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Stigma, discrimination and medication adherence in schizophrenia: Results from the Swedish COAST study
Psychiatry Research 220 (2014) 811–817
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Psychiatry Research journal homepage: www.elsevier.com/locate/psychres
Stigma, discrimination and medication adherence in schizophrenia: Results from the Swedish COAST study Cecilia Brain a,b,n, Birgitta Sameby b, Katarina Allerby b, Patrick Quinlan a,b, Erik Joas a, Eva Lindström c, Tom Burns d, Margda Waern a a
Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry, Sahlgrenska Academy, University of Gothenburg, Sweden Psychosis Clinic, Sahlgrenska University Hospital, Gothenburg, Sweden c Department of Neuroscience, Uppsala University Hospital, Uppsala, Sweden d Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford, United Kingdom b
art ic l e i nf o
a b s t r a c t
Article history: Received 23 May 2014 Received in revised form 22 August 2014 Accepted 12 October 2014 Available online 23 October 2014
The aims of this naturalistic non-interventional study were to quantify the level of stigma and discrimination in persons with schizophrenia and to test for potential associations between different types of stigma and adherence to antipsychotics. Antipsychotic medication use was electronically monitored with a Medication Event Monitoring System (MEMSs) for 12 months in 111 outpatients with schizophrenia and schizophrenia-like psychosis (DSM-IV). Stigma was assessed at endpoint using the Discrimination and Stigma Scale (DISC). Single DISC items that were most frequently reported included social relationships in making/keeping friends (71%) and in the neighborhood (69%). About half of the patients experienced discrimination by their families, in intimate relationships, regarding employment and by mental health staff. Most patients (88%) wanted to conceal their mental health problems from others; 70% stated that anticipated discrimination resulted in avoidance of close personal relationships. Non-adherence (MEMSs adherencer0.80) was observed in 30 (27.3%). When DISC subscale scores (SD) were entered in separate regression models, neither experienced nor anticipated stigma was associated with adherence. Our data do not support an association between stigma and non-adherence. Further studies in other settings are needed as experiences of stigma and levels of adherence and their potential associations might vary by a healthcare system or cultural and sociodemographic contexts. & 2014 Elsevier Ireland Ltd. All rights reserved.
Keywords: Discrimination and Stigma Scale (DISC) Experienced discrimination Anticipated discrimination Antipsychotics Medication Event Monitoring System (MEMSs)
1. Introduction Schizophrenia is one of the most stigmatized mental disorders (Angermeyer et al., 2003; Corrigan, 2004) and stigma causes a significant burden for patients and their next-of-kin (Grausgruber et al., 2007; Jorm and Griffiths, 2008; Read et al., 2006). The term stigma overarches problems of knowledge (ignorance), attitudes (prejudice) and behavior (discrimination) (Thornicroft et al., 2007). Almost half of patients with schizophrenia experience considerable levels of stigma and two-thirds report perceived discrimination due to mental illness (Brohan et al., 2010). Stigma reduces the rate of help-seeking and contributes to diminished access to care, deficient treatment, social exclusion and financial hardship (Beldie et al., 2012; Thornicroft, 2007). Additionally, psychiatric medication is commonly
n Corresponding author at: Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry, Sahlgrenska Academy, University of Gothenburg, Nå Ut-teamet Kronhusgatan 2F, IV, SE-411 13 Gothenburg, Sweden. Tel.: þ 46 73 625 4602; fax: þ 46 31 701 7430. E-mail addresses: [email protected], [email protected] (C. Brain).
http://dx.doi.org/10.1016/j.psychres.2014.10.016 0165-1781/& 2014 Elsevier Ireland Ltd. All rights reserved.
stigmatized and often considered ineffective by the general public (Corrigan, 2004). 1.1. Adherence and stigma Many researchers contend that stigma might be a potentially important factor contributing to non-adherence to antipsychotics (Lacro et al., 2002; Sajatovic and Jenkins, 2007; Velligan et al., 2009). Non-adherence leads to increased hospitalization, higher health care costs and is a predictor of poor outcome related to relapse rates (Haddad et al., 2014), progressive brain damage (van Haren et al., 2007), suicide (Velligan et al., 2009) and overall mortality (Tiihonen et al., 2011). International treatment guidelines recommend long term treatment with antipsychotics in schizophrenia (Velligan et al., 2009), thus underlining the importance of identifying potential predictors of medication non-adherence (Kane et al., 2013). A clinical assumption is that both patient experienced discrimination and anticipated stigma increase non-adherence since negative attitudes, shame and social withdrawal can cause failure to access health care. Stigma was identified as an important barrier
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to adherence in a recent qualitative study (Teferra et al., 2013). Patients, especially those who had improved, did not want to be seen in the company of mental health staff. In a small qualitative study about one-third reported that antipsychotic medication was linked to stigma and self-esteem (Tranulis et al., 2011). Some of the participants in that study related that the likelihood of adherence would have been larger if they early on had been honestly informed that the need for medication might be life-long. Patients in an earlier pilot study considered that the stigma of taking antipsychotics was the main barrier to adherence (Hudson et al., 2004). Others found that patients with employment had a more negative drug attitude and ran an increased risk of non-adherence, possibly connected to the stigma of having to take antipsychotics to function, and the drawback of simultaneously suffering from debilitating side effects (Freudenreich et al., 2004; Hofer et al., 2002). Another study found that the drug attitude of the patient was a predictor of adherence (Brain et al., 2013), but the association between stigma and adherence has not previously been formally assessed using quantitative methods. Fear of stigma connected to the diagnosis and being prescribed antipsychotics and fear of rejection due to revealing psychotic symptoms have been suggested to further increase non-adherence to both psychiatric and physical treatment (Freudenreich et al., 2004; Goff et al., 2010; Thornicroft, 2008). In a qualitative study patients reported that the stigma of taking antipsychotics caused them to hide their medication from others and to take it only in privacy (Jenkins and Carpenter-Song, 2009). Stigma has been shown to be associated with unfair treatment in several areas of life of individuals with mental illness (Sartorius and Schulze, 2005; Corker et al., 2014). However, most previous stigma studies are descriptive surveys covering attitudes of the general public. Few studies systematically assess the behavioral aspects and the actual experience and/or anticipation of stigma and discrimination, or the clinical context of the person diagnosed with schizophrenia (Thornicroft et al., 2009). 1.2. Electronic monitoring of adherence Various subjective and objective measures have been used to assess non-adherence and a wide variety of non-adherence rates have been reported, from an objectively measured non-adherence rate of 27% (Brain et al., 2013) to a subjectively measured nonadherence of 0% (Byerly et al., 2005). In a review a mean range of non-adherence between 20% and 89% was found depending on population studied and methodology used (Lacro et al., 2002). When defining adherence as Z 80% of prescribed dosages correctly taken, adherence rates between 86% (Velligan et al., 2007) and 8% (Yang et al., 2012) have been reported. Very few studies have used validated stigma scales (Brohan et al., 2013) and studies that combine psychometrically validated stigma measures and objective monitoring of adherence are lacking. To our knowledge no previous studies have explored the association between patient-experienced stigma and discrimination and objectively monitored non-adherence. The aims were to quantify the level of stigma experiences by persons with schizophrenia and to test for an association between stigma and adherence to antipsychotics.
2. Methods 2.1. Procedure The study Cognition, Adherence and Stigma in Schizophrenia (COAST) was carried out between October 2008 and June 2011 at eight psychiatric outpatient units at the Sahlgrenska University Hospital in Gothenburg, Sweden. The COAST study was designed to investigate predictors of medication adherence (Brain et al.,
2013) and to compare different methods for the measurement of adherence (Brain et al., 2014). This paper reports predetermined analyses of the level of stigma and discrimination and of stigma as a predictor of adherence. In all analyses we measured adherence to antipsychotics over 12 months in a large cohort of outpatients with schizophrenia using the Medication Event Monitoring System ([MEMSs], Aprex Corporation, Fremont, CA, USA), which is considered the reference standard (Velligan et al., 2006). An initial power analysis was performed in advance (Power and Precision) for sample size calculation. The COAST study was approved by the regional ethics committee in Gothenburg (No. 148-08).
