Journal of Psychiatric and Mental Health Nursing, 2014, 21, 917–923
Experiencing antipsychotic discontinuation: results from a survey of Australian consumers C. SALOMON1
RN,
B . H A M I LT O N 2
RN
3
Ph D
& S. ELSOM3 1
RN
Ph D
2
Associate Professor, Director, Centre for Psychiatric Nursing, and PhD Candidate, Senior Lecturer, Department of Nursing, School of Health Sciences, University of Melbourne, Melbourne, Vic., Australia
Keywords: communication, medication management, patient experience, psychotropic medications, user involvement Correspondence: C. Salomon Nursing Melbourne School of Health Sciences The University of Melbourne Alan Gilbert Building 161 Barry Street, Carlton Victoria 3053 Australia E-mail: [email protected] Declaration of interest: None. Accepted for publication: 04 July 2014 doi: 10.1111/jpm.12178
Accessible summary • The aim of the survey was to gain an understanding of consumer experiences of antipsychotic discontinuation. Incorporating consumer perspectives into practice may help clinicians to better understand discontinuation decisions and experiences. This topic may be of particular interest to mental health nurses who play an important role in supporting consumers with medication related decisions. • The survey highlighted that consumers often try to discontinue antipsychotic medication, frequently without the knowledge or against the advice of clinicians. Consumers who discontinued in such unsupported ways appeared more likely to stop abruptly. Abrupt cessation has been associated with a number of increased risks in the literature. Negative discontinuation symptoms such as difficulty sleeping, mood changes, problems concentrating, increased psychotic experiences and physical problems were reported by more than half of the survey participants. Many consumers reported that they did not feel adequately informed about how to most safely stop or what to expect when stopping. • These findings add new knowledge to our understanding of why consumers discontinue antipsychotics. The problems participants reported in their relationship with clinicians, in particular, helps to explain why so many consumers may stop in secret. The need to improve communication between consumers and clinicians around the common experience of antipsychotic discontinuation is highlighted. Findings also highlight the need to conduct further research into discontinuation symptoms and how clinicians might better educate and support consumers who are experiencing them. Abstract Despite high reported rates of antipsychotic non-adherence, little is known about consumer experiences during discontinuation. This study was designed to increase understanding of antipsychotic discontinuation from consumer perspectives. In 2011–2012, 98 Australian consumers involved with participating organizations completed an anonymous survey detailing past antipsychotic discontinuation attempts. Of the 88 participants who reported at least one discontinuation attempt, over half (n = 47, 54.7%) reported stopping without clinician knowledge or support. This group was 35% (confidence interval 15.4– 54.6%) more likely to stop abruptly than those (n = 41, 45.3%) stopping with clinician support (P = 0.002). Only 10 participants (23.3%) recalled being given information about discontinuation symptoms other than relapse; however, 68 participants (78.2%) reported experiencing a range of discontinuation symptoms including physical, cognitive, emotional, psychotic or sleep-related disturbances. Findings cannot be readily generalized because of sampling constraints. However, the significant number of participants who reported discontinuation symptoms, in addition to psychosis, is consistent with previous research. This study provides new insight into consumer motivations for discontinuation and possible problems in clinical communication that may contribute to frequent noncollaborative discontinuation attempts. Mental health nurses, who play a pivotal role in medication communication events, may benefit from increased awareness of consumer perspectives on this topic.
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Introduction High discontinuation rates from antipsychotic medications have consistently been reported in the literature (Voruganti et al. 2008). The Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) (Lieberman et al. 2005), for example, which included 1493 patients diagnosed with schizophrenia, found that 74% withdrew from their antipsychotic medication before the end of the 18-month trial period. Reasons for high discontinuation and switching rates include lack of efficacy, adverse effects and consumer decision to discontinue treatment (Byerly et al. 2007). Given expanding indications for antipsychotic use (Verdoux et al. 2010), the number of people across all age groups undergoing discontinuation experiences is expected to rise (Cooper et al. 2006, Ballard et al. 2009). It is essential that mental health nurses develop a strong understanding of the processes and potential impacts of antipsychotic discontinuation, given that they are often the primary contact responsible for administering and monitoring medication use (Duxbury et al. 2010). Much of the research around antipsychotic discontinuation, to date, has focused on relapse rates (Subotnik et al. 2011), as well as strategies for improving adherence (Diaz et al. 2001, Acosta et al. 2009). Other features and outcomes of discontinuation, however, have not been as well characterized. In particular, there is a marked lack of rigorous research documenting how consumers themselves experience antipsychotic discontinuation. Limited findings suggest that poor therapeutic alliance may contribute to desire to cease psychiatric medications (Roe et al. 2009). Additionally, consumers have identified information deficits around discontinuation needs and lack of support during the process [Scottish Association for Mental Health (SAMH) 2004; Read 2009]. Previous studies looked at a wide variety of psychiatric medications, however, in some cases including those for high prevalence disorders such as depression. Because different social stigmas (Corrigan 2007) and mechanisms of action (Howland 2010) have been attributed to antipsychotics, compared with other classes of psychiatric medication, it is important to explore any unique features of discontinuation from antipsychotics. The aim of this survey was to focus exclusively on consumer experiences of antipsychotic discontinuation, in an Australian context. Features of the policy and practice context of Australia include: a comprehensive public mental health sector; 15–20 years post-deinstitutionalization; and a focus on early intervention in psychosis (Australian Health Disaster Management Policy Committee 2009). Through this focus, the researchers hope to characterize contextual and actual features of discontinuation from the perspectives of those undergoing the experience. 918
