Social Work in Health Care
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
Lupus (SLE): Existence and Impact of Depressive Symptomatology Nancy L. Beckerman LCSW, DSW, Charles Auerbach LCSW, PhD, Su Jin Kim LCSW, Jane Salmon MD & Roberta Horton LCSW To cite this article: Nancy L. Beckerman LCSW, DSW, Charles Auerbach LCSW, PhD, Su Jin Kim LCSW, Jane Salmon MD & Roberta Horton LCSW (2015) Lupus (SLE): Existence and Impact of Depressive Symptomatology, Social Work in Health Care, 54:6, 499-517, DOI: 10.1080/00981389.2015.1045575 To link to this article: http://dx.doi.org/10.1080/00981389.2015.1045575
Published online: 17 Jul 2015.
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Date: 18 October 2015, At: 06:33
Social Work in Health Care, 54:499–517, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2015.1045575
Lupus (SLE): Existence and Impact of Depressive Symptomatology NANCY L. BECKERMAN, LCSW, DSW Downloaded by [Mount Allison University 0Libraries] at 06:33 18 October 2015
Social Work, Yeshiva University, New York, New York, USA
CHARLES AUERBACH, LCSW, PhD Wurzweiler School of Social Work, Yeshiva University, New York, New York, USA
SU JIN KIM, LCSW Social Work, Hospital for Special Surgery, New York, New York, USA
JANE SALMON, MD SLE, Hospital for Special Surgery, New York, New York, USA
ROBERTA HORTON, LCSW Social Work, Hospital for Special Surgery, New York, New York, USA
The purpose of this cross-sectional study (N = 84) is to: (1) further identify the unique psychosocial challenges facing those living with Systemic Lupus Erythematosus (SLE) and (2) discern the validity of the depression dimension of the System Lupus Erythematosus Needs Questionnaire (SLENQ) (by including the Beck Depression Inventory [BDI-II]). Utilizing the BDI-II, this study replicates and confirms the validity of studies that employed the SLENQ, establishing that those who have manifested signs of depression in the SLENQ, are equally likely to show signs of depression in the BDI-II. Authors identify and confirm that patients who experience SLE-related depression are significantly more likely to forget taking or stop taking their SLE medications. The authors review relevant research, discuss findings, and provide evidence-based recommendations for social workers providing mental health care to patients living with Lupus.
Received December 3, 2014; accepted April 23, 2015. Address correspondence to Nancy L. Beckerman, LCSW, DSW, Yeshiva University, Wurzweiler School of Social Work, 2495 Amsterdam Avenue, New York, NY 10033. E-mail: [email protected] 499
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KEYWORDS Lupus, psychosocial impact of illness, chronic illness, depression
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INTRODUCTION This article reports on the findings from a cross-sectional quantitative study (N = 84) of how patients living with Systemic Lupus Erythematosus (SLE) experience the psychological impact of this chronic disease, specifically clinical depression. Do SLE-related feelings of depression also present as clinical depression? How might these depressive symptoms impact a patient’s selfcare and subsequently disease course?
Brief Medical Overview of Lupus SLE is a systemic autoimmune disease with a wide range of clinical manifestations. The overall prevalence has recently been reported to be 73 per 100,000 Americans, 90% of whom are women (Lim et al., 2014; Somers et al., 2014). Among African-American women Lupus is more common and reported to occur in 1 of 537 persons, with particularly high incidence and prevalence of SLE between 25 and 55 years of age (Lim et al., 2014; Somers et al., 2014). Studies have reported poorer overall prognosis and greater risks of Lupus renal disease (a significantly complex and challenging medical scenario) among African and Hispanic Americans compared with European Americans (Austin, Boumpas, Vaughan, & Balow, 1995, Danchenko, Satia, & Anthony, 2006). SLE can be mild or severe and can affect major organs and joints. Common symptoms include: fatigue, hair loss, sensitivity to the sun (photosensitivity), painful and swollen joints, unexplained fever, skin rashes and kidney problems (Askanase, Shum, & Mitnick, 2013). SLE is a disease of flares (the symptoms worsen) and remissions (the symptoms improve). That the disease waxes and wanes with no predictable pattern, is a major challenge to patients and health care providers. It is important for SLE mental health care providers to be aware of the potential for emotional states to trigger or amplify responses to a flare; for instance, symptoms may flare because of overworking and not resting enough, as well as on account of psychological and emotional stress (Askanase et al., 2013). Another critical psychosocial dimension of caring for patients with SLE is that those with lower levels of household income and education, or less of a support system, tend to do worse with the disease (Alarcon et al., 1998; Blanco, 2013; Uribe, McGwin, Reveille, & Alarcon, 2004). The typical patient with SLE is a woman in her childbearing years, between the ages of 15 and 44, and a woman of color is two to three times more likely to develop Lupus. Centers for Disease Control and Prevention
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(CDC)–funded studies are ongoing to learn more about epidemiologic data in the United States. Since SLE disproportionally affects women, there are gender-specific issues regarding sexuality, child care, body image, and role strain (Druley, Stephens, & Coyne, 1997; Karasz & Ouellette, 1995; Seawell & Danoff-Burg, 2004). Given the chronicity, acuity, and unpredictability of SLE, patients often experience a high degree of psychological symptoms such as anxiety, depression, and significant decreases in health related quality of life (Auerbach & Beckerman, 2011, 2012; Beckerman, 2011; Danoff-Burg & Friedberg, 2009; Kulczycka, Sysa-Jedrezejowska, & Robak, 2009; Pons-Estel, Alarcón, Scofield, Reinlib, & Cooper, 2010; Trench, McCurdie, White, & D’Cruz, 2000: Wallace, 2008).
LITERATURE REVIEW Chronic Illness and Depression Symptomatology While there has been increasing inquiry into the general psychosocial impact of those living with SLE (Moses, Wiggers, Nicholas, & Cockburn, 2005; Seawell & Danoff-Burg, 2004), this study expands on the existing relevant knowledge by clarifying the nature of the depressive symptoms that have been reported and trying to better understand how depression may impact selfcare, particularly, medication adherence (Beckerman, Auerbach, & Blanco, 2011; Brasilio, 2012; Moses et al., 2005). In order to better understand how depressive states may be experienced in this population, the researchers also included the Beck Depression Inventory (BDI-II) to see if there was depressive symptomatology that emerged on a scale intended to discern clinical levels of depression. Borowoy et al. (2012) studied the manifestations of Neuropsychiatric Lupus (NPSLE) using a variety of classifications that might entail symptoms such as seizure, psychosis, organic brain syndrome, cranial nerve disorder, and cognitive impairment, as well as more minor symptomotalogy such as mild depression, mild cognitive impairment, and electromyogram-negative neuropathies. Of course, depressive symptoms can indicate a wide range of intervening variables and time dimensions, such as SLE patients who may have a preexisting major depressive or persistent depressive disorder that predates the SLE diagnosis, those who have a co-morbid diagnosis of SLE and major or persistent depressive disorder, and those with undiagnosed depressive symptoms that may be in large part, reactive to the emotional weight of living with SLE (APA, 2013). There is growing recognition of the positive correlation between depressive symptomatology and medical chronic illness (Katon, 2003). The ongoing impairments in functioning, chronic pain and discomfort, medical costs, and the psychological impact of illness on patients and families may result in
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depressive states (Maes & Meltzer, 1995). Depression has been shown to have an adverse effect on overall patient self-care (i.e., diet, exercise, healthy lifestyle) and in particular effective medical adherence (Maes & Smith, 1997, 1998). In fact, in the case of illnesses such as diabetes and heart disease, evidence suggests depressive symptoms may be associated with increased morbidity and mortality (Connor & Leonard, 1998; Maes & Maes, 1997). There is no social work study that has looked solely at depressive states and SLE, but there is evidence from medical research which indicates that in otherwise healthy adults, depression is accompanied by a moderate activation of the inflammatory response system, a variable of critical importance in medical care of those with SLE (Maes & Maes, 1997).
