Rheumatol Int (2014) 34:597–604 DOI 10.1007/s00296-013-2852-7
REVIEW
Negative affect in systemic sclerosis Leticia Leon • Lydia Abasolo • Marta Redondo • Miguel Angel Perez-Nieto • Luis Rodriguez-Rodriguez • ´ ngel Jover Maria Isabel Casado • Rafael Curbelo • Juan A
Received: 11 June 2013 / Accepted: 23 August 2013 / Published online: 27 September 2013 Ó Springer-Verlag Berlin Heidelberg 2013
Abstract Negative affect appears frequently in rheumatic diseases, but studies about their importance and prevalence in systemic sclerosis patients are scarce, and the results are inconclusive separately. We conducted a comprehensive search on April 2013 of PubMed, Medline, and PsycINFO databases to identify original research studies published. A total of 48 studies were included in this systematic review. We found negative emotions have very high levels in these patients, compared to both healthy population other chronic rheumatic patients assessed with the same instruments and cutoffs. Depression has been, of the three negative emotions that we approach to in this review, the most widely studied in systemic sclerosis, followed by anxiety. Despite the fact that anger is a common emotion in these diseases is poorly studied. Methodologic issues limited the ability to draw strong conclusions from studies of predictors. Disease-specific symptoms (swollen joints, gastrointestinal and respiratory symptoms and digital ulcers) and factors related to physical appearance were associated with negative emotions. Interdisciplinary care and biopsychosocial
L. Leon (&) L. Abasolo L. Rodriguez-Rodriguez ´ . Jover J. A Rheumatology Department, Hospital Clı´nico San Carlos, Calle Martı´n Lagos s/n, 28040 Madrid, Spain e-mail:
[email protected] L. Leon M. Redondo M. A. Perez-Nieto Health Sciences School, Universidad Camilo Jose´ Cela, Madrid, Spain M. I. Casado Health Sciences School, Universidad Complutense, Madrid, Spain R. Curbelo Instituto de Salud Musculoesqueletica, Madrid, Spain
approach would have a great benefit in the clinical management of these patients. Keywords Systemic sclerosis Depression Anxiety Anger Systematic review
Introduction Negative affect is a general dimension of subjective distress and unpleasurable engagement that includes a variety of aversive mood states. Negative affect usually coexists with chronic illness and may influence an individual’s functional status, symptom perceptions, and health-related quality of life [1]. The study of negative affect in chronic diseases, such as cardiovascular disease or diabetes, is growing, due to the enormous influence it has shown in the experience and adaptation as well as course of the illness [2–4]. Although this is a very wide concept, our study will focus on the three main negative emotions (anxiety, anger, and depression), since it is known that these emotions are an important issue in these diseases, contributing significantly to their course. Systemic sclerosis (SSc) is an autoimmune connective tissue disease characterized by abnormal fibrotic processes that can affect multiple organ systems, including the skin, kidneys, lungs, and gastrointestinal tract as well as cause immune dysfunction and vascular injury. As a chronic rheumatic debilitating disease, the aims of the therapeutic measures are mainly relieving symptoms, reducing organ dysfunction, and attempting to slow the progression of the disease. Negative affect appears frequently in rheumatic diseases. Generally, studies of the negative emotions included a whole range of patients with rheumatic diseases [5–8],
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but systemic sclerosis used to be excluded. Studies about the importance and prevalence of these negative emotions in systemic sclerosis patients are scarce, and the results are inconclusive separately. The chronic features of the disease and its serious complications, disabling potential, and how that affects the physical appearance make the systemic sclerosis patient prone to high levels of negative affect. The aim of this work was to review the evaluation, prevalence, and impact of negative emotions on systemic sclerosis.
Methods A literature search was performed through PubMed, Medline, and PsycINFO databases, for the years 1961–2013 and by trained researchers using comprehensive free text and MeSH synonyms of ‘‘depression,’’ ‘‘anxiety,’’ ‘‘anger,’’ ‘‘hostility,’’ ‘‘mood disorders,’’ ‘‘negative affect,’’ ‘‘negative emotions,’’ ‘‘systemic sclerosis (SSc),’’ and ‘‘scleroderma.’’ We placed no restrictions on time. For included articles, reference lists and the ‘‘Related articles’’ function on PubMed (www.pubmed.gov) were also assessed for possible inclusions. All English language scientific papers pertaining to those subjects were reviewed (Fig. 1). Articles were excluded if they consisted of case reports, if it were a letter article, or if only a meeting abstract was provided. Studies with mixed patient populations were included only if data on patients with SSc were reported separately. Titles were reviewed, followed by abstracts of selected titles, and, finally, potentially eligible articles. If an article has been selected for further consideration during title or
288 articles 127 duplicates 93 excluded 161
articles
articles
potentially
identified
by
relevant title
and
abstract
68
articles
selected
for
full-text
review 48 finally included in review Fig. 1 Flow chart of the selection of studies. Search strategy
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abstract review, the article was included in the next stage of review. The review was subdivided as follows: (1) Depression in SSc; (2) Anxiety and SSc (3) Anger and SSc.
Results Depression and SSc Depressive symptoms or depressed mood is an extreme pole of sadness in which subjects are conditioned by a marked negative trend. Throughout this review will include all this construct sadness/depressed mood/depression under a global group specifying whether study collects it. It is the negative emotion that appears more frequently as a result of chronic type disease that causes pain, disability, and changes in personal appearance. Pain is a major stressor that significantly affects the mood; a patient with a chronic disease could not be able to use distraction strategies, since they are only effective in acute pain, which could reach depression, and the patient needs to live with it. A huge number of questionnaires exist to assist in the identification of depressed mood, although the diagnosis of clinical depression also requires a clinical interview. Table 1 shows the questionnaires used in SSc, with a methodological heterogeneity in the assessment of this emotion, ranging from traditional measures of depression to other specific for any type of disease [9–26]. Of these, the Center for Epidemiologic Studies Depression Scale (CES-D) has been validated specifically to measure depressive symptoms in patients with SSc [12, 13]. Patient Health Questionnaire depression scale (PHQ9) has also been recently validated, with the advantage over the previous version that has half the length, and is easier to administer and score [15, 16]. A frequent problem of these questionnaires is that scores could be influenced by somatic symptoms common in medical illness [27]. Depressed mood or mild depression may occur without vegetative symptoms that are prevalent in severe depression, such as sleep disturbance, change of appetite, and low energy. The prevalence of mild to moderate depressive symptoms appears in approximately 36–69 % of the patients [28–45]. The prevalence of moderate to severe depression is estimated around 20 % of patients [11, 28, 29, 32, 36, 39, 44], so higher percentage near 60 % exists in some recent studies [43, 46]. Within the severe depression, a study includes as different data the percentage of suicidal ideation, with 5 % of the sample responding affirmatively [29].
Rheumatol Int (2014) 34:597–604 Table 1 Self-report questionnaires to assist in the screening of depressed mood in systemic sclerosis HADS, Hospital Anxiety and Depression Scale, a 7-item anxiety subscale and a 7-item depression subscale [9] HAM-D or HDRS, Hamilton Rating Scale for Depression, 17 items [10] CES-D, Center for Epidemiologic Studies Depression Scale, 20 items [11–14] PHQ-9, Patient Health Questionnaire, 9 items [15] BDI, Beck Depression Inventory, 21 items [17] BDI-13, Beck Depression Inventory, 13 items [18] Montgomery-Asberg Depression Rating Scale—MADRS [19] Zung Self-rating Depression Scale—SDS [20] Delusions Symptoms States Inventory/states of Anxiety and Depression—DSSI/sAD [21] Symptom Check List-90R—SCL-90R [22] Illness Perceptions Questionnaire-Revised—IPQ-R [23] Arthritis Impact Measurement Scales 2—AIMS2 [24] Psychosocial Adjustment to Illness Scale Self-Report Questionnaire—PAIS-SR [25]
Depression is related to clinical features of the disease (Table 2) [26]. In fact, depressive symptoms scores were significantly higher in patients with restrictive lung disease defined as forced vital capacity less than 80 % [35]. Dyspnea has been found also as one of the best predictors of levels of depression [38]. In a model with a group of factors, including demographic, socioeconomic, and global disease, the diseasespecific symptoms (swollen joints, gastrointestinal, and respiratory symptoms) were the major predictors of depression [11]. There is also a tendency about patients in stage 3 of disease (the most severe) for score higher. Depression has also been associated with symptoms of fatigue [47] and the perception of disease activity by the patient [14]. According to some studies, it seems that there is a relationship between depressed patients and digital ulcers [28, 29]. Nietert et al. [49] founded that high levels of depression were associated with gastrointestinal dysfunction, and other study found that high depressive symptoms was strongly associated with esophageal problems [50]. A recent study [40] showed a correlation between depressive symptoms and digestive problems such as reflux and constipation. Other somatic symptoms (bothered, appetite, effort, and sleep) have been expressed related to depression [11]. Sleep disturbances also appear related to depression levels [51, 52]. Visible involvement of personal appearance can be a stressor that facilitates the emergence of negative emotions. In the study of Benrud-Larson et al., depression scores correlated with the satisfaction with personal
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appearance scale—SWAP [53, 54]. Association has been found between depression and the fear of progression as well as appearance self-esteem [55]. Other study investigated the importance of self-esteem related to physical appearance, showing no differences in negative affect for different subgroups of SSc (diffuse and limited), although there was a significant correlation between self-esteem on physical appearance and negative affect, denoting that SSc patients with low self-esteem related to physical appearance had higher levels of negative affect [56]. Some sociodemographic characteristics of patients with SSc have been found also related to depression. The influence of age is not very clear, since younger patients and patients diagnosed at early ages had significantly more severe symptoms in the subscale of cognitive–affective depressive symptoms [28]; moreover, in other study, older age was associated [41]. Otherwise, depression symptoms have been associated with female gender [41]. Also higher levels of depression were displayed in patients who have children [35] and low educational level [36]. Depression scores correlated with the ability to work and social function in other study [22], and the study of Benrud-Larson
Table 2 Factors associated with depression in scleroderma Demographic factors Female patients Diagnosed at early ages Patients who have children Low educational level Ability to work and social function Psychosocial factors Helplessness Pain and disability Personality Stressful life events Social support Coping strategies Weakness in arms or legs Joint swelling Other problems related to musculoskeletal diseases Disease factors Respiratory problems (dyspnea) Gastrointestinal problems (reflux, constipation) Swollen joints Fatigue Digital ulcers Physical appearance Treatment factors Outpatient treatment Corticosteroid
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et al. [29] confirmed that depression is the most important predictor of social adjustment. Some other psychological factors also are associated. High levels of learned helplessness and low scores on the scale of sense of coherence—SOC [57] were also associated with high levels of depression [30]. Self-efficacy also has been found related to depression [58]. Depression scores also correlated with the scale of psychological adjustment to illness [28, 32], which includes several dimensions (home task, sexual, vocational environment, medical care guidance, and social support). Pain and disability are main variables related to negative affect in patients with rheumatic disease. In two studies, the pain was associated with depression [30, 32], and in other, negative emotions were analyzed together (anxiety, depression, and anger) and are also associated with pain [31]. The feedback between depression and disability that exists in other musculoskeletal disorders has also been seen in SSc [59–62]. Depression has been confirmed as one of the predictors for disability [28] or physical function [29]. Depression also has emerged as one of the predictors of quality of life related to health [26]. Disability and pain have been found associated with dyspnea, being the best predictors of depression levels [28]. Quality of life impairment, disability, and pain had significant correlations with depression in the study of Mu¨ller et al. [63]. There are few studies relating the medical treatment of disease with negative emotions of patients, although the study by Danieli et al. [62] measured depressive symptoms in a sample of patients with SSc, find differences between patients in iloprost treatment in day hospital (highest depression) versus outpatient care patients, so regular attendance at the hospital seems to influence negatively on patients. Nietert et al. [49] published that the use of corticosteroids was associated with high levels of depression. Most of the studies about the treatment of depression in SSc agree that it is often underdiagnosed and undertreated. Danieli et al. [62] discussed their perception that depressive symptoms are underestimated by doctors, judging by the low percentage of subjects that were receiving antidepressant medication or psychotherapy. The review of Medsger about the course and evaluation of SSc also emphasizes that depression is often underdiagnosed by physicians [64]. Baubet et al. [43] found that less than 50 % of the patients with mood disorders received psychiatric treatment. According to other survey results, only 21 % of patients with severe depression scores were taking antidepressant medication [65]. Anxiety and SSc Anxiety is a complex concept that means that somebody is excessively or unreasonably worried by something. Also it