Methods Measures The survey was adapted with permission from two previously tested overseas instruments: MIND UK (Read 2009) coping with coming off questionnaire and the SAMH (2004) Scottish survey of peoples experience of psychiatric drugs. The adapted survey tool was piloted before distribution to consumers via participating organizations between April 2011 and March 2012. The adapted survey comprised 25 multiple choice and short answer items. Participants were asked to recall discontinuation-related information provided by prescribers and the number of their past discontinuation attempts. They were then asked to explore the context and experience of a specific discontinuation event (either their most recent or memorable) for the remainder of the survey. Where relevant, participants were asked to identify the severity of discontinuation symptoms across emotional, cognitive, psychotic, physical and sleep-related domains. They were also asked to identify support people and strategies that were useful during this time. Participants were additionally invited to provide free-text descriptions of their experiences. Analysis of these free-text descriptions has been published elsewhere (Salomon & Hamilton 2013).
Recruitment Because of the ‘taboo’ nature of the topic being investigated, it was not possible to obtain a probability sample of the population. Literature suggests that consumers may deliberately hide the behaviour of interest because of stigmatization of antipsychotic ‘non-compliance’ (Roe et al. 2009). They may avoid discussing the topic given the provision under Australian mental health legislation for people deemed ‘non-compliant’ to be detained in mental health facilities and non-consensually re-medicated (Mcsherry & Wilson 2011). Facility/organization based non-probability sampling was therefore used in the recruitment process. This methodology is fairly standard in research with difficult-to-access populations or around taboo topics (Magnani et al. 2005, Shaghaghi et al. 2011). While clearly limiting the external validity of findings, non-probability sampling is often the only practical way to recruit ‘hidden’ participants in order to gain some insight to general trends and patterns in the group’s experience (Malekinejad et al. 2008). A deliberate attempt was made to recruit diverse consumers by using a variety of services and service types. Participating organizations included a large public © 2014 John Wiley & Sons Ltd
Antipsychotic discontinuation
metropolitan community adult mental health service, a private metropolitan community mental health service (both in Victoria), two psychiatric disability rehabilitation and support services, key state and national consumer peak body and advocacy groups, a culturally and linguistically diverse consumer reference group and a women’s information service. Organizations were requested to make the survey available to all consumers over the age of 18 who were currently or previously prescribed antipsychotics. Eligible consumers were invited to participate regardless of their diagnosis or whether or not they had ever attempted discontinuation.
Ethics and permissions The study was approved by a hospital human research ethics committee and registered with two other institutional committees. All participants gave their informed consent prior to inclusion in the study. While surveys were distributed by participating services, consumers could return them anonymously via post or email to ensure they remained confidential.
Data management and analysis It was not possible to establish a survey response rate because the survey was available on a number of organizational websites and thus viewed by an unknown number of potential participants. Also, it was not clear how many case managers actually passed the survey on to consumers. As well as bias resulting from the non-random sampling method, the sample varied from the general population in that people who were under 18 currently receiving treatment as inpatients or unable to read/write in English were all excluded from the study. Coded textual responses and grouped multiple choice responses were analysed using percentages, frequencies and 95% confidence intervals (CIs). Fisher’s exact probability test was used to identify associations between categorical variables. Reported P-values resulted from use of the twosided test. All quantitative analyses were performed using SPSS 20 (IBM Corp., Armonk, NY, USA).
Results Respondent summary statistics There were 101 surveys returned, 98 of which were valid. Respondent age ranged from 20 to 63 years, with a mean age of 42 years and a standard deviation of 11 years. There were 50 male respondents, 46 female respondents, one transgender respondent and one respondent who chose not © 2014 John Wiley & Sons Ltd
to disclose gender. Findings are grouped for reporting under the headings: prescriber communication, context for discontinuation, negative effects, support strategies and outcomes of discontinuation.
Prescriber communication and discontinuation Almost half the sample (46.9% n = 46) reported either not being given or being unsure if they were given any information about the proposed length of their antipsychotic treatment. Of those who recalled the topic being raised, 72.5% (n = 37) reported being told that they would need to take an antipsychotic indefinitely or for life. This group was just as likely to attempt to stop (P = 0.565) and to stop multiple times (P = 0.710) as those who reported being given more limited antipsychotic prescriptions time frames. Despite likