4. Multiple linear regression analysis (best model): influence of coping strategies on SF-36 scores in the 144 SLE patients*
 Standard regression coefficienttP
  • *

    SF-36 = Short Form 36; SLE = systemic lupus erythematosus; MCS = Mental Component Summary Scale Score; PCS = Physical Component Summary Scale Score; R2 = multiple coefficient of determination.

  • R2 = 0.22.

  • R2 = 0.15.

Dependent variable: MCS   
 Independent variables   
  Behavioral disengagement−0.30−3.91< 0.001
  Positive reinterpretation and growth0.222.970.003
  Focusing on and venting of emotion−0.22−2.860.005
Dependent variable: PCS   
 Independent variables   
  Behavioral disengagement−0.30−3.74< 0.001
  Restraint coping0.192.450.015
  Mental disengagement−0.17−2.150.033

We also evaluated if the introduction of clinical variables would raise the statistical significance of the linear regression model based on coping strategies. In hierarchical linear regression analysis, MCS seems to be influenced negatively by joint pain, behavioral disengagement, and focusing on and venting of emotion, and positively influenced by positive reinterpretation and growth (R2 = 0.27, P < 0.001) (Table 5). PCS seems to be influenced negatively by joint pain and behavioral disengagement (R2 = 0.21, P < 0.001) (Table 5). We did not find any influence of coping strategies on HRQOL in the healthy controls. This result could be due to a ceiling effect of the SF-36 scores observed in healthy women.

Table 5. Hierarchical linear regression analysis (best model): influence of coping strategies on SF-36 scores in the 144 SLE patients*
 Standard regression coefficienttP
  • *

    SF-36 = Short Form 36; SLE = systemic lupus erythematosus; MCS = Mental Component Summary Scale Score; PCS = Physical Component Summary Scale Score; R2= multiple coefficient of determination.

  • R2 = 0.27.

  • R2 = 0.21.

Dependent variable: MCS   
 Independent variables   
  Joint pain−0.29−2.970.004
  Behavioral disengagement−0.28−3.68< 0.001
  Focusing on and venting of emotion−0.23−3.070.028
  Positive reinterpretation and growth0.212.880.005
Dependent variable: PCS   
 Independent variables   
  Joint pain−0.27−3.59< 0.001
  Behavioral disengagement−0.22−2.890.004


  1. Top of page
  2. Abstract

Our study focused on coping strategies used by female patients with SLE. Men differ from women in the use of some coping strategies (26). Because the percentage of men with SLE is very low, we preferred to involve only women, thereby avoiding a possible disturbing variable in the analysis of the results.

Our cohort of patients with SLE was similar in terms of clinical and immunologic features to other cohorts of patients with SLE with a mean disease duration of ∼10 years (33). At the time of evaluation, patients had low ECLAM and SLICC/ACR scores, which could be due to the fact that they were all outpatients, were of white race, and were affected with mild disease. However, other studies have observed a low prevalence of damage in white patients (34).

We found some differences in the use of coping strategies between patients and controls. Acceptance and turning to religion seem to be used more often by patients than by controls. The more frequent use of acceptance by patients may be due to the fact that all of them were experiencing the disease itself, a key and nonmodifiable event that has to be faced and integrated into their own lives. In fact, chronic disease induces a permanent modification of a person's health and lifestyle, even when the disease course is controlled by specific therapies. With regard to turning to religion, we have to consider that religion is very relevant in Italy (a Catholic country), and when a person is faced with a critical event leading to uncertainty, that person feels the need to turn to those aspects of life that provide security and solace. Planning, suppression of competing activities, restraint coping, and problem focused strategies were used less by patients compared with healthy controls. These coping strategies are usually used by individuals to actively face critical but modifiable situations. The fact that patients used these strategies less frequently might reflect their vision of the disease: an event in front of which they feel impotent and that induces a passive attitude.