SLE and Depressive Symptomatology There is a growing literature regarding the psychological impact of SLE, including two systematic reviews that found high levels of association between Lupus and depression (Meszaros, Perl, & Faraone, 2012; Palagini et al., 2013). The former review found the prevalence of depression in up to 39% of study populations (among 18 studies); the latter at 17–75% (among 17 studies). Among hypotheses offered for this high association, psychosocial factors were shown to be the most frequently reported (Palagini et al., 2013). The current range of social work research and literature indicates that SLE patients are highly vulnerable to co-morbidity of self-reported depressive and anxious feelings (Auerbach & Beckerman, 2011; Beckerman et al., 2011; McElhone, Abbott, & Teh, 2006; Moses et al, 2005; Seawell & Danoff-Burg, 2004). In numerous studies across the health care disciplines, patients affected by the chronic and debilitating symptoms of SLE have reported significant depressive symptoms, and Moses et al. (2005) developed an instrument specifically designed for Lupus patients is the SLE Needs Questionnaire (Moses et al., 2005). The three dimensions of this scale examine socioeconomic coping, anxiety, and depression as they relate to living with SLE (Moses et al., 2005). Beckerman and colleagues (2012) studied a sample of SLE patients (N = 378) from a community-based Lupus organization, employing the SLENQ and the Multidimensional Health Locus of Control (Wallston, Wallston, & Devillis, 1978) and found that the more Lupus patients felt they had some form of control over the disease, the less they needed assistance with feelings of Lupus-related depression and anxiety. Moses and colleagues (2005) developed and employed the SLENQ from a support association in Australia, to ascertain patients’ unmet psychosocial needs. They found that patients had a higher need for help with psychosocial and lifestyle problems than with obtaining information about the disease. The illness itself, unexpected exacerbations, medical regimen side effects, and medical care issues were often identified as the sources of depressed feelings (Moses et al., 2005).
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Philip, Lindner, and Lederman (2009) employed a cross-sectional study (N = 154) to ascertain levels of depression among individuals diagnosed with SLE. The significant findings for this study were that the majority of participants (56%) were classified as moderately or clinically depressed due to the impact of SLE (Philip et al., 2009). Those patients who perceived their illness as negative, and who experienced uncertainty about it, reported higher levels of depression. Similarly, researchers in Poland (Kulczycka et al., 2009, 2010) studied SLE patients and were able to correlate emotional states with the activity and duration of the disease. Of 83 patients, the more recent the past flare-up, the more likely patients were to experience negative emotions and states of depression (Kulczycka et al., 2009). Danoff-Burg and Friedberg (2009) studied the unmet needs of SLE patients (N = 112) and found that the need for assistance about feeling anxious or depressed by their SLE symptoms, was identified by the majority of the sample 78% and 71%, respectively (Kulczycka et al., 2009). The host of symptoms in even a mild scenario (fatigue, joint pain, hair loss, weight gain, and more) has been identified as the direct cause for SLErelated depression and anxiety (Beckerman et al., 2011; Dobkin et al., 2001; Mendelson, 2006; Moses et al., 2005, Seawell & Danoff-Burg, 2004). In fact, there is early evidence that the psychological challenges from the disease manifestations may contribute to higher disease activity, therefore, setting the potential for a troubling template, wherein disease activity creates feelings of depression and anxiety, resulting in poor self-care, which contribute to the risk for the next flare (Pawlak et al., 2003).
SLE and Adherence Within a larger body of literature on chronic disease and medication adherence, there is a growing literature focusing on multifactorial contributors to adherence in SLE and related rheumatologic illnesses (Braden, 1991; Chambers et al., 2008; Duvdevany, Cohen, Minsker-Valtzer, & Lorber, 2011; Harrold & Andrade, 2009; Julian et al., 2009; Koneru et al., 2008; Marengo et al., 2012; Mosley-Williams, Lumley, Gillis, Leisen, & Guice, 2002). Especially relevant to our current study are the findings of Julian et al. (2009) that among their 834 study participants, 46% forgot to take medications at least some of the time, and depressive symptom severity was a strong predictor of adherence difficulties [odds ratio 1.04, 95% confidence interval [95% CI] 1.02–1.05; P < .0001] after accounting for all other predictors. Further, in a longitudinal study cohort of 110 SLE patients, Marengo and colleague’s (2012) study concluded that patients with more depression (p < .02) and a higher number of pills taken daily (p < .02) were more likely to be nonadherent. In a study of adherence of 68 African American and 54 White women with SLE, Mosley-Williams et al. (2002) found differences in the
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types of barriers related to adherence. As with many chronic illnesses, there are complex psychosocial and behavioral reasons for self-reported nonadherence to medications such as sociodemographics, perceptions of medication effectiveness and reported side effects, style of coping, and treatment related experiences (Shaw, Anderson, Maloney, Jay, & Fagan, 1995; Christensen, 2000). Within this very complex interaction between physical symptoms and the existence and impact of depressive symptomatology, the authors aim to better understand the unique psychological experiences of those living with SLE.
METHOD Recruitment and Data Collection The study was approved by the Albert Einstein College of Medicine’s Institutional Review Board (IRB) in New York City and by Hospital for Special Surgery (HSS) in New York City. A convenience sample of 75 patients being treated for Lupus at the HSS Mary Kirkland Center for Lupus Care and in consultive rheumatology practices at HSS was recruited for the study. The sample consisted of patients who were being actively treated for SLE, but had not been identified as having any pre- or co-morbid psychiatric disorders or neuropsychiatric SLE. All patients attending their Lupus appointments during an 18-month period were given a six-page questionnaire about their psychosocial experiences while living with SLE. Patients were invited to complete an anonymous survey, written at an eighth-grade level, designed to ascertain the unique psychosocial challenges for those living with SLE. An informed consent letter was given to participants with each survey that explained the purpose of the study as well its voluntary nature. The consent also explained that participants could discontinue without any penalty. Finally, they were informed that information would only be used in the aggregate with no identifying data reported. The consent included a statement offering emotional support by trained personnel should any respondent experience undue emotional distress from completing the survey. There were inherent limitations to the study regarding accuracy and generalizability. As always, in a survey questionnaire there is the possibility that patient recall is distorted or emotional state of patient in that date and time can skew responses. The data also reflects more minorities and lower SES and that too, should be considered when reviewing the results.
Instrument The survey instrument consisted of two components. Part 1 included sociodemographic variables such as gender, race, age, and time of diagnosis,
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length of time since diagnosis, education, employment, and relationship status. Part 2 consisted of the Systemic Lupus Erythematous Needs Questionnaire (SLENQ) (Moses et al., 2005), which was developed from the results of a literature review of psychosocial issues associated with having Lupus by Moses et al. (2005). Participants were requested to respond to their level of psychosocial needs (SLENQ) on a five-point scale (with 1 = no need, 3 = moderate need, and 5 = high need) for twelve different psychosocial factors. For the purpose of analysis, three subscales were created from the psychosocial need items: depression, anxiety, and social economic coping (SEC). Depression was measured using the following three items: (1) feeling depressed due to limitations caused by Lupus, (2) feeling depressed because of changes in your body, and (3) feeling depressed because of side effects. Anxiety was measured using the following six items: (1) feeling confused about why this disease happened to you, (2) feeling angry about having Lupus, (3) feeling uncertain about the future, (4) dealing with anxiety about their illness, (5) anxiety about side effects, and (6) changes in appearance. SEC was measured using the following three items: (1) concerns about gaining employment, (2) satisfactory performance in job, and (3) coping with extra costs (Auerbach & Beckerman, 2011). The scales had the following overall means: depression, 3.3 (SD = 1.4); anxiety, 3.4 (SD = 1.4); and SEC, 2.8 (SD = 1.4). Internal reliability of the subscales was respectable for depression (α = 0.97), anxiety (α = 0.94), and SEC (α = 0.85). These results are consistent with a previous study where the following coefficients were obtained, with coefficient alphas of 0.91 for depression, 0.90 for anxiety, and 0.76 for SEC (Auerbach & Beckerman, 2012; Beckerman, Auerbach, & Blanco, 2011. Although there are no absolute standards on how high a coefficient α should be to consider a scale reliable, the following cutoff values were used in the current research: α = 0.90 is considered excellent, α = 0.80 is considered very good, and α = 0.70 considered adequate (Kline, 2005). Based on this, the Cronbach’s α coefficients for the final model were in the adequate to excellent range. The BDI-II was included as another test of validity. The a for the BDI was .93 indicating strong internal reliability. The BDI-II had a moderately strong correlation with depression and anxiety. The Pearson’s r coefficients were .57 for depression and .59 for anxiety. The SLENQ was specifically designed to measure psychosocial functioning of SLE patients while the BDI-II was designed to measure depression in the general population. This finding provides further evidence of the validity of the SLENQ in that it is measuring the correct psychosocial symptoms of depression and anxiety. The SEC scale, on the other hand, had a lower Pearson’s r coefficient of .38.
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Psychometrics of the SLE Needs Questionnaire In previous research, the SLE needs questionnaire was utilized with a sample of 378 SLE patients in the community (Beckerman et al., 2011). No statistical differences were found between that sample and the current sample on levels of depression and anxiety. In a previous study, high coefficients (0.50) in a structural equation model (SEM) indicated the presence of construct validity (Auerbach & Beckerman, 2011). Also the standard errors in that study were small—ranging from 0.02 to 0.05, reflecting the stability of the indicators. Discriminant validity involves the relationship between factors and is established by correlations between the factors of less than 0.85. The correlations among depression, SEC, and anxiety were all less than 0.80 (depression with SEC = 0.33; depression with anxiety = 0.79; SEC with anxiety = 0.41). Furthermore, the absolute correlations between the three scales were not greater than 1, indicating that the scales are statistically distinguishable (Auerbach & Beckerman, 2011).
Data Analysis The survey data were entered into STATA 12.1 (StataCorp, 2011) and analyzed for frequencies. Also, t-tests were conducted between sociodemographic variables and responses from the Likert scale questions of the SLENQ. With regard to missing data, a caveat must be noted: some participants did not respond to every question, so some items were tabulated with less than the total number of respondents. Furthermore, respondents could provide multiple responses for some items. Therefore, any single item’s responses may not total 100%.
RESULTS Sample Characteristics Demographics of the sample are displayed in Table 1. The vast majority of the participants were women (88.2%, n = 84), 10.5%, (n = 8) were men, and 1.3% was transgender (n = 1). Participants ranged in age from early 20s to 60, with slightly more than half under 36 (51%, n = 39), almost a quarter were between 36–45 years of age (22%, n = 17), and a quarter, were aged 46 or older (26%, n = 20). African Americans represented the largest racial group (46%, n = 34). Another 35% (n = 34) were Hispanic, 7% were Asian (5), 5% (n = 4) were White, and 7% identified as some other race. These sample characteristics are representative of previous social work studies of this population (Beckerman et al., 2011; Moses et al., 2005). More than half of the respondents (67%, n = 49); were never married; 18% (n = 13) were married or living with a domestic partner. One-third (25%, n = 28)
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Lupus (SLE) TABLE 1 Demographics
Gender
Race
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Age
Education level
Employment
Insurance
Admitted to hospital in past 12 months? How long since DX
Male Female Transgender Hispanic African American Asian White Other Under 21 21–35 36–45 46–60 High school or less Some college College grad Advanced degree Part time Full time Unemployed On disability Medicaid Medicare Private insurance None Yes No Within past year Three years ago Five years ago More than five years ago
%
N
10.5 88.2 1.3 35.1 45.9 6.8 5.4 6.8 6.6 44.7 22.4 26.3 33.3 33.3 28.0 5.3 13.3 9.3 33.3 44.0 71.9 8.8 11.8 1.5 31.8 68.2 14.5 11.5 3.3 70.5
8 67 1 26 34 5 4 5 5 34 17 20 25 25 21 4 10 7 25 33 53 6 8 1 20 43 9 7 7 43
of the respondents had at least some college education, and another third (n = 21) had an undergraduate or advanced college degree. A large proportion of the sample received disability for complications due to SLE (44%, n = 33), whereas 9% (n = 7) were working full time, 13% were working part time (n = 10), and a third were unemployed (n = 25). Loss of employment is a key finding and concurs with numerous studies that see loss of household income and work as a significant precursor to depressive states in SLE patients (Jolly, Mikolaitis, Shakoor, Fogg, & Block, 2010; Strand et al., 2013). Most of the respondents (74%, n = 45) were diagnosed with SLE more than five years ago; only 15% (n = 9) were diagnosed within the past year. In the past 12 months, almost one-third (32%, n = 20)) of the respondents were hospitalized because of complications from SLE. Respondents’ most frequent type of medical coverage was Medicaid (72%, n = 53), followed by private insurance (12%, n = 8), and Medicare (9%, n = 6). The majority of
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respondents’ primary source of medical care was provided by a clinic (78%, n = 43), followed by a private physician (20%, n = 11). More than half (56%, n = 31) of respondents indicated that their SLE was marked by a chronic set of symptoms. Another 24% (n = 13) reported having frequent flares, and 20% (n = 11) reported having infrequent flares. Joint aches, fatigue, and muscle pain were present for two-thirds or more of the respondents (n = 51).
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Factors that Impact Psychosocial Functioning For depression, participants experiencing fatigue rated their psychosocial need as 3.6 as compared with those not experiencing fatigue, who rated their need as 2.2 (t = 4.1, p = 0.00; df = 6). A similar pattern existed for anxiety where respondents experiencing fatigue had an average need of 3.4 compared to 2.2 for those who did not experience this (t = 3.9, p = .00, df = 62). Individuals experiencing hair loss also rated their level of need higher with a mean of 3.4 compared to 2.6 for those who did not experience hair loss (t = 2.4, p = .02, df = 62). For anxiety, respondents with frequent flares on average rated their psychosocial need as 3.6 compared to those with infrequent or chronic flare-ups, who rated their needs as 2.2 and 3.0, respectively (f = 3.9. p = 0.03, df = 54). These findings concur with previous research conducted in the area of Lupus (Auerbach & Beckerman, 2011, 2012; Seawell & Danoff-Burg, 2004). For depression, respondents hospitalized during the year rated their psychosocial need higher with a mean of 3.6 compared to 2.8 for those not hospitalized (t = 2.0, p = .05 df = 61). The results were similar but not significant for anxiety where those hospitalized on average rated their psychosocial need as 3.4 compared to 2.7 for those not hospitalized (t = 2.9, p = .07, df = 61). For SLE-related depression, respondents experiencing severe depression as measured by the BDI-II, on average rated their psychosocial need as 4.0 as compared with those not experiencing severe depression, who rated their need as 2.6 (t = 3.7, p = 0.00; df = 62). A similar pattern existed for anxiety where respondents experiencing severe depression, as measured by the BDIII, had an average psychosocial need of 3.8 compared to 2.5 for those who did not experience this (t = 4.2, p = .00, df = 62).
Factors That Impact Clinical Depression For the BDI-II, 46.2% of patients who were experiencing fatigue were also clinically depressed as compared to 8.1% who were not experiencing fatigue (Fisher’s exact = .000). No demographic characteristic was found to be associated to BDI clinical depression.
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Lupus (SLE) TABLE 2 Logistic Regression (N = 64) Dependent variable
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Beck Depression Inventory LR X2 = 12.4; p = .000 Beck Depression Inventory LR X2 = 15.1; p = .000 Beck Depression Inventory LR X2 = 4.4; p = .037
Independent variable
Odds ratio
95% CI
z
P
SLE Depression
1.9
1.3–3.0
3.1
.002
SLE Anxiety
2.4
1.4–3.9
3.4
.001
SLE Social economic Coping
1.4
1.0–2.1
2.0
.041
Logistic regression was utilized to test for the degree to which Lupusrelated depression, SLE-related anxiety, and social economic coping are related to BDI clinical depression. Because of co-linearity, each of the SLE sub-scales was tested separately. The odds ratios in this analysis are presented in Table 2. An odds ratio of 1 would indicate that the independent variable makes no difference with regard to the outcome. For example, if the odds ratio for SLE depression were 1, then a patient’s score on SLE depression would not increase the odds a patient, as measured by the BDI, was clinically depressed. An odds of 2 would suggest that a one unit increase in SLE depression increases the odds of clinical depression by 100%. For SLE-related depression, an odds ratio (OR) of 1.9 indicates a one unit increase in Lupus depression; the odds of clinical depression doubles. For SLE anxiety, the odds of clinical depression increased 1.5 times with a one-point increase on the SLE anxiety scale. For SLE economic coping, there was almost a 50% increase in the likelihood of clinical depression with a one-unit increase on this scale.
Medication Adherence As Table 3 displays, 65% (n = 39) of the respondents forget to take their medication. Close to 40% (n = 24) of the respondents indicated they are careless with their medication. A third indicated they stop taking their TABLE 3 Medication Compliance
Do you ever forget to take your medicine? Are you careless at times about taking your medicines? When you feel better, do you sometimes stop taking your medicine? Sometimes if you feel worse when you take the medicine, do you stop taking it?
%
n
Yes No Yes No Yes No Yes
65.0 35.0 39.3 60.7 33.9 66.1 34.4
39 21 24 37 20 39 40
No
65.6
21
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medication when they feel better. Finally, a little over a third who feels worse after taking their medication stops taking it. Although not statistically significant, 80% (n = 16) of those who, based on the BDI-II, are clinically depressed, forget to take their medication as compared to 57% (n = 23) who are not clinically depressed (Fisher’s exact = .07). An odds ratio of 3.0 (95% CI = .83 to 10.4) indicates that clinically depressed respondents odds are three times more likely to forget to take their medication than those who are depressed. More than half (55%, n = 11) of those clinically depressed indicate that if they feel worse when taking their medication, they stop taking it, as compared to 24% (n = 10) of those not clinically depressed (Fisher’s exact = .024). An odds ratio of 3.8 (p = .021; 95% CI = 1.2 to 11.8) indicates that respondents who are clinically depressed are almost four times more likely to stop taking their medication when they feel worse, compared to those who are not depressed.
Key Findings Summary ●
BDI-II confirms the SLENQ scale (Moses et al., 2005) is an accurate tool for discerning the presence of depressive symptomatology. ● Regarding medication adherence, patients who experience depression are more likely to forget taking their medications, and are more likely to stop taking their medications if they feel worse as a result.
DISCUSSION This study supports previous research that used the SLENQ and found depressive states as a common occurrence for patients living with Lupus (Beckerman et al., 2011; Moses et al., 2005). It is important to note that some of the depression may be preexisting to SLE. Some of it may be a reactive depression as one adjusts to living with this disease. For others, this may capture a chronic depressive state that is directly interlocked with the course of their SLE disease and treatment side-effects. Whether these depressive symptoms pre-date the diagnosis or are temporary or pervasive, it is essential for health care providers to understand the complicated dialectical relationship between depressive symptomatology and self-care. Learning that the greater the depressive symptoms, the more likely patients are to discontinue their medication regimens (either by forgetfulness or discouragement) provides evidence that depression can and does lead to poor medication adherence in SLE as it does in other chronic medical illnesses (DiMatteo, Lepper, & Croghan, 2000; Shaw et al., 1995).
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While this study supports the findings of Phillip et al. (2009), as well as those of Moses et al. (2005) and Beckerman et al. (2011), it also further elucidates the direct impact depression can have on Lupus self-care. Therefore, in screening, assessing, or counseling a new or current patient, social workers should always screen for major or persistent depression or dysthymia and its potential impact on self-care. Whether screening is done with the SLENQ, the BDI, or via self-reports, it now appears essential to formalize a calculated assessment to ascertain a patient’s level of depressive symptomatology. Should significant indications for depression (via SLENQ or BDI-II, or other standardized and well validated tools) be identified in an individual with SLE, a risk assessment, and further screening of patients’ adaptation and coping, family and environmental resources, is indicated, and a provision for individual counseling by the hospital social worker, other mental health professional, or a community referral be made. Psychoeducational groups with peers who share the same illness can also allow for the provision of educational tools and resources, as well as exploration and expression of depressive feelings to provide a shared space to problem solve. Further, several studies (Karlson, Liang, & Eaton et al., 2004; Kozora, Ellison, Waxmonsky, Wamboldt, & Patterson, 2005; Ng & Chan, 2007) have demonstrated that such interventions can improve modifiable risk factors and SLE outcomes, including couples communication, self-efficacy, mental health status, psychological well-being, and fatigue. An evidence-based Chronic Disease Self-Management Program (CDSMP) used throughout the world was developed, as well as an earlier Arthritis SelfManagement Program, which has also been adapted for Lupus (Braden, 1991). The intervention relies on a manualized educational intervention, emphasizing mutual support. Results have indicated improvement on a number of psychosocial metrics. William, Penfield, Kamen, and Oates (2014) in their Balancing Lupus Experiences with Stress Strategies Study (BLESS), demonstrated that participating in multisession workshops based on the CDSMP, yielded a clinical significant improvement in depression, using the BDI-II (d = 1.63 and d = 1.68), as well as several other indicators of stress. Drenkard and colleagues (2012) utilized the CDSMP with low-income African Americans with Lupus, with significant improvements in several self-management behaviors, including adherence. Individual interventions utilizing trained peers with Lupus have also proven effective. In a study of 153 users of LupusLine® a social work led national telephone peer counseling service, decreases in feelings of Lupus-related depression, isolation, anxiety, and increases in coping and feeling more in control resulted with >93% attributing these changes to LupusLine service utilization (Horton, Peterson, Powell, Engelhard, & Paget, 1997). These evidence-based interventions may be readily adapted by social workers and other health professionals working in collaboration with
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colleagues and Lupus patient partners. Clinical initiatives and program development should emphasize patient education and advocacy as it has been found to be a mitigating factor in both depression and anxiety for women living with Lupus (Beckerman & Sarracco, 2012). Culturally tailored interventions for diverse and medically underserved communities should be assessed and addressed (Doran et al., 2003; Drenkard et al., 2012; Feldman et al., 2013; Fernandez et al., 2009; Rose, Doran, Horton, Flics, & Paget, 2006; Sandoval, Mendez, Horton, Isgro, & Rose, 2013; Tran, Horton, Yee, & Paget, 2009; Williams et al., 2014). In addition to individual and group psychoeducational interventions and support, those persons with SLE who are suffering from a previously undiagnosed and untreated major depression can be referred for a psychopharmacology consultation (Ng & Chan, 2007). By working in close collaboration with the health care team to establish routine protocols for careful screening, identification, and intervention for depressive symptoms, we may be able to interrupt the potential for a negative cycle wherein illness activity and impact contributes to depression, which in turn interferes with optimal self-care and optimal health outcomes (Karlson et al., 2004).
CONCLUSION It is critical to build on the established knowledge of depression in SLE and its’ relationship to medication adherence. The literature has suggested that further research is needed to identify potential biomarkers for depression and Lupus, as well as the specific sources of psychosocial contributors to depression, which may be multidetermined. Future research should continue to try to identify which forms of psychosocial interventions appear most effective for which types of SLE-related challenges.
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ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
Lupus (SLE): Existence and Impact of Depressive Symptomatology Nancy L. Beckerman LCSW, DSW, Charles Auerbach LCSW, PhD, Su Jin Kim LCSW, Jane Salmon MD & Roberta Horton LCSW To cite this article: Nancy L. Beckerman LCSW, DSW, Charles Auerbach LCSW, PhD, Su Jin Kim LCSW, Jane Salmon MD & Roberta Horton LCSW (2015) Lupus (SLE): Existence and Impact of Depressive Symptomatology, Social Work in Health Care, 54:6, 499-517, DOI: 10.1080/00981389.2015.1045575 To link to this article: http://dx.doi.org/10.1080/00981389.2015.1045575
Published online: 17 Jul 2015.
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Social Work in Health Care, 54:499–517, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2015.1045575
Lupus (SLE): Existence and Impact of Depressive Symptomatology NANCY L. BECKERMAN, LCSW, DSW Downloaded by [Mount Allison University 0Libraries] at 06:33 18 October 2015
Social Work, Yeshiva University, New York, New York, USA
CHARLES AUERBACH, LCSW, PhD Wurzweiler School of Social Work, Yeshiva University, New York, New York, USA
SU JIN KIM, LCSW Social Work, Hospital for Special Surgery, New York, New York, USA
JANE SALMON, MD SLE, Hospital for Special Surgery, New York, New York, USA
ROBERTA HORTON, LCSW Social Work, Hospital for Special Surgery, New York, New York, USA
The purpose of this cross-sectional study (N = 84) is to: (1) further identify the unique psychosocial challenges facing those living with Systemic Lupus Erythematosus (SLE) and (2) discern the validity of the depression dimension of the System Lupus Erythematosus Needs Questionnaire (SLENQ) (by including the Beck Depression Inventory [BDI-II]). Utilizing the BDI-II, this study replicates and confirms the validity of studies that employed the SLENQ, establishing that those who have manifested signs of depression in the SLENQ, are equally likely to show signs of depression in the BDI-II. Authors identify and confirm that patients who experience SLE-related depression are significantly more likely to forget taking or stop taking their SLE medications. The authors review relevant research, discuss findings, and provide evidence-based recommendations for social workers providing mental health care to patients living with Lupus.
Received December 3, 2014; accepted April 23, 2015. Address correspondence to Nancy L. Beckerman, LCSW, DSW, Yeshiva University, Wurzweiler School of Social Work, 2495 Amsterdam Avenue, New York, NY 10033. E-mail: [email protected] 499
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KEYWORDS Lupus, psychosocial impact of illness, chronic illness, depression
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INTRODUCTION This article reports on the findings from a cross-sectional quantitative study (N = 84) of how patients living with Systemic Lupus Erythematosus (SLE) experience the psychological impact of this chronic disease, specifically clinical depression. Do SLE-related feelings of depression also present as clinical depression? How might these depressive symptoms impact a patient’s selfcare and subsequently disease course?
Brief Medical Overview of Lupus SLE is a systemic autoimmune disease with a wide range of clinical manifestations. The overall prevalence has recently been reported to be 73 per 100,000 Americans, 90% of whom are women (Lim et al., 2014; Somers et al., 2014). Among African-American women Lupus is more common and reported to occur in 1 of 537 persons, with particularly high incidence and prevalence of SLE between 25 and 55 years of age (Lim et al., 2014; Somers et al., 2014). Studies have reported poorer overall prognosis and greater risks of Lupus renal disease (a significantly complex and challenging medical scenario) among African and Hispanic Americans compared with European Americans (Austin, Boumpas, Vaughan, & Balow, 1995, Danchenko, Satia, & Anthony, 2006). SLE can be mild or severe and can affect major organs and joints. Common symptoms include: fatigue, hair loss, sensitivity to the sun (photosensitivity), painful and swollen joints, unexplained fever, skin rashes and kidney problems (Askanase, Shum, & Mitnick, 2013). SLE is a disease of flares (the symptoms worsen) and remissions (the symptoms improve). That the disease waxes and wanes with no predictable pattern, is a major challenge to patients and health care providers. It is important for SLE mental health care providers to be aware of the potential for emotional states to trigger or amplify responses to a flare; for instance, symptoms may flare because of overworking and not resting enough, as well as on account of psychological and emotional stress (Askanase et al., 2013). Another critical psychosocial dimension of caring for patients with SLE is that those with lower levels of household income and education, or less of a support system, tend to do worse with the disease (Alarcon et al., 1998; Blanco, 2013; Uribe, McGwin, Reveille, & Alarcon, 2004). The typical patient with SLE is a woman in her childbearing years, between the ages of 15 and 44, and a woman of color is two to three times more likely to develop Lupus. Centers for Disease Control and Prevention
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(CDC)–funded studies are ongoing to learn more about epidemiologic data in the United States. Since SLE disproportionally affects women, there are gender-specific issues regarding sexuality, child care, body image, and role strain (Druley, Stephens, & Coyne, 1997; Karasz & Ouellette, 1995; Seawell & Danoff-Burg, 2004). Given the chronicity, acuity, and unpredictability of SLE, patients often experience a high degree of psychological symptoms such as anxiety, depression, and significant decreases in health related quality of life (Auerbach & Beckerman, 2011, 2012; Beckerman, 2011; Danoff-Burg & Friedberg, 2009; Kulczycka, Sysa-Jedrezejowska, & Robak, 2009; Pons-Estel, Alarcón, Scofield, Reinlib, & Cooper, 2010; Trench, McCurdie, White, & D’Cruz, 2000: Wallace, 2008).
LITERATURE REVIEW Chronic Illness and Depression Symptomatology While there has been increasing inquiry into the general psychosocial impact of those living with SLE (Moses, Wiggers, Nicholas, & Cockburn, 2005; Seawell & Danoff-Burg, 2004), this study expands on the existing relevant knowledge by clarifying the nature of the depressive symptoms that have been reported and trying to better understand how depression may impact selfcare, particularly, medication adherence (Beckerman, Auerbach, & Blanco, 2011; Brasilio, 2012; Moses et al., 2005). In order to better understand how depressive states may be experienced in this population, the researchers also included the Beck Depression Inventory (BDI-II) to see if there was depressive symptomatology that emerged on a scale intended to discern clinical levels of depression. Borowoy et al. (2012) studied the manifestations of Neuropsychiatric Lupus (NPSLE) using a variety of classifications that might entail symptoms such as seizure, psychosis, organic brain syndrome, cranial nerve disorder, and cognitive impairment, as well as more minor symptomotalogy such as mild depression, mild cognitive impairment, and electromyogram-negative neuropathies. Of course, depressive symptoms can indicate a wide range of intervening variables and time dimensions, such as SLE patients who may have a preexisting major depressive or persistent depressive disorder that predates the SLE diagnosis, those who have a co-morbid diagnosis of SLE and major or persistent depressive disorder, and those with undiagnosed depressive symptoms that may be in large part, reactive to the emotional weight of living with SLE (APA, 2013). There is growing recognition of the positive correlation between depressive symptomatology and medical chronic illness (Katon, 2003). The ongoing impairments in functioning, chronic pain and discomfort, medical costs, and the psychological impact of illness on patients and families may result in
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depressive states (Maes & Meltzer, 1995). Depression has been shown to have an adverse effect on overall patient self-care (i.e., diet, exercise, healthy lifestyle) and in particular effective medical adherence (Maes & Smith, 1997, 1998). In fact, in the case of illnesses such as diabetes and heart disease, evidence suggests depressive symptoms may be associated with increased morbidity and mortality (Connor & Leonard, 1998; Maes & Maes, 1997). There is no social work study that has looked solely at depressive states and SLE, but there is evidence from medical research which indicates that in otherwise healthy adults, depression is accompanied by a moderate activation of the inflammatory response system, a variable of critical importance in medical care of those with SLE (Maes & Maes, 1997).