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could include a series of symptoms such as tension, palpitations, breathing difficulties, sleep disturbances, restlessness, and other physical symptoms. Several easily administrable self-report questionnaires are available to assess anxiety symptoms [66, 67]. Examples are listed in Table 3. Some of these screening questionnaires can be used to assess anxiety symptoms among other symptoms, while others assess anxiety alone. In some cases, authors use anxiety items as part of assessment of more generic constructs such as mood (AIMS-2), but these questionnaires do not provide anxiety subscales. One problem in measuring anxiety is that some symptoms collected in questionnaires overlap with those of the disease. The prevalence of anxiety symptoms in SSc patients is around 50 % [31, 35, 42, 44], although there are samples with higher percentages, around 80 % [33]. A diagnosis of generalized anxiety disorder according to DSM-IV criteria was given to 25 % of the patients in the study of Mozzetta et al. [38]. Female patients report greater fear and are more likely to have anxiety disorders than men [68]. Anxiety is highly related to clinical features of the disease (Table 4). The study of Merkel et al. [48] found strong associations between high tension level and the presence of digital ulcers, also related in other study [69]. Richards et al. [31] found that negative emotional response was
Table 3 Self-report questionnaires to assist in the assessment of anxiety symptoms in systemic sclerosis HADS, Hospital Anxiety and Depression Scale include a 7-item anxiety subscale and a 7-item depression subscale [9] SCL-90, Symptom Check List includes a 10-item anxiety subscale among other dimensions of emotional symptoms [22] Hamilton Anxiety Rating Scale [66] Delusions Symptoms States Inventory/states of Anxiety and Depression—DSSI/sAD [21] Zung Self-Rating Anxiety Scale [67] Illness Perceptions Questionnaire-Revised—IPQ-R [23] Arthritis Impact Measurement Scales 2 (AIMS2) for tension [24]
Table 4 Factors associated with anxiety in scleroderma Psychosocial factors Pain Personality Low self-esteem related to physical appearance Disease factors Hypertension Digital ulcers Change on personal appearance
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associated with the chronic course of disease, consequences of disease, and symptoms of SSc. Change on personal appearance is, as we discussed earlier, a strong stressor that may predispose to high levels of anxiety in the subject who experiences it. Malcarne et al. [56] investigate the importance of selfesteem related to physical appearance. Their results show no differences in negative emotionality in the different subgroups of SSc (diffuse and limited), and there was a significant association between self-esteem related to physical appearance and negative emotionality, showing that subjects with SSc expressing low self-esteem on physical appearance had higher levels of negative emotionality. Another study on the appearance of SSc found the anxiety correlated strongly with self-esteem on appearance [70]. Hyphantis et al. [50] found that high anxiety symptoms was associated mainly with joint pain and sense of coherence of the subject, a concept that is gaining importance in research in rheumatic diseases [56]. Anxiety symptoms were found to be correlated with other personality variables, as sense of coherence, maladaptive action, and image distorting defense styles. Anger and SSc Anger is a difficult construct including hostility, composed by a State-Anger (measuring how intensely patient experiences anger during either the testing period or a time or situation specified) and a Trait-Anger (measuring an individual’s proneness to experience angry feelings). Table 5 shows the questionnaires used in SSc for measuring anger. The study by Angelopoulos et al. [44] used the Hostility and Direction of Hostility Questionnaire—HDHQ [71] to measure global hostility and various subscales of the spectrum of anger, such as paranoid hostility, self and others criticism, guilt, external or internal punishment or hostility in SSc patients. At all scales of the questionnaire, the patients scored above the average, except in self-criticism, highlight the elevated scores on guilt, external punishment, and global hostility. Richards et al. [31] found that 35 % of the patients associated their illness with symptoms of anger. The negative emotional response was analyzed together (anxiety, depression, and anger) and was associated with pain, chronic course of disease, consequences of disease, and SSc symptoms. In the study of Hyphantis et al. [50] about psychological distress in SSc, which also used HDHQ to measure global hostility, they also found that after developing the disease, the better predictor of psychological distress was the hostility, beyond demographic variables such as age, gender, or education (Table 6).
601 Table 5 Self-report questionnaires to assist in the assessment of anger/hostility symptoms in systemic sclerosis Hostility and Direction of Hostility Questionnaire—HDHQ [71] Illness Perceptions Questionnaire-Revised—IPQ-R [23]
Table 6 Factors associated with anger in scleroderma Psychosocial factors Pain Personality Low self-esteem related to physical appearance Disease factors Hypertension Digital ulcers Change on personal appearance
Discussion There have been very few studies that have evaluated the mood disorders in patients with systemic sclerosis. Moreover, prevalence estimates differ widely, dependent on the classification criteria and assessment methods used. Depression has been, of the three negative emotions that we approach to in this review, the most widely studied in SSc. Usually, there is a high level of comorbidity between anxiety and depressive symptoms. Patients with systemic sclerosis may experience anxiety for two main reasons, because uncertainty about the course and progression of the disease, and due to physical changes. Despite the fact that anger is a common emotion in these diseases is poorly studied, inappropriate expression of anger is a very important problem, especially because it makes the proper adherence to treatment difficult, causes interpersonal conflicts with the patient environment, promotes less adaptive health habits and fragile therapeutic alliance, so the patient does not achieve a mutual cooperation with the therapist, getting into a repetitive cycle of failure and frustration. Summarizing the most relevant findings of this review, the main conclusion is that the negative emotions in these patients are very high, both in relation to the healthy population and in relation to other diseases of similar nature as in the case of rheumatoid arthritis. It appears that the physical symptoms of this disease are very important stressors for the impact in patient quality of life decline. Disease-specific symptoms (swollen joints, gastrointestinal and respiratory symptoms, and digital ulcers) are important predictors of depression. Despite medication, achieving a good control of all symptoms and prolonging survival in these patients is still a slow and difficult task.
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Another stressor that appears as a facilitator of negative emotions in these patients is self-esteem related to appearance. The external physical changes are very visible in SSc and patients need to learn coping strategies that enable them to get accustomed to them. After this review, we collect the overall impression of the authors about the underestimation of these emotions. Also we emphasize the importance of negative emotions that affect these patients, which should be taken into account by doctors and health professionals responsible for these patients, with the aim of treating symptoms as needed and therefore avoid becoming negative factors and symptoms of the disease course. One shortcoming of this study was that the limited number of studies in the review, their heterogeneity, and the use of different measurement instruments and cutoffs did not make suitable for formal meta-analysis, which does not allow us to draw more robust conclusions about negative emotions impact. Diseases with high prevalence and social demand, such as rheumatoid arthritis or fibromyalgia, focusing much of the research, both medical and psychological, but there are other serious rheumatic diseases who are fighting for recognition and to make progress in their treatments and their quality of life, a task in which all health-related professionals should be involved. Our study highlights that negative emotions are an important factor in the SSc. Psychological support should be offered to every patient with SSc to prevent the appearance of these negative emotions, and when they occur, they need to be detected as early as possible to prevent worsening. Furthermore, there are a low percentage of SSc patients who receive an adequate treatment, despite the high frequency of depression and anxiety disorders and the availability of safe and manageable drugs. Psychological and psychiatrist treatment should follow immediately to prevent aggravation or the symptoms becoming chronic. Timely detection of psychosocial difficulties and appropriate psychological or psychiatric intervention may represent important steps toward better adherence to medical treatment and the ultimate outcome of improved quality of life. Interdisciplinary care and biopsychosocial approach would have a great benefit in the clinical management of these patients.
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