2.2. Subjects Psychiatrists and clinical staff were asked to identify patients fulfilling the study criteria. The research psychiatrist (CB), together with one of the two trained study nurses (BS, KA), fully informed the patients about the study protocol and monitoring procedures and written informed consents were obtained. Of the first 250 identified patients, 131 accepted participation and gave a written informed consent. However, 14 of these declined to use the MEMSs bottle. A further five did not provide stigma data and one gave incomplete responses leaving a total cohort of 111 persons for this study. Inclusion criteria were as follows: age 18–65, a prescription of unsupervised oral antipsychotics and a clinical diagnosis of schizophrenia or schizophrenia-like psychosis by the treating psychiatrist according to DSM-IV. The term “schizophrenia-like” was used in cases where the psychiatrists described psychopathology in accordance with DSM-IV criteria for schizophrenia without having formally made the diagnosis. Schizoaffective disorders were not included due to frequent diagnostic difficulties differentiating them from bipolar disorders in the clinic. Exclusion criteria were as follows: hospitalization for substance abuse in the year preceding the study, acute risk of suicide, severely intellectually challenged with learning difficulties leading to special educational needs, need for an interpreter, dispensation of antipsychotics by pillbox and treatment with long-acting injectable antipsychotics.
2.3. Instruments The Discrimination and Stigma Scale (DISC 12) (Brohan et al., 2013; Thornicroft et al., 2009) was translated into Swedish and back translated. A focus group of six persons with a clinical diagnosis of schizophrenia who were not enrolled in the study ensured that the terminology was well adapted to Swedish language and context. The DISC was administered by the research psychiatrist at the 12 month endpoint visit to assess the patients' past experiences of stigma since the first appearance of a mental health problem. The 32 items were scored on a 4-point scale and anchored at 0 (not at all) to 3 (a lot). A not-applicable category was included for questions not relevant to the patient, such as in relation to having children. The respondents were provided with a rating guide sheet with available choices to increase reliability in accordance with DISC rating instructions. The four DISC subscales were as follows: patient experienced discrimination (Item 1–21), anticipated discrimination (Item 22–25), overcoming stigma (Item 26: “Have you made friends with people who don't use mental health services?”, and item 27: “Have you been able to use your personal skills or abilities in coping with stigma and discrimination?”), and positive treatment due to the mental illness (Item 28– 32). Discrimination was defined as unfair treatment and unjust distinction in how different people are being treated by others (Thornicroft et al., 2009). The anticipated discrimination subscale (four items) refers to the extent to which the patients limit their involvement in important aspects of daily life, such as intimate relationships and work, because of anticipation that stigma might occur. Subscale mean scores were calculated by summing the rating (0–3) for each item and then divided by the number of applicable items the individual had responded to (Thornicroft et al., 2009). For frequency reports of the DISC items a rating of Z 1 (i.e. a little or more) was used to define endorsed discrimination. The same research psychiatrist rated symptom level and other clinical characteristics at baseline and endpoint. The severity of psychopathology was evaluated with the Positive and Negative Syndrome Scale for Schizophrenia (PANSS) (Kay et al., 1987) and insight with the PANSS item G12. Eight items derived from the PANSS were dichotomized ( r 3 or 43) and used to identify cases in symptomatic remission in accordance with the Structured Clinical Interview for Symptoms of Remission (SCI-SR) (Andreasen et al., 2005). The time criterion of 6 months could not be assessed. Psychosocial function was evaluated using the Personal and Social Performance Scale (PSP) (Morosini et al., 2000) and the Global Assessment of Functioning (GAF) (Endicott et al., 1976). Both GAF and PSP are 100-point rating scales, where higher scores indicate better functioning. The PSP scale measures functioning in four areas of life (self-care, social activities, personal and social relations, disturbing and aggressive behavior). Severity of the psychotic disorder was rated on a 7-point scale (1 ¼ normal, 7¼extremely ill) using the Clinical Global Impression scale-Severity of illness (CGI-S) (Guy, 1976). To assess attitude, experience and beliefs about antipsychotics the 10-item self-report Drug Attitude Inventory (DAI-10) was used (Hogan et al., 1983). Scores ranged from 10 (very poor attitude) to þ 10 (best possible attitude). Data regarding current and historical substance and alcohol abuse was retrieved from medical records.
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2.4. Monitoring of adherence As previously described in detail (Brain et al., 2014) the study nurse monitored and filled the MEMSs bottles at baseline and at approximately 2 month intervals for a year (no refill at final monitoring). Separate bottles were employed for patients prescribed several antipsychotics. Other concomitant medication was not MEMS© monitored. Patients were instructed to take their antipsychotics as prescribed by their psychiatrists. In three cases the patients' psychiatrists converted the treatment to long acting injectables during the monitoring period and these patients were regarded as non-adherent for the purpose of this study. The MEMS© has a medication bottle cap equipped with a microprocessor that records the occurrence and time of each bottle opening. MEMSs adherence was defined as the number of days which the patient took at least the prescribed dose divided by the number of prescribed days. The possible range of this continuous measure was 0.00–1.00. A value of 1.00 was given when the number of bottle openings exceeded the prescribed. In cases with more than one bottle, the MEMSs adherence measure for the bottle with the lowest adherence was used. Calculations of adherence were made for every calendar day with a cut-off at midnight. The mean of six adherence measurements across the 1-year study period was calculated. Mean adherence was then dichotomized into two categories, defined as adherent ( 40.80) vs. non-adherent (Remington et al., 2007). Two patients discontinued MEMSs monitoring during the study period and were rated as non-adherent as their adherence was below 0.80 for the duration of the registered monitoring. They were included in the analyses using a last-valuecarried-forward procedure. Five patients were hospitalized during the study period and only one of these was rated as adherent based on case records and data from the MEMSs registration period prior to hospitalization. 2.5. Statistical methods Group comparisons were carried out using Student's t-test for continuous variables. Chi-square test was used for categorical variables. Spearman's rank correlation coefficient was employed to estimate the correlation between variables. Univariate logistic regression analyses (n¼ 111) were performed to estimate associations between DISC mean subscale scores and MEMSs non-adherence. In a second step multivariate logistic regression models were fitted for each DISC subscale mean score, adjusted for DAI-10 and PSP. The latter two were included as we have previously shown that drug attitude (DAI-10) and psychosocial function (PSP) are associated with nonadherence after analyzing a broad range of candidate factors (Brain et al., 2013). Due to the relatively small number of non-adherent patients we limited the number of confounders to two. All measures included in the analyses were from the endpoint rating. Multicollinearity was tested for in the multivariate models using the Variance inflation factor (VIF). A VIF-value of 2.5 or higher was used as a cut-off indicating problematic multicollinearity. R 3.0.1. and IBM SPSS 21.0 were used for all analyses.
3. Results 3.1. Drop-out analysis The 20 drop-outs who had initially accepted participation did not differ from the 111 patients with both stigma and adherence data in terms of age, gender or education. However they had greater total and general symptom severity; PANSS total: drop-outs¼68.0 vs. included¼60.1, p¼0.022; PANSS general: drop-outs¼ 32.0 vs. included¼29.7, p¼0.021), but did not differ in positive or negative symptom burden (PANSS positive: drop-outs¼16.5 vs. included¼ 14.1, p¼ 0.051; PANSS negative: drop-outs¼18.5 vs. included¼ 16.3, p¼ 0.097). No differences in terms of psychosocial function (PSP) were observed between dropouts and participants (42.3 vs. 47.2, p¼ 0.067); the same was the case for GAF: (41.6 vs. 45.1; p¼0.139).
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Table 1 Demographic and clinical characteristics of patients at baseline: the COAST study. Total (n ¼111) Gender (male/female), n Age, years Education, years n ( r12/ 412) Marital status, n (%) Single Married Partnership Living situation, n (%) Independent Custodial care Institution Employment, n (%) Regular Supported/sheltered/volunteer No employment Sick-leave, disability retirement First generation antipsychotics, n (%) Substance and alcohol abuse, n (%) Duration of illness, years n (%) 0–5 6–10 11–15 4 15 Duration of untreated psychosis, years n (%) 0 1–4 5–10 4 10 Exacerbations, n (%) 1–2 3–5 6–9 49 Diagnosis (DSM-IV), n (%) Paranoid schizophrenia Undifferentiated schizophrenia Residual schizophrenia Delusional disorder Psychotic disorder NOS Symptom and function ratings PANSS, total Judgment and insighta SCI-SR, n (%) DAI-10 PSP GAF CGI-S Discrimination and Stigma Scaleb Experienced discrimination Anticipated discrimination Overcoming stigma Positive treatment
70/41 45.8 (11.1) 48/63 97 (87.4) 4 (3.6) 10 (9.0) 63 (56.8) 33 (29.7) 15 (13.5) 16 19 76 93 15 36
(14.4) (17.1) (68.5) (83.8) (13.5) (32.4)
13 19 17 62
(11.7) (17.1) (15.3) (55.9)
51 33 16 11
(45.9) (29.7) (14.4) (9.9)
14 33 24 40
(12.6) (29.7) (21.6) (36.0)
18 48 10 9 26
(16.2) (43.2) (9.0) (8.1) (23.4)
60.1 3.7 60 5.1 47.2 45.1 2.8
(13.2) (1.1) (54.1) (3.9) (11.0) (10.1) (0.9)
0.7 1.4 1.1 0.3
(0.4) (0.7) (0.8) (0.3)
Values denote mean (standard deviation) if not specified otherwise. PANSS ¼ Positive and Negative Syndrome Scale. a Judgment and insight ¼ PANSS G12; SCI-SR ¼ The Structured Clinical Interview for Symptoms of Remission; DAI¼Drug Attitude Inventory 10 Items; PSP ¼Personal and Social Performance Scale; GAF ¼Global Assessment of Functioning; CGI-S ¼Clinical Global Impression-Severity. b Administered at endpoint.
3.2. Sociodemographics 3.3. Reported stigma Demographic and clinical characteristics of the study cohort at baseline are shown in Table 1. Mean duration of illness was 19.5 years defined as the time from the first documentation of psychotic symptoms in the medical files until study inclusion. More than half of the patients had at least six previous psychotic exacerbations. Mean duration of untreated psychosis (DUP) was 3.4 years and was defined as the time from the first documentation of psychotic symptoms in the medical files until registered onset of antipsychotic treatment.
Of the 111 included patients the proportions with a rating of “a little”, “moderate” or “a lot” (Z 1) per DISC subscale were as follows: experienced discrimination 31.5% (n¼35), anticipated discrimination 64.8% (n¼72), overcoming stigma 63.1% (n¼ 70), and positive treatment 5.4% (n¼ 6). The mean DISC subscale scores (SD) are shown in Table 1. Proportions of applicable/valid DISC item responses are shown in Fig. 1. The highest proportions of experienced discrimination and unfair treatment on the single item level
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were reported within the area of social relationships. The majority (71%) experienced discrimination in keeping or making friends, or felt discriminated by their neighbors (69%). Almost two-thirds (62%) of the respondents reported having been avoided because of their mental health problems. Half (50%) of the patients had experienced discrimination by mental health care staff and more than one-third (36%) had been treated unfairly when seeking medical attention for physical health issues. Due to anticipated stigma and discrimination most patients had concealed their mental health problem (88%) and avoided close relationships (70%). About half of the respondents did not apply for work (51%) or education (43%) for fear of unjust treatment because of their mental illness. Most patients (78%) claimed to have at least some personal strategy and skill to overcome and cope with stigma. Positive treatment by the next-of-kin, because of the patient's mental illness, was experienced by 51%. The experienced and anticipated discrimination subscales were positively correlated (rho ¼0.503; po0.001), while anticipated discrimination was observed to be inversely associated with overcoming stigma (rho¼ 0.365; po001). Moderate correlations were observed between PSP and anticipated discrimination (rho¼0.311; p¼0.001) and PSP and overcoming stigma (rho¼0.487; po0.001). The correlation between DAI-10 and overcoming stigma (rho¼0.242; p¼0.010) was also moderate. No other correlation between independent variables reached significance. No changes in these findings were observed when reanalyzing the DISC subscales in sensitivity analyses employing categorical subscale variables (any subscale item scored Z2) (data not shown). 3.4. Association with adherence As previously reported (Brain et al., 2013), non-adherence (MEMSs monitored adherencer0.80) was observed in 30 cases (27.3%) and there was no significant fluctuation of mean adherence over the study period (Brain et al., 2014). In univariate logistic
regression models including all 111 study participants (Table 2), neither experienced nor anticipated discrimination was associated with non-adherence. An inverse association was shown between overcoming stigma and non-adherence. No association was observed between positive treatment and non-adherence. After adjusting the logistic regression models for DAI-10 and PSP, none of the DISC subscale mean scores reached significance in association with non-adherence in the multivariate model (Table 2).
4. Discussion 4.1. Findings We employed an objective measure of adherence and a validated stigma scale to examine the association between adherence to antipsychotics and experiences of stigma and discrimination in schizophrenia. In this study a high proportion of the patients reported at least some experienced and anticipated discrimination, especially within the field of social and intimate relationships. Overcoming stigma was associated with adherence in univariate analysis, but none of the DISC mean subscale scores were associated with adherence in adjusted models where psychosocial function and drug attitude were taken into consideration. Together with the regular monitorings and the heightened focus on medication, as in any adherence study, the inclusion criteria might have introduced a selection bias towards more adherent patients agreeing to take part in this year-long research study, leaving a rather small non-adherent sub-group to be studied. This may have affected the power of the study to identify an association between stigma and non-adherence. More than half of the respondents had felt shunned and socially excluded. Even if a majority of the patients reported that they had at least some skills to overcome stigma and
Fig. 1. Proportions of DISC items. N refers to applicable/valid item responses. ED ¼experienced discrimination subscale; AD ¼anticipated discrimination subscale; OS ¼ overcoming stigma subscale; P ¼ positive treatment subscale; MHP ¼ mental health problem; MHS ¼ mental health service.
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Table 2 Univariate and multivariate logistic regression models predicting MEMSs nonadherence by mean DISC subscale scores of the Discrimination and Stigma Scale. Univariate
Multivariate
Variable
OR
CI (95%)
p-Value OR
CI (95%)
p-Value
Experienced discrimination Anticipated discrimination Overcoming stigma Positive treatment
1.05 1.37 0.50 0.33
0.41–2.68 0.78–2.39 0.28–0.91 0.08–1.45
0.926 0.276 0.024 0.141
0.18–1.69 0.45–1.68 0.39–1.65 0.96–2.32
0.294 0.669 0.552 0.354
0.55 0.87 0.80 0.47
Multivariate regression models were adjusted for drug attitude (Drug Attitude Inventory 10 Items, DAI-10) and psychosocial function (Personal and Social Performance Scale, PSP).
discrimination the most common coping strategy seemed to be avoidance. Almost all inhibited themselves by concealing the diagnosis, avoiding close relationships or not applying for work or studies due to fear of discrimination. This ostensible coping strategy can be an obstacle in patient centered rehabilitation, where social integration is considered to be central for both work and family life. In the clinic social withdrawal also makes psycho education of patient and family more difficult. Furthermore, openness regarding the mental disorder and the treatment might be hard to achieve. Positive treatment was acknowledged by 58.6% (mean subscale score Z 0), a proportion not unlike that reported in a recent British study using the same instrument (Brohan et al., 2013). Positive treatment may be over reported as patients only being treated with civility may interpret this as an advantageous treatment due to negative expectations (Brohan et al., 2013; Rose et al., 2011). On the other hand, routine incivility or social caution might not be discriminatory even if easily interpreted as such. Stigmatizing attitudes and behavior have also been previously demonstrated in psychiatric and general medical staff (Brohan et al., 2013; Stuart et al., 2012; Thornicroft, 2006). In our study one-third felt discriminated when seeking physical health care and approximately half of the patients felt stigmatized by mental health staff. These findings parallel those of a recent study (Brohan et al., 2013). The difficulties encountered in contact with somatic care might be partially explained by a lack of knowledge from those professional caregivers about mental illness in general or about the psychiatric diagnosis of a particular patient, as well as by fear and misinterpretation of psychiatric symptomatology. Both psychiatrists and somatic physicians alike need raised awareness about how stigmatization of the mentally ill impacts the quality of care within all disciplines of medicine (Leucht et al., 2007). Anticipated discrimination has been shown to be closely related to low self-esteem, feelings of shame and a reluctance to accept a diagnosis or medication (Thornicroft, 2006); thus it would have been expected to be associated directly with non-adherence. One reason for the lack of association found here might be that many study patients were treated with case management in a community mental health setting influenced by assertive community treatment (ACT) (Malm et al., 2014). This mode of working has previously been shown to improve adherence (Zygmunt et al., 2002) and might have increased adherence rates in our study. The role of the care delivery system and the frequency of visits have been shown to play an important role in improving adherence (Vita et al., 2012). The compensatory and facilitating active community mental health approach emphasizes empowerment of the patient and has been shown to increase psychosocial function. Adjustment and problem solving in everyday life is the basis for finding alternative strategies (Morosini et al., 2000) and may be assumed to be of use both when having to cope with stigma and taking medication. This is in line with the suggestion of a recent review that a shared discussion,
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between patients and health care professionals, about the patient's beliefs and attitudes about medication could facilitate the integration of psychopharmacology and psychological therapy and help reduce the stigma of having to medicate (Seeman and Seeman, 2012). The mean DISC subscale scores in the present study were low and not unlike those reported in a previous study involving patients with mixed diagnoses (less than a third with schizophrenia) (Brohan et al., 2013). The need to conceal the diagnosis was higher in our study (88%) than previously reported (72%) in the global INDIGO study (Thornicroft et al., 2009). This might in part be explained by the higher education level of the patients in the current study, as it has been shown that more highly educated patients prefer to conceal the diagnosis to a greater degree than those with lower education level (Ucok et al., 2012). 4.2. Limitations and strengths Several methodological considerations need to be discussed. This is a clinical study and diagnoses were made by the treating psychiatrists; research diagnoses were not determined. The DISC provides a subjective measure of the degree to which a range of everyday situations are experienced as discriminating, but the frequency of these experiences is not captured. Also, the DISC does not address the impact of discriminative experiences on the individual. Another instrument, such as the Inventory of Stigmatizing Experiences (ISE) (Stuart et al., 2008) which also measures the impact of stigmatizing experiences might yield other results. The 21-item experienced discrimination subscale of the DISC employed in the current study is almost identical to the 22-item version that was recently shown to be psychometrically robust (Brohan et al., 2013). The 4-item anticipated stigma subscale derived from the DISC 12 has not been validated; the developers now recommend an expanded version with 14 items (Gabbidon et al., 2013). The overcoming stigma subscale in our study is identical to the above mentioned study, in which DISC was psychometrically evaluated (Brohan et al., 2013), whereas two DISC items had been added to the positive treatment subscale in that study. These changes are small and unlikely to compromise general comparisons. Limitations were that MEMSs bottles cannot detect discarding of pills and that eligible patients were identified by their case managers and psychiatrists, which together with the regular monitorings could have increased adherence rates. Also, a shorter illness duration is a known risk factor for non-adherence (Lacro et al., 2002) whereas many study participants were older with a longer history of illness. Patients using pillboxes were excluded as we intended to study the extent of non-adherence without support mechanisms. Reminder functions are known to improve adherence, but not always readily available in clinical practice. A selection bias towards more adherent patients with less experiences of stigma might have been introduced. The relatively small number of non-adherent patients limited the number of confounders and additional factors in our models. Additionally, the 0.8 cutoff for adherence might not be a true reflection of clinically relevant non-adherence. Strengths of this large naturalistic study were the long observation period with an objective measure of adherence and the use of a valid and psychometrically strong measure of patient experienced stigma and discrimination. The patients were well characterized regarding demographic and clinical data. Home visits were used to reduce missing adherence data. Few participants were lost to follow-up and the same research psychiatrist performed all the clinician ratings. 4.3. Conclusions Almost two-thirds of the participants felt discriminated within the area of social relationships and half felt discriminated by
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mental health staff and in employment-related situations. Further, anticipated discrimination caused more than half of the participants to limit their activities and to conceal their diagnosis. Even though an association between stigma and adherence was not found in the current study, both phenomena profoundly affect persons with schizophrenia. Further studies are needed to investigate associations between various stigma measures and adherence in other settings.
Conflict of interest Cecilia Brain has received speaker's honoraria from AstraZeneca, Eli Lilly, Janssen Pharmaceuticals, Otsuka Pharmaceuticals, Roche, Takeda, Medivir and Lundbeck. Eva Lindström has received speaker's honoraria from Bristol-Myers Squibb, AstraZeneca, Lundbeck, Takeda, Janssen Pharmaceuticals and Eli Lilly. Tom Burns has received speaker's honoraria from Janssen Pharmaceuticals and Otsuka Pharmaceuticals and unrestricted educational support for workshops from Janssen Pharmaceuticals. Katarina Allerby has received speaker's honoraria from Eli Lilly and honoraria from AstraZeneca for the development of educational material. Birgitta Sameby has received honoraria from AstraZeneca and Janssen Pharmaceuticals for the development of educational material. All other authors have nothing to declare.
Contributors Cecilia Brain and Margda Waern designed the study and developed the protocol. Birgitta Sameby and Katarina Allerby coordinated patient recruitment and data collection. Cecilia Brain managed the literature search and carried out psychiatric examinations for all participants. Patrick Quinlan and Erik Joas undertook the statistical analyses and contributed to the interpretation of data. Cecilia Brain drafted the original manuscript. Margda Waern, Tom Burns and Eva Lindström supervised the manuscript preparation. All authors contributed to the interpretation of data, and manuscript preparation and have approved the final manuscript. Margda Waern was senior supervisor for the project.
Acknowledgments The authors wish to thank all participating patients and clinical staff, Susan Landqvist-Stockman, Pia Rydell and the Psychosis Clinic at Sahlgrenska University Hospital, Gothenburg, Sweden for facilitating the study. Gunnar Edman at the Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden for statistical consultation. Graham Thornicroft and co-workers at King's College London, Health Service and Population Research Department, Institute of Psychiatry and Norman Sartorius, the Association for Improvement of the Mental Health Programmes, Geneva for kind assistance with the DISC scale. The study was supported by grants from the Swedish Research Council (Grant no. K2009-62X-21079-01-3), the Gothenburg Center for Personcentered Care, the Söderström-Königska Foundation (2008-21951, SLS-232731), Psykiatrifon;den, and the LUA/ALF agreement for biomedical research and by unrestricted investigator initiated trial Grants from Lundbeck, Eli Lilly, Janssen, and AstraZeneca. The sponsors had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; or in the decision to submit the paper for publication.
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Contents lists available at ScienceDirect
Psychiatry Research journal homepage: www.elsevier.com/locate/psychres
Stigma, discrimination and medication adherence in schizophrenia: Results from the Swedish COAST study Cecilia Brain a,b,n, Birgitta Sameby b, Katarina Allerby b, Patrick Quinlan a,b, Erik Joas a, Eva Lindström c, Tom Burns d, Margda Waern a a
Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry, Sahlgrenska Academy, University of Gothenburg, Sweden Psychosis Clinic, Sahlgrenska University Hospital, Gothenburg, Sweden c Department of Neuroscience, Uppsala University Hospital, Uppsala, Sweden d Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford, United Kingdom b
art ic l e i nf o
a b s t r a c t
Article history: Received 23 May 2014 Received in revised form 22 August 2014 Accepted 12 October 2014 Available online 23 October 2014
The aims of this naturalistic non-interventional study were to quantify the level of stigma and discrimination in persons with schizophrenia and to test for potential associations between different types of stigma and adherence to antipsychotics. Antipsychotic medication use was electronically monitored with a Medication Event Monitoring System (MEMSs) for 12 months in 111 outpatients with schizophrenia and schizophrenia-like psychosis (DSM-IV). Stigma was assessed at endpoint using the Discrimination and Stigma Scale (DISC). Single DISC items that were most frequently reported included social relationships in making/keeping friends (71%) and in the neighborhood (69%). About half of the patients experienced discrimination by their families, in intimate relationships, regarding employment and by mental health staff. Most patients (88%) wanted to conceal their mental health problems from others; 70% stated that anticipated discrimination resulted in avoidance of close personal relationships. Non-adherence (MEMSs adherencer0.80) was observed in 30 (27.3%). When DISC subscale scores (SD) were entered in separate regression models, neither experienced nor anticipated stigma was associated with adherence. Our data do not support an association between stigma and non-adherence. Further studies in other settings are needed as experiences of stigma and levels of adherence and their potential associations might vary by a healthcare system or cultural and sociodemographic contexts. & 2014 Elsevier Ireland Ltd. All rights reserved.
Keywords: Discrimination and Stigma Scale (DISC) Experienced discrimination Anticipated discrimination Antipsychotics Medication Event Monitoring System (MEMSs)
1. Introduction Schizophrenia is one of the most stigmatized mental disorders (Angermeyer et al., 2003; Corrigan, 2004) and stigma causes a significant burden for patients and their next-of-kin (Grausgruber et al., 2007; Jorm and Griffiths, 2008; Read et al., 2006). The term stigma overarches problems of knowledge (ignorance), attitudes (prejudice) and behavior (discrimination) (Thornicroft et al., 2007). Almost half of patients with schizophrenia experience considerable levels of stigma and two-thirds report perceived discrimination due to mental illness (Brohan et al., 2010). Stigma reduces the rate of help-seeking and contributes to diminished access to care, deficient treatment, social exclusion and financial hardship (Beldie et al., 2012; Thornicroft, 2007). Additionally, psychiatric medication is commonly
n Corresponding author at: Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry, Sahlgrenska Academy, University of Gothenburg, Nå Ut-teamet Kronhusgatan 2F, IV, SE-411 13 Gothenburg, Sweden. Tel.: þ 46 73 625 4602; fax: þ 46 31 701 7430. E-mail addresses: [email protected], [email protected] (C. Brain).
http://dx.doi.org/10.1016/j.psychres.2014.10.016 0165-1781/& 2014 Elsevier Ireland Ltd. All rights reserved.
stigmatized and often considered ineffective by the general public (Corrigan, 2004). 1.1. Adherence and stigma Many researchers contend that stigma might be a potentially important factor contributing to non-adherence to antipsychotics (Lacro et al., 2002; Sajatovic and Jenkins, 2007; Velligan et al., 2009). Non-adherence leads to increased hospitalization, higher health care costs and is a predictor of poor outcome related to relapse rates (Haddad et al., 2014), progressive brain damage (van Haren et al., 2007), suicide (Velligan et al., 2009) and overall mortality (Tiihonen et al., 2011). International treatment guidelines recommend long term treatment with antipsychotics in schizophrenia (Velligan et al., 2009), thus underlining the importance of identifying potential predictors of medication non-adherence (Kane et al., 2013). A clinical assumption is that both patient experienced discrimination and anticipated stigma increase non-adherence since negative attitudes, shame and social withdrawal can cause failure to access health care. Stigma was identified as an important barrier
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to adherence in a recent qualitative study (Teferra et al., 2013). Patients, especially those who had improved, did not want to be seen in the company of mental health staff. In a small qualitative study about one-third reported that antipsychotic medication was linked to stigma and self-esteem (Tranulis et al., 2011). Some of the participants in that study related that the likelihood of adherence would have been larger if they early on had been honestly informed that the need for medication might be life-long. Patients in an earlier pilot study considered that the stigma of taking antipsychotics was the main barrier to adherence (Hudson et al., 2004). Others found that patients with employment had a more negative drug attitude and ran an increased risk of non-adherence, possibly connected to the stigma of having to take antipsychotics to function, and the drawback of simultaneously suffering from debilitating side effects (Freudenreich et al., 2004; Hofer et al., 2002). Another study found that the drug attitude of the patient was a predictor of adherence (Brain et al., 2013), but the association between stigma and adherence has not previously been formally assessed using quantitative methods. Fear of stigma connected to the diagnosis and being prescribed antipsychotics and fear of rejection due to revealing psychotic symptoms have been suggested to further increase non-adherence to both psychiatric and physical treatment (Freudenreich et al., 2004; Goff et al., 2010; Thornicroft, 2008). In a qualitative study patients reported that the stigma of taking antipsychotics caused them to hide their medication from others and to take it only in privacy (Jenkins and Carpenter-Song, 2009). Stigma has been shown to be associated with unfair treatment in several areas of life of individuals with mental illness (Sartorius and Schulze, 2005; Corker et al., 2014). However, most previous stigma studies are descriptive surveys covering attitudes of the general public. Few studies systematically assess the behavioral aspects and the actual experience and/or anticipation of stigma and discrimination, or the clinical context of the person diagnosed with schizophrenia (Thornicroft et al., 2009). 1.2. Electronic monitoring of adherence Various subjective and objective measures have been used to assess non-adherence and a wide variety of non-adherence rates have been reported, from an objectively measured non-adherence rate of 27% (Brain et al., 2013) to a subjectively measured nonadherence of 0% (Byerly et al., 2005). In a review a mean range of non-adherence between 20% and 89% was found depending on population studied and methodology used (Lacro et al., 2002). When defining adherence as Z 80% of prescribed dosages correctly taken, adherence rates between 86% (Velligan et al., 2007) and 8% (Yang et al., 2012) have been reported. Very few studies have used validated stigma scales (Brohan et al., 2013) and studies that combine psychometrically validated stigma measures and objective monitoring of adherence are lacking. To our knowledge no previous studies have explored the association between patient-experienced stigma and discrimination and objectively monitored non-adherence. The aims were to quantify the level of stigma experiences by persons with schizophrenia and to test for an association between stigma and adherence to antipsychotics.
2. Methods 2.1. Procedure The study Cognition, Adherence and Stigma in Schizophrenia (COAST) was carried out between October 2008 and June 2011 at eight psychiatric outpatient units at the Sahlgrenska University Hospital in Gothenburg, Sweden. The COAST study was designed to investigate predictors of medication adherence (Brain et al.,
2013) and to compare different methods for the measurement of adherence (Brain et al., 2014). This paper reports predetermined analyses of the level of stigma and discrimination and of stigma as a predictor of adherence. In all analyses we measured adherence to antipsychotics over 12 months in a large cohort of outpatients with schizophrenia using the Medication Event Monitoring System ([MEMSs], Aprex Corporation, Fremont, CA, USA), which is considered the reference standard (Velligan et al., 2006). An initial power analysis was performed in advance (Power and Precision) for sample size calculation. The COAST study was approved by the regional ethics committee in Gothenburg (No. 148-08).
2.2. Subjects Psychiatrists and clinical staff were asked to identify patients fulfilling the study criteria. The research psychiatrist (CB), together with one of the two trained study nurses (BS, KA), fully informed the patients about the study protocol and monitoring procedures and written informed consents were obtained. Of the first 250 identified patients, 131 accepted participation and gave a written informed consent. However, 14 of these declined to use the MEMSs bottle. A further five did not provide stigma data and one gave incomplete responses leaving a total cohort of 111 persons for this study. Inclusion criteria were as follows: age 18–65, a prescription of unsupervised oral antipsychotics and a clinical diagnosis of schizophrenia or schizophrenia-like psychosis by the treating psychiatrist according to DSM-IV. The term “schizophrenia-like” was used in cases where the psychiatrists described psychopathology in accordance with DSM-IV criteria for schizophrenia without having formally made the diagnosis. Schizoaffective disorders were not included due to frequent diagnostic difficulties differentiating them from bipolar disorders in the clinic. Exclusion criteria were as follows: hospitalization for substance abuse in the year preceding the study, acute risk of suicide, severely intellectually challenged with learning difficulties leading to special educational needs, need for an interpreter, dispensation of antipsychotics by pillbox and treatment with long-acting injectable antipsychotics.
2.3. Instruments The Discrimination and Stigma Scale (DISC 12) (Brohan et al., 2013; Thornicroft et al., 2009) was translated into Swedish and back translated. A focus group of six persons with a clinical diagnosis of schizophrenia who were not enrolled in the study ensured that the terminology was well adapted to Swedish language and context. The DISC was administered by the research psychiatrist at the 12 month endpoint visit to assess the patients' past experiences of stigma since the first appearance of a mental health problem. The 32 items were scored on a 4-point scale and anchored at 0 (not at all) to 3 (a lot). A not-applicable category was included for questions not relevant to the patient, such as in relation to having children. The respondents were provided with a rating guide sheet with available choices to increase reliability in accordance with DISC rating instructions. The four DISC subscales were as follows: patient experienced discrimination (Item 1–21), anticipated discrimination (Item 22–25), overcoming stigma (Item 26: “Have you made friends with people who don't use mental health services?”, and item 27: “Have you been able to use your personal skills or abilities in coping with stigma and discrimination?”), and positive treatment due to the mental illness (Item 28– 32). Discrimination was defined as unfair treatment and unjust distinction in how different people are being treated by others (Thornicroft et al., 2009). The anticipated discrimination subscale (four items) refers to the extent to which the patients limit their involvement in important aspects of daily life, such as intimate relationships and work, because of anticipation that stigma might occur. Subscale mean scores were calculated by summing the rating (0–3) for each item and then divided by the number of applicable items the individual had responded to (Thornicroft et al., 2009). For frequency reports of the DISC items a rating of Z 1 (i.e. a little or more) was used to define endorsed discrimination. The same research psychiatrist rated symptom level and other clinical characteristics at baseline and endpoint. The severity of psychopathology was evaluated with the Positive and Negative Syndrome Scale for Schizophrenia (PANSS) (Kay et al., 1987) and insight with the PANSS item G12. Eight items derived from the PANSS were dichotomized ( r 3 or 43) and used to identify cases in symptomatic remission in accordance with the Structured Clinical Interview for Symptoms of Remission (SCI-SR) (Andreasen et al., 2005). The time criterion of 6 months could not be assessed. Psychosocial function was evaluated using the Personal and Social Performance Scale (PSP) (Morosini et al., 2000) and the Global Assessment of Functioning (GAF) (Endicott et al., 1976). Both GAF and PSP are 100-point rating scales, where higher scores indicate better functioning. The PSP scale measures functioning in four areas of life (self-care, social activities, personal and social relations, disturbing and aggressive behavior). Severity of the psychotic disorder was rated on a 7-point scale (1 ¼ normal, 7¼extremely ill) using the Clinical Global Impression scale-Severity of illness (CGI-S) (Guy, 1976). To assess attitude, experience and beliefs about antipsychotics the 10-item self-report Drug Attitude Inventory (DAI-10) was used (Hogan et al., 1983). Scores ranged from 10 (very poor attitude) to þ 10 (best possible attitude). Data regarding current and historical substance and alcohol abuse was retrieved from medical records.
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2.4. Monitoring of adherence As previously described in detail (Brain et al., 2014) the study nurse monitored and filled the MEMSs bottles at baseline and at approximately 2 month intervals for a year (no refill at final monitoring). Separate bottles were employed for patients prescribed several antipsychotics. Other concomitant medication was not MEMS© monitored. Patients were instructed to take their antipsychotics as prescribed by their psychiatrists. In three cases the patients' psychiatrists converted the treatment to long acting injectables during the monitoring period and these patients were regarded as non-adherent for the purpose of this study. The MEMS© has a medication bottle cap equipped with a microprocessor that records the occurrence and time of each bottle opening. MEMSs adherence was defined as the number of days which the patient took at least the prescribed dose divided by the number of prescribed days. The possible range of this continuous measure was 0.00–1.00. A value of 1.00 was given when the number of bottle openings exceeded the prescribed. In cases with more than one bottle, the MEMSs adherence measure for the bottle with the lowest adherence was used. Calculations of adherence were made for every calendar day with a cut-off at midnight. The mean of six adherence measurements across the 1-year study period was calculated. Mean adherence was then dichotomized into two categories, defined as adherent ( 40.80) vs. non-adherent (Remington et al., 2007). Two patients discontinued MEMSs monitoring during the study period and were rated as non-adherent as their adherence was below 0.80 for the duration of the registered monitoring. They were included in the analyses using a last-valuecarried-forward procedure. Five patients were hospitalized during the study period and only one of these was rated as adherent based on case records and data from the MEMSs registration period prior to hospitalization. 2.5. Statistical methods Group comparisons were carried out using Student's t-test for continuous variables. Chi-square test was used for categorical variables. Spearman's rank correlation coefficient was employed to estimate the correlation between variables. Univariate logistic regression analyses (n¼ 111) were performed to estimate associations between DISC mean subscale scores and MEMSs non-adherence. In a second step multivariate logistic regression models were fitted for each DISC subscale mean score, adjusted for DAI-10 and PSP. The latter two were included as we have previously shown that drug attitude (DAI-10) and psychosocial function (PSP) are associated with nonadherence after analyzing a broad range of candidate factors (Brain et al., 2013). Due to the relatively small number of non-adherent patients we limited the number of confounders to two. All measures included in the analyses were from the endpoint rating. Multicollinearity was tested for in the multivariate models using the Variance inflation factor (VIF). A VIF-value of 2.5 or higher was used as a cut-off indicating problematic multicollinearity. R 3.0.1. and IBM SPSS 21.0 were used for all analyses.
3. Results 3.1. Drop-out analysis The 20 drop-outs who had initially accepted participation did not differ from the 111 patients with both stigma and adherence data in terms of age, gender or education. However they had greater total and general symptom severity; PANSS total: drop-outs¼68.0 vs. included¼60.1, p¼0.022; PANSS general: drop-outs¼ 32.0 vs. included¼29.7, p¼0.021), but did not differ in positive or negative symptom burden (PANSS positive: drop-outs¼16.5 vs. included¼ 14.1, p¼ 0.051; PANSS negative: drop-outs¼18.5 vs. included¼ 16.3, p¼ 0.097). No differences in terms of psychosocial function (PSP) were observed between dropouts and participants (42.3 vs. 47.2, p¼ 0.067); the same was the case for GAF: (41.6 vs. 45.1; p¼0.139).
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Table 1 Demographic and clinical characteristics of patients at baseline: the COAST study. Total (n ¼111) Gender (male/female), n Age, years Education, years n ( r12/ 412) Marital status, n (%) Single Married Partnership Living situation, n (%) Independent Custodial care Institution Employment, n (%) Regular Supported/sheltered/volunteer No employment Sick-leave, disability retirement First generation antipsychotics, n (%) Substance and alcohol abuse, n (%) Duration of illness, years n (%) 0–5 6–10 11–15 4 15 Duration of untreated psychosis, years n (%) 0 1–4 5–10 4 10 Exacerbations, n (%) 1–2 3–5 6–9 49 Diagnosis (DSM-IV), n (%) Paranoid schizophrenia Undifferentiated schizophrenia Residual schizophrenia Delusional disorder Psychotic disorder NOS Symptom and function ratings PANSS, total Judgment and insighta SCI-SR, n (%) DAI-10 PSP GAF CGI-S Discrimination and Stigma Scaleb Experienced discrimination Anticipated discrimination Overcoming stigma Positive treatment
70/41 45.8 (11.1) 48/63 97 (87.4) 4 (3.6) 10 (9.0) 63 (56.8) 33 (29.7) 15 (13.5) 16 19 76 93 15 36
(14.4) (17.1) (68.5) (83.8) (13.5) (32.4)
13 19 17 62
(11.7) (17.1) (15.3) (55.9)
51 33 16 11
(45.9) (29.7) (14.4) (9.9)
14 33 24 40
(12.6) (29.7) (21.6) (36.0)
18 48 10 9 26
(16.2) (43.2) (9.0) (8.1) (23.4)
60.1 3.7 60 5.1 47.2 45.1 2.8
(13.2) (1.1) (54.1) (3.9) (11.0) (10.1) (0.9)
0.7 1.4 1.1 0.3
(0.4) (0.7) (0.8) (0.3)
Values denote mean (standard deviation) if not specified otherwise. PANSS ¼ Positive and Negative Syndrome Scale. a Judgment and insight ¼ PANSS G12; SCI-SR ¼ The Structured Clinical Interview for Symptoms of Remission; DAI¼Drug Attitude Inventory 10 Items; PSP ¼Personal and Social Performance Scale; GAF ¼Global Assessment of Functioning; CGI-S ¼Clinical Global Impression-Severity. b Administered at endpoint.
3.2. Sociodemographics 3.3. Reported stigma Demographic and clinical characteristics of the study cohort at baseline are shown in Table 1. Mean duration of illness was 19.5 years defined as the time from the first documentation of psychotic symptoms in the medical files until study inclusion. More than half of the patients had at least six previous psychotic exacerbations. Mean duration of untreated psychosis (DUP) was 3.4 years and was defined as the time from the first documentation of psychotic symptoms in the medical files until registered onset of antipsychotic treatment.
Of the 111 included patients the proportions with a rating of “a little”, “moderate” or “a lot” (Z 1) per DISC subscale were as follows: experienced discrimination 31.5% (n¼35), anticipated discrimination 64.8% (n¼72), overcoming stigma 63.1% (n¼ 70), and positive treatment 5.4% (n¼ 6). The mean DISC subscale scores (SD) are shown in Table 1. Proportions of applicable/valid DISC item responses are shown in Fig. 1. The highest proportions of experienced discrimination and unfair treatment on the single item level
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were reported within the area of social relationships. The majority (71%) experienced discrimination in keeping or making friends, or felt discriminated by their neighbors (69%). Almost two-thirds (62%) of the respondents reported having been avoided because of their mental health problems. Half (50%) of the patients had experienced discrimination by mental health care staff and more than one-third (36%) had been treated unfairly when seeking medical attention for physical health issues. Due to anticipated stigma and discrimination most patients had concealed their mental health problem (88%) and avoided close relationships (70%). About half of the respondents did not apply for work (51%) or education (43%) for fear of unjust treatment because of their mental illness. Most patients (78%) claimed to have at least some personal strategy and skill to overcome and cope with stigma. Positive treatment by the next-of-kin, because of the patient's mental illness, was experienced by 51%. The experienced and anticipated discrimination subscales were positively correlated (rho ¼0.503; po0.001), while anticipated discrimination was observed to be inversely associated with overcoming stigma (rho¼ 0.365; po001). Moderate correlations were observed between PSP and anticipated discrimination (rho¼0.311; p¼0.001) and PSP and overcoming stigma (rho¼0.487; po0.001). The correlation between DAI-10 and overcoming stigma (rho¼0.242; p¼0.010) was also moderate. No other correlation between independent variables reached significance. No changes in these findings were observed when reanalyzing the DISC subscales in sensitivity analyses employing categorical subscale variables (any subscale item scored Z2) (data not shown). 3.4. Association with adherence As previously reported (Brain et al., 2013), non-adherence (MEMSs monitored adherencer0.80) was observed in 30 cases (27.3%) and there was no significant fluctuation of mean adherence over the study period (Brain et al., 2014). In univariate logistic
regression models including all 111 study participants (Table 2), neither experienced nor anticipated discrimination was associated with non-adherence. An inverse association was shown between overcoming stigma and non-adherence. No association was observed between positive treatment and non-adherence. After adjusting the logistic regression models for DAI-10 and PSP, none of the DISC subscale mean scores reached significance in association with non-adherence in the multivariate model (Table 2).
4. Discussion 4.1. Findings We employed an objective measure of adherence and a validated stigma scale to examine the association between adherence to antipsychotics and experiences of stigma and discrimination in schizophrenia. In this study a high proportion of the patients reported at least some experienced and anticipated discrimination, especially within the field of social and intimate relationships. Overcoming stigma was associated with adherence in univariate analysis, but none of the DISC mean subscale scores were associated with adherence in adjusted models where psychosocial function and drug attitude were taken into consideration. Together with the regular monitorings and the heightened focus on medication, as in any adherence study, the inclusion criteria might have introduced a selection bias towards more adherent patients agreeing to take part in this year-long research study, leaving a rather small non-adherent sub-group to be studied. This may have affected the power of the study to identify an association between stigma and non-adherence. More than half of the respondents had felt shunned and socially excluded. Even if a majority of the patients reported that they had at least some skills to overcome stigma and
Fig. 1. Proportions of DISC items. N refers to applicable/valid item responses. ED ¼experienced discrimination subscale; AD ¼anticipated discrimination subscale; OS ¼ overcoming stigma subscale; P ¼ positive treatment subscale; MHP ¼ mental health problem; MHS ¼ mental health service.