SLE and Depressive Symptomatology There is a growing literature regarding the psychological impact of SLE, including two systematic reviews that found high levels of association between Lupus and depression (Meszaros, Perl, & Faraone, 2012; Palagini et al., 2013). The former review found the prevalence of depression in up to 39% of study populations (among 18 studies); the latter at 17–75% (among 17 studies). Among hypotheses offered for this high association, psychosocial factors were shown to be the most frequently reported (Palagini et al., 2013). The current range of social work research and literature indicates that SLE patients are highly vulnerable to co-morbidity of self-reported depressive and anxious feelings (Auerbach & Beckerman, 2011; Beckerman et al., 2011; McElhone, Abbott, & Teh, 2006; Moses et al, 2005; Seawell & Danoff-Burg, 2004). In numerous studies across the health care disciplines, patients affected by the chronic and debilitating symptoms of SLE have reported significant depressive symptoms, and Moses et al. (2005) developed an instrument specifically designed for Lupus patients is the SLE Needs Questionnaire (Moses et al., 2005). The three dimensions of this scale examine socioeconomic coping, anxiety, and depression as they relate to living with SLE (Moses et al., 2005). Beckerman and colleagues (2012) studied a sample of SLE patients (N = 378) from a community-based Lupus organization, employing the SLENQ and the Multidimensional Health Locus of Control (Wallston, Wallston, & Devillis, 1978) and found that the more Lupus patients felt they had some form of control over the disease, the less they needed assistance with feelings of Lupus-related depression and anxiety. Moses and colleagues (2005) developed and employed the SLENQ from a support association in Australia, to ascertain patients’ unmet psychosocial needs. They found that patients had a higher need for help with psychosocial and lifestyle problems than with obtaining information about the disease. The illness itself, unexpected exacerbations, medical regimen side effects, and medical care issues were often identified as the sources of depressed feelings (Moses et al., 2005).
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Philip, Lindner, and Lederman (2009) employed a cross-sectional study (N = 154) to ascertain levels of depression among individuals diagnosed with SLE. The significant findings for this study were that the majority of participants (56%) were classified as moderately or clinically depressed due to the impact of SLE (Philip et al., 2009). Those patients who perceived their illness as negative, and who experienced uncertainty about it, reported higher levels of depression. Similarly, researchers in Poland (Kulczycka et al., 2009, 2010) studied SLE patients and were able to correlate emotional states with the activity and duration of the disease. Of 83 patients, the more recent the past flare-up, the more likely patients were to experience negative emotions and states of depression (Kulczycka et al., 2009). Danoff-Burg and Friedberg (2009) studied the unmet needs of SLE patients (N = 112) and found that the need for assistance about feeling anxious or depressed by their SLE symptoms, was identified by the majority of the sample 78% and 71%, respectively (Kulczycka et al., 2009). The host of symptoms in even a mild scenario (fatigue, joint pain, hair loss, weight gain, and more) has been identified as the direct cause for SLErelated depression and anxiety (Beckerman et al., 2011; Dobkin et al., 2001; Mendelson, 2006; Moses et al., 2005, Seawell & Danoff-Burg, 2004). In fact, there is early evidence that the psychological challenges from the disease manifestations may contribute to higher disease activity, therefore, setting the potential for a troubling template, wherein disease activity creates feelings of depression and anxiety, resulting in poor self-care, which contribute to the risk for the next flare (Pawlak et al., 2003).
SLE and Adherence Within a larger body of literature on chronic disease and medication adherence, there is a growing literature focusing on multifactorial contributors to adherence in SLE and related rheumatologic illnesses (Braden, 1991; Chambers et al., 2008; Duvdevany, Cohen, Minsker-Valtzer, & Lorber, 2011; Harrold & Andrade, 2009; Julian et al., 2009; Koneru et al., 2008; Marengo et al., 2012; Mosley-Williams, Lumley, Gillis, Leisen, & Guice, 2002). Especially relevant to our current study are the findings of Julian et al. (2009) that among their 834 study participants, 46% forgot to take medications at least some of the time, and depressive symptom severity was a strong predictor of adherence difficulties [odds ratio 1.04, 95% confidence interval [95% CI] 1.02–1.05; P < .0001] after accounting for all other predictors. Further, in a longitudinal study cohort of 110 SLE patients, Marengo and colleague’s (2012) study concluded that patients with more depression (p < .02) and a higher number of pills taken daily (p < .02) were more likely to be nonadherent. In a study of adherence of 68 African American and 54 White women with SLE, Mosley-Williams et al. (2002) found differences in the
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types of barriers related to adherence. As with many chronic illnesses, there are complex psychosocial and behavioral reasons for self-reported nonadherence to medications such as sociodemographics, perceptions of medication effectiveness and reported side effects, style of coping, and treatment related experiences (Shaw, Anderson, Maloney, Jay, & Fagan, 1995; Christensen, 2000). Within this very complex interaction between physical symptoms and the existence and impact of depressive symptomatology, the authors aim to better understand the unique psychological experiences of those living with SLE.
METHOD Recruitment and Data Collection The study was approved by the Albert Einstein College of Medicine’s Institutional Review Board (IRB) in New York City and by Hospital for Special Surgery (HSS) in New York City. A convenience sample of 75 patients being treated for Lupus at the HSS Mary Kirkland Center for Lupus Care and in consultive rheumatology practices at HSS was recruited for the study. The sample consisted of patients who were being actively treated for SLE, but had not been identified as having any pre- or co-morbid psychiatric disorders or neuropsychiatric SLE. All patients attending their Lupus appointments during an 18-month period were given a six-page questionnaire about their psychosocial experiences while living with SLE. Patients were invited to complete an anonymous survey, written at an eighth-grade level, designed to ascertain the unique psychosocial challenges for those living with SLE. An informed consent letter was given to participants with each survey that explained the purpose of the study as well its voluntary nature. The consent also explained that participants could discontinue without any penalty. Finally, they were informed that information would only be used in the aggregate with no identifying data reported. The consent included a statement offering emotional support by trained personnel should any respondent experience undue emotional distress from completing the survey. There were inherent limitations to the study regarding accuracy and generalizability. As always, in a survey questionnaire there is the possibility that patient recall is distorted or emotional state of patient in that date and time can skew responses. The data also reflects more minorities and lower SES and that too, should be considered when reviewing the results.
Instrument The survey instrument consisted of two components. Part 1 included sociodemographic variables such as gender, race, age, and time of diagnosis,
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length of time since diagnosis, education, employment, and relationship status. Part 2 consisted of the Systemic Lupus Erythematous Needs Questionnaire (SLENQ) (Moses et al., 2005), which was developed from the results of a literature review of psychosocial issues associated with having Lupus by Moses et al. (2005). Participants were requested to respond to their level of psychosocial needs (SLENQ) on a five-point scale (with 1 = no need, 3 = moderate need, and 5 = high need) for twelve different psychosocial factors. For the purpose of analysis, three subscales were created from the psychosocial need items: depression, anxiety, and social economic coping (SEC). Depression was measured using the following three items: (1) feeling depressed due to limitations caused by Lupus, (2) feeling depressed because of changes in your body, and (3) feeling depressed because of side effects. Anxiety was measured using the following six items: (1) feeling confused about why this disease happened to you, (2) feeling angry about having Lupus, (3) feeling uncertain about the future, (4) dealing with anxiety about their illness, (5) anxiety about side effects, and (6) changes in appearance. SEC was measured using the following three items: (1) concerns about gaining employment, (2) satisfactory performance in job, and (3) coping with extra costs (Auerbach & Beckerman, 2011). The scales had the following overall means: depression, 3.3 (SD = 1.4); anxiety, 3.4 (SD = 1.4); and SEC, 2.8 (SD = 1.4). Internal reliability of the subscales was respectable for depression (α = 0.97), anxiety (α = 0.94), and SEC (α = 0.85). These results are consistent with a previous study where the following coefficients were obtained, with coefficient alphas of 0.91 for depression, 0.90 for anxiety, and 0.76 for SEC (Auerbach & Beckerman, 2012; Beckerman, Auerbach, & Blanco, 2011. Although there are no absolute standards on how high a coefficient α should be to consider a scale reliable, the following cutoff values were used in the current research: α = 0.90 is considered excellent, α = 0.80 is considered very good, and α = 0.70 considered adequate (Kline, 2005). Based on this, the Cronbach’s α coefficients for the final model were in the adequate to excellent range. The BDI-II was included as another test of validity. The a for the BDI was .93 indicating strong internal reliability. The BDI-II had a moderately strong correlation with depression and anxiety. The Pearson’s r coefficients were .57 for depression and .59 for anxiety. The SLENQ was specifically designed to measure psychosocial functioning of SLE patients while the BDI-II was designed to measure depression in the general population. This finding provides further evidence of the validity of the SLENQ in that it is measuring the correct psychosocial symptoms of depression and anxiety. The SEC scale, on the other hand, had a lower Pearson’s r coefficient of .38.
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Psychometrics of the SLE Needs Questionnaire In previous research, the SLE needs questionnaire was utilized with a sample of 378 SLE patients in the community (Beckerman et al., 2011). No statistical differences were found between that sample and the current sample on levels of depression and anxiety. In a previous study, high coefficients (0.50) in a structural equation model (SEM) indicated the presence of construct validity (Auerbach & Beckerman, 2011). Also the standard errors in that study were small—ranging from 0.02 to 0.05, reflecting the stability of the indicators. Discriminant validity involves the relationship between factors and is established by correlations between the factors of less than 0.85. The correlations among depression, SEC, and anxiety were all less than 0.80 (depression with SEC = 0.33; depression with anxiety = 0.79; SEC with anxiety = 0.41). Furthermore, the absolute correlations between the three scales were not greater than 1, indicating that the scales are statistically distinguishable (Auerbach & Beckerman, 2011).
Data Analysis The survey data were entered into STATA 12.1 (StataCorp, 2011) and analyzed for frequencies. Also, t-tests were conducted between sociodemographic variables and responses from the Likert scale questions of the SLENQ. With regard to missing data, a caveat must be noted: some participants did not respond to every question, so some items were tabulated with less than the total number of respondents. Furthermore, respondents could provide multiple responses for some items. Therefore, any single item’s responses may not total 100%.
RESULTS Sample Characteristics Demographics of the sample are displayed in Table 1. The vast majority of the participants were women (88.2%, n = 84), 10.5%, (n = 8) were men, and 1.3% was transgender (n = 1). Participants ranged in age from early 20s to 60, with slightly more than half under 36 (51%, n = 39), almost a quarter were between 36–45 years of age (22%, n = 17), and a quarter, were aged 46 or older (26%, n = 20). African Americans represented the largest racial group (46%, n = 34). Another 35% (n = 34) were Hispanic, 7% were Asian (5), 5% (n = 4) were White, and 7% identified as some other race. These sample characteristics are representative of previous social work studies of this population (Beckerman et al., 2011; Moses et al., 2005). More than half of the respondents (67%, n = 49); were never married; 18% (n = 13) were married or living with a domestic partner. One-third (25%, n = 28)
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Lupus (SLE) TABLE 1 Demographics
Gender
Race
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Age
Education level
Employment
Insurance
Admitted to hospital in past 12 months? How long since DX
Male Female Transgender Hispanic African American Asian White Other Under 21 21–35 36–45 46–60 High school or less Some college College grad Advanced degree Part time Full time Unemployed On disability Medicaid Medicare Private insurance None Yes No Within past year Three years ago Five years ago More than five years ago
%
N
10.5 88.2 1.3 35.1 45.9 6.8 5.4 6.8 6.6 44.7 22.4 26.3 33.3 33.3 28.0 5.3 13.3 9.3 33.3 44.0 71.9 8.8 11.8 1.5 31.8 68.2 14.5 11.5 3.3 70.5
8 67 1 26 34 5 4 5 5 34 17 20 25 25 21 4 10 7 25 33 53 6 8 1 20 43 9 7 7 43
of the respondents had at least some college education, and another third (n = 21) had an undergraduate or advanced college degree. A large proportion of the sample received disability for complications due to SLE (44%, n = 33), whereas 9% (n = 7) were working full time, 13% were working part time (n = 10), and a third were unemployed (n = 25). Loss of employment is a key finding and concurs with numerous studies that see loss of household income and work as a significant precursor to depressive states in SLE patients (Jolly, Mikolaitis, Shakoor, Fogg, & Block, 2010; Strand et al., 2013). Most of the respondents (74%, n = 45) were diagnosed with SLE more than five years ago; only 15% (n = 9) were diagnosed within the past year. In the past 12 months, almost one-third (32%, n = 20)) of the respondents were hospitalized because of complications from SLE. Respondents’ most frequent type of medical coverage was Medicaid (72%, n = 53), followed by private insurance (12%, n = 8), and Medicare (9%, n = 6). The majority of
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respondents’ primary source of medical care was provided by a clinic (78%, n = 43), followed by a private physician (20%, n = 11). More than half (56%, n = 31) of respondents indicated that their SLE was marked by a chronic set of symptoms. Another 24% (n = 13) reported having frequent flares, and 20% (n = 11) reported having infrequent flares. Joint aches, fatigue, and muscle pain were present for two-thirds or more of the respondents (n = 51).
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Factors that Impact Psychosocial Functioning For depression, participants experiencing fatigue rated their psychosocial need as 3.6 as compared with those not experiencing fatigue, who rated their need as 2.2 (t = 4.1, p = 0.00; df = 6). A similar pattern existed for anxiety where respondents experiencing fatigue had an average need of 3.4 compared to 2.2 for those who did not experience this (t = 3.9, p = .00, df = 62). Individuals experiencing hair loss also rated their level of need higher with a mean of 3.4 compared to 2.6 for those who did not experience hair loss (t = 2.4, p = .02, df = 62). For anxiety, respondents with frequent flares on average rated their psychosocial need as 3.6 compared to those with infrequent or chronic flare-ups, who rated their needs as 2.2 and 3.0, respectively (f = 3.9. p = 0.03, df = 54). These findings concur with previous research conducted in the area of Lupus (Auerbach & Beckerman, 2011, 2012; Seawell & Danoff-Burg, 2004). For depression, respondents hospitalized during the year rated their psychosocial need higher with a mean of 3.6 compared to 2.8 for those not hospitalized (t = 2.0, p = .05 df = 61). The results were similar but not significant for anxiety where those hospitalized on average rated their psychosocial need as 3.4 compared to 2.7 for those not hospitalized (t = 2.9, p = .07, df = 61). For SLE-related depression, respondents experiencing severe depression as measured by the BDI-II, on average rated their psychosocial need as 4.0 as compared with those not experiencing severe depression, who rated their need as 2.6 (t = 3.7, p = 0.00; df = 62). A similar pattern existed for anxiety where respondents experiencing severe depression, as measured by the BDIII, had an average psychosocial need of 3.8 compared to 2.5 for those who did not experience this (t = 4.2, p = .00, df = 62).
Factors That Impact Clinical Depression For the BDI-II, 46.2% of patients who were experiencing fatigue were also clinically depressed as compared to 8.1% who were not experiencing fatigue (Fisher’s exact = .000). No demographic characteristic was found to be associated to BDI clinical depression.