Another coping strategy used less in patients than in controls was focusing on and venting of emotion. A reduced use of this strategy by patients with SLE can be considered a good sign of adaptation. In fact, this coping strategy can be useful during acute crisis, but it can have the opposite effect when it is adopted long term, such as in the case of chronic disease. It is worth noting that SLE patients did not use coping strategies more frequently than healthy controls. This result was unexpected because patients have to face a stressful chronic event.

There are no absolute adaptive or disadaptive strategies. The suitability of the strategies depends on the situation one has to face. The use of a restricted number of strategies raises their disadaptive potential. Patients with SLE are more exposed to that risk, although it is unclear what determines this situation. It can be hypothesized that patients with SLE tend to behave like sick persons most of the time, thus using strategies suitable for stressful events (35, 36) even in the face of everyday nonstressful situations.

The only clinical variable that seems to influence coping strategies is joint pain. Patients with joint pain use the strategy of seeking social support for instrumental reasons less frequently than those who do not have joint pain. One possible explanation is that persons with chronic diseases look for information about their illness only after their physical symptoms are resolved (35, 36).

Linear regression analysis showed some interesting associations in patients with SLE. Behavioral disengagement was associated with a worsening of HRQOL, whereas the use of positive reinterpretation and growth seemed to improve HRQOL. With the first strategy, the individual reduces and eventually interrupts efforts to face the critical situation because he or she is convinced that nothing can change the situation. On the contrary, the second strategy implies a positive attitude: facing a crisis situation, the subject tries to elaborate and integrate it into his or her own life system, and uses it as a source of personal growth. An important difference between these 2 coping methods is that the first implies a passive attitude towards everyday situations, whereas in positive reinterpretation and growth the person plays an active role. The importance of an active attitude in preserving HRQOL concurs with the results of previous studies (18, 19).

The use of focusing on and venting of emotion seemed to worsen MCS. This is an emotion-focused strategy that is disadaptive if it is used in facing recurring events. The use of restraint coping was associated with higher levels of PCS. This strategy shows a person's ability to wait for a suitable moment to solve a stressful situation. Finally, the use of mental disengagement was associated with a lower level of PCS. Mental disengagement shows a disregard for reality, and in the case of a disease this strategy can reduce the compliance of patients, leading to a complete refusal of any treatment.

When we introduced the effect of clinical variables into the multivariate analysis, joint pain was found to be associated with lower levels of MCS and PCS. These data confirm what has already been verified in previous studies on the worsening effect of chronic pain on HRQOL and on psychological well-being (2, 37). The introduction of the clinical variable raised the statistical significance of the 2 multivariate models, whereas some coping strategies, including behavioral disengagement, positive reinterpretation and growth, and focusing on and venting of emotion, remained in the model (Table 5).

In conclusion, only a very limited number of coping strategies were used more frequently by patients compared with healthy controls. These strategies are used for events perceived as nonmodifiable, and their use may expose patients to a higher risk of maladjustment in stress situations. Moreover, HRQOL seems to be influenced not only by joint pain, as we have previously demonstrated (2, 38), but also by some coping strategies. In particular, HRQOL seems to be worsened by strategies that reveal a passive attitude of the individual and improved by strategies that require an active attitude.

Psychological counseling and coping-skill training that helps patients strengthen the use of strategies that improve HRQOL seem to be important, and previous studies have shown the efficacy of these types of interventions (18, 19, 39, 40). Coping-skills training involves the acquisition of a variety of skills and tools to manage pain and stressors: cognitive restructuring, increasing of self efficacy and self esteem, breathing and relaxation exercises, social problem solving, communication-skills training, and guided self dialog. Coping-skills training is often a group therapy and uses psychoeducation, role playing, homework, and other cognitive and behavioral techniques. However, it is still unclear why the efficacy of this type of intervention has a limited effect over time. Training on coping may not be enough, and it might be useful to modify, through a specific intervention, the tendency of patients with SLE to act in many everyday life situations as if they were facing problems related to the disease.


  1. Top of page
  2. Abstract
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