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Table 2 Univariate and multivariate logistic regression models predicting MEMSs nonadherence by mean DISC subscale scores of the Discrimination and Stigma Scale. Univariate
Multivariate
Variable
OR
CI (95%)
p-Value OR
CI (95%)
p-Value
Experienced discrimination Anticipated discrimination Overcoming stigma Positive treatment
1.05 1.37 0.50 0.33
0.41–2.68 0.78–2.39 0.28–0.91 0.08–1.45
0.926 0.276 0.024 0.141
0.18–1.69 0.45–1.68 0.39–1.65 0.96–2.32
0.294 0.669 0.552 0.354
0.55 0.87 0.80 0.47
Multivariate regression models were adjusted for drug attitude (Drug Attitude Inventory 10 Items, DAI-10) and psychosocial function (Personal and Social Performance Scale, PSP).
discrimination the most common coping strategy seemed to be avoidance. Almost all inhibited themselves by concealing the diagnosis, avoiding close relationships or not applying for work or studies due to fear of discrimination. This ostensible coping strategy can be an obstacle in patient centered rehabilitation, where social integration is considered to be central for both work and family life. In the clinic social withdrawal also makes psycho education of patient and family more difficult. Furthermore, openness regarding the mental disorder and the treatment might be hard to achieve. Positive treatment was acknowledged by 58.6% (mean subscale score Z 0), a proportion not unlike that reported in a recent British study using the same instrument (Brohan et al., 2013). Positive treatment may be over reported as patients only being treated with civility may interpret this as an advantageous treatment due to negative expectations (Brohan et al., 2013; Rose et al., 2011). On the other hand, routine incivility or social caution might not be discriminatory even if easily interpreted as such. Stigmatizing attitudes and behavior have also been previously demonstrated in psychiatric and general medical staff (Brohan et al., 2013; Stuart et al., 2012; Thornicroft, 2006). In our study one-third felt discriminated when seeking physical health care and approximately half of the patients felt stigmatized by mental health staff. These findings parallel those of a recent study (Brohan et al., 2013). The difficulties encountered in contact with somatic care might be partially explained by a lack of knowledge from those professional caregivers about mental illness in general or about the psychiatric diagnosis of a particular patient, as well as by fear and misinterpretation of psychiatric symptomatology. Both psychiatrists and somatic physicians alike need raised awareness about how stigmatization of the mentally ill impacts the quality of care within all disciplines of medicine (Leucht et al., 2007). Anticipated discrimination has been shown to be closely related to low self-esteem, feelings of shame and a reluctance to accept a diagnosis or medication (Thornicroft, 2006); thus it would have been expected to be associated directly with non-adherence. One reason for the lack of association found here might be that many study patients were treated with case management in a community mental health setting influenced by assertive community treatment (ACT) (Malm et al., 2014). This mode of working has previously been shown to improve adherence (Zygmunt et al., 2002) and might have increased adherence rates in our study. The role of the care delivery system and the frequency of visits have been shown to play an important role in improving adherence (Vita et al., 2012). The compensatory and facilitating active community mental health approach emphasizes empowerment of the patient and has been shown to increase psychosocial function. Adjustment and problem solving in everyday life is the basis for finding alternative strategies (Morosini et al., 2000) and may be assumed to be of use both when having to cope with stigma and taking medication. This is in line with the suggestion of a recent review that a shared discussion,
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between patients and health care professionals, about the patient's beliefs and attitudes about medication could facilitate the integration of psychopharmacology and psychological therapy and help reduce the stigma of having to medicate (Seeman and Seeman, 2012). The mean DISC subscale scores in the present study were low and not unlike those reported in a previous study involving patients with mixed diagnoses (less than a third with schizophrenia) (Brohan et al., 2013). The need to conceal the diagnosis was higher in our study (88%) than previously reported (72%) in the global INDIGO study (Thornicroft et al., 2009). This might in part be explained by the higher education level of the patients in the current study, as it has been shown that more highly educated patients prefer to conceal the diagnosis to a greater degree than those with lower education level (Ucok et al., 2012). 4.2. Limitations and strengths Several methodological considerations need to be discussed. This is a clinical study and diagnoses were made by the treating psychiatrists; research diagnoses were not determined. The DISC provides a subjective measure of the degree to which a range of everyday situations are experienced as discriminating, but the frequency of these experiences is not captured. Also, the DISC does not address the impact of discriminative experiences on the individual. Another instrument, such as the Inventory of Stigmatizing Experiences (ISE) (Stuart et al., 2008) which also measures the impact of stigmatizing experiences might yield other results. The 21-item experienced discrimination subscale of the DISC employed in the current study is almost identical to the 22-item version that was recently shown to be psychometrically robust (Brohan et al., 2013). The 4-item anticipated stigma subscale derived from the DISC 12 has not been validated; the developers now recommend an expanded version with 14 items (Gabbidon et al., 2013). The overcoming stigma subscale in our study is identical to the above mentioned study, in which DISC was psychometrically evaluated (Brohan et al., 2013), whereas two DISC items had been added to the positive treatment subscale in that study. These changes are small and unlikely to compromise general comparisons. Limitations were that MEMSs bottles cannot detect discarding of pills and that eligible patients were identified by their case managers and psychiatrists, which together with the regular monitorings could have increased adherence rates. Also, a shorter illness duration is a known risk factor for non-adherence (Lacro et al., 2002) whereas many study participants were older with a longer history of illness. Patients using pillboxes were excluded as we intended to study the extent of non-adherence without support mechanisms. Reminder functions are known to improve adherence, but not always readily available in clinical practice. A selection bias towards more adherent patients with less experiences of stigma might have been introduced. The relatively small number of non-adherent patients limited the number of confounders and additional factors in our models. Additionally, the 0.8 cutoff for adherence might not be a true reflection of clinically relevant non-adherence. Strengths of this large naturalistic study were the long observation period with an objective measure of adherence and the use of a valid and psychometrically strong measure of patient experienced stigma and discrimination. The patients were well characterized regarding demographic and clinical data. Home visits were used to reduce missing adherence data. Few participants were lost to follow-up and the same research psychiatrist performed all the clinician ratings. 4.3. Conclusions Almost two-thirds of the participants felt discriminated within the area of social relationships and half felt discriminated by
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mental health staff and in employment-related situations. Further, anticipated discrimination caused more than half of the participants to limit their activities and to conceal their diagnosis. Even though an association between stigma and adherence was not found in the current study, both phenomena profoundly affect persons with schizophrenia. Further studies are needed to investigate associations between various stigma measures and adherence in other settings.
Conflict of interest Cecilia Brain has received speaker's honoraria from AstraZeneca, Eli Lilly, Janssen Pharmaceuticals, Otsuka Pharmaceuticals, Roche, Takeda, Medivir and Lundbeck. Eva Lindström has received speaker's honoraria from Bristol-Myers Squibb, AstraZeneca, Lundbeck, Takeda, Janssen Pharmaceuticals and Eli Lilly. Tom Burns has received speaker's honoraria from Janssen Pharmaceuticals and Otsuka Pharmaceuticals and unrestricted educational support for workshops from Janssen Pharmaceuticals. Katarina Allerby has received speaker's honoraria from Eli Lilly and honoraria from AstraZeneca for the development of educational material. Birgitta Sameby has received honoraria from AstraZeneca and Janssen Pharmaceuticals for the development of educational material. All other authors have nothing to declare.
Contributors Cecilia Brain and Margda Waern designed the study and developed the protocol. Birgitta Sameby and Katarina Allerby coordinated patient recruitment and data collection. Cecilia Brain managed the literature search and carried out psychiatric examinations for all participants. Patrick Quinlan and Erik Joas undertook the statistical analyses and contributed to the interpretation of data. Cecilia Brain drafted the original manuscript. Margda Waern, Tom Burns and Eva Lindström supervised the manuscript preparation. All authors contributed to the interpretation of data, and manuscript preparation and have approved the final manuscript. Margda Waern was senior supervisor for the project.
Acknowledgments The authors wish to thank all participating patients and clinical staff, Susan Landqvist-Stockman, Pia Rydell and the Psychosis Clinic at Sahlgrenska University Hospital, Gothenburg, Sweden for facilitating the study. Gunnar Edman at the Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden for statistical consultation. Graham Thornicroft and co-workers at King's College London, Health Service and Population Research Department, Institute of Psychiatry and Norman Sartorius, the Association for Improvement of the Mental Health Programmes, Geneva for kind assistance with the DISC scale. The study was supported by grants from the Swedish Research Council (Grant no. K2009-62X-21079-01-3), the Gothenburg Center for Personcentered Care, the Söderström-Königska Foundation (2008-21951, SLS-232731), Psykiatrifon;den, and the LUA/ALF agreement for biomedical research and by unrestricted investigator initiated trial Grants from Lundbeck, Eli Lilly, Janssen, and AstraZeneca. The sponsors had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; or in the decision to submit the paper for publication.
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