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Lupus (SLE) TABLE 2 Logistic Regression (N = 64) Dependent variable
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Beck Depression Inventory LR X2 = 12.4; p = .000 Beck Depression Inventory LR X2 = 15.1; p = .000 Beck Depression Inventory LR X2 = 4.4; p = .037
Independent variable
Odds ratio
95% CI
z
P
SLE Depression
1.9
1.3–3.0
3.1
.002
SLE Anxiety
2.4
1.4–3.9
3.4
.001
SLE Social economic Coping
1.4
1.0–2.1
2.0
.041
Logistic regression was utilized to test for the degree to which Lupusrelated depression, SLE-related anxiety, and social economic coping are related to BDI clinical depression. Because of co-linearity, each of the SLE sub-scales was tested separately. The odds ratios in this analysis are presented in Table 2. An odds ratio of 1 would indicate that the independent variable makes no difference with regard to the outcome. For example, if the odds ratio for SLE depression were 1, then a patient’s score on SLE depression would not increase the odds a patient, as measured by the BDI, was clinically depressed. An odds of 2 would suggest that a one unit increase in SLE depression increases the odds of clinical depression by 100%. For SLE-related depression, an odds ratio (OR) of 1.9 indicates a one unit increase in Lupus depression; the odds of clinical depression doubles. For SLE anxiety, the odds of clinical depression increased 1.5 times with a one-point increase on the SLE anxiety scale. For SLE economic coping, there was almost a 50% increase in the likelihood of clinical depression with a one-unit increase on this scale.
Medication Adherence As Table 3 displays, 65% (n = 39) of the respondents forget to take their medication. Close to 40% (n = 24) of the respondents indicated they are careless with their medication. A third indicated they stop taking their TABLE 3 Medication Compliance
Do you ever forget to take your medicine? Are you careless at times about taking your medicines? When you feel better, do you sometimes stop taking your medicine? Sometimes if you feel worse when you take the medicine, do you stop taking it?
%
n
Yes No Yes No Yes No Yes
65.0 35.0 39.3 60.7 33.9 66.1 34.4
39 21 24 37 20 39 40
No
65.6
21
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medication when they feel better. Finally, a little over a third who feels worse after taking their medication stops taking it. Although not statistically significant, 80% (n = 16) of those who, based on the BDI-II, are clinically depressed, forget to take their medication as compared to 57% (n = 23) who are not clinically depressed (Fisher’s exact = .07). An odds ratio of 3.0 (95% CI = .83 to 10.4) indicates that clinically depressed respondents odds are three times more likely to forget to take their medication than those who are depressed. More than half (55%, n = 11) of those clinically depressed indicate that if they feel worse when taking their medication, they stop taking it, as compared to 24% (n = 10) of those not clinically depressed (Fisher’s exact = .024). An odds ratio of 3.8 (p = .021; 95% CI = 1.2 to 11.8) indicates that respondents who are clinically depressed are almost four times more likely to stop taking their medication when they feel worse, compared to those who are not depressed.
Key Findings Summary ●
BDI-II confirms the SLENQ scale (Moses et al., 2005) is an accurate tool for discerning the presence of depressive symptomatology. ● Regarding medication adherence, patients who experience depression are more likely to forget taking their medications, and are more likely to stop taking their medications if they feel worse as a result.
DISCUSSION This study supports previous research that used the SLENQ and found depressive states as a common occurrence for patients living with Lupus (Beckerman et al., 2011; Moses et al., 2005). It is important to note that some of the depression may be preexisting to SLE. Some of it may be a reactive depression as one adjusts to living with this disease. For others, this may capture a chronic depressive state that is directly interlocked with the course of their SLE disease and treatment side-effects. Whether these depressive symptoms pre-date the diagnosis or are temporary or pervasive, it is essential for health care providers to understand the complicated dialectical relationship between depressive symptomatology and self-care. Learning that the greater the depressive symptoms, the more likely patients are to discontinue their medication regimens (either by forgetfulness or discouragement) provides evidence that depression can and does lead to poor medication adherence in SLE as it does in other chronic medical illnesses (DiMatteo, Lepper, & Croghan, 2000; Shaw et al., 1995).
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While this study supports the findings of Phillip et al. (2009), as well as those of Moses et al. (2005) and Beckerman et al. (2011), it also further elucidates the direct impact depression can have on Lupus self-care. Therefore, in screening, assessing, or counseling a new or current patient, social workers should always screen for major or persistent depression or dysthymia and its potential impact on self-care. Whether screening is done with the SLENQ, the BDI, or via self-reports, it now appears essential to formalize a calculated assessment to ascertain a patient’s level of depressive symptomatology. Should significant indications for depression (via SLENQ or BDI-II, or other standardized and well validated tools) be identified in an individual with SLE, a risk assessment, and further screening of patients’ adaptation and coping, family and environmental resources, is indicated, and a provision for individual counseling by the hospital social worker, other mental health professional, or a community referral be made. Psychoeducational groups with peers who share the same illness can also allow for the provision of educational tools and resources, as well as exploration and expression of depressive feelings to provide a shared space to problem solve. Further, several studies (Karlson, Liang, & Eaton et al., 2004; Kozora, Ellison, Waxmonsky, Wamboldt, & Patterson, 2005; Ng & Chan, 2007) have demonstrated that such interventions can improve modifiable risk factors and SLE outcomes, including couples communication, self-efficacy, mental health status, psychological well-being, and fatigue. An evidence-based Chronic Disease Self-Management Program (CDSMP) used throughout the world was developed, as well as an earlier Arthritis SelfManagement Program, which has also been adapted for Lupus (Braden, 1991). The intervention relies on a manualized educational intervention, emphasizing mutual support. Results have indicated improvement on a number of psychosocial metrics. William, Penfield, Kamen, and Oates (2014) in their Balancing Lupus Experiences with Stress Strategies Study (BLESS), demonstrated that participating in multisession workshops based on the CDSMP, yielded a clinical significant improvement in depression, using the BDI-II (d = 1.63 and d = 1.68), as well as several other indicators of stress. Drenkard and colleagues (2012) utilized the CDSMP with low-income African Americans with Lupus, with significant improvements in several self-management behaviors, including adherence. Individual interventions utilizing trained peers with Lupus have also proven effective. In a study of 153 users of LupusLine® a social work led national telephone peer counseling service, decreases in feelings of Lupus-related depression, isolation, anxiety, and increases in coping and feeling more in control resulted with >93% attributing these changes to LupusLine service utilization (Horton, Peterson, Powell, Engelhard, & Paget, 1997). These evidence-based interventions may be readily adapted by social workers and other health professionals working in collaboration with
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colleagues and Lupus patient partners. Clinical initiatives and program development should emphasize patient education and advocacy as it has been found to be a mitigating factor in both depression and anxiety for women living with Lupus (Beckerman & Sarracco, 2012). Culturally tailored interventions for diverse and medically underserved communities should be assessed and addressed (Doran et al., 2003; Drenkard et al., 2012; Feldman et al., 2013; Fernandez et al., 2009; Rose, Doran, Horton, Flics, & Paget, 2006; Sandoval, Mendez, Horton, Isgro, & Rose, 2013; Tran, Horton, Yee, & Paget, 2009; Williams et al., 2014). In addition to individual and group psychoeducational interventions and support, those persons with SLE who are suffering from a previously undiagnosed and untreated major depression can be referred for a psychopharmacology consultation (Ng & Chan, 2007). By working in close collaboration with the health care team to establish routine protocols for careful screening, identification, and intervention for depressive symptoms, we may be able to interrupt the potential for a negative cycle wherein illness activity and impact contributes to depression, which in turn interferes with optimal self-care and optimal health outcomes (Karlson et al., 2004).
CONCLUSION It is critical to build on the established knowledge of depression in SLE and its’ relationship to medication adherence. The literature has suggested that further research is needed to identify potential biomarkers for depression and Lupus, as well as the specific sources of psychosocial contributors to depression, which may be multidetermined. Future research should continue to try to identify which forms of psychosocial interventions appear most effective for which types of SLE-related challenges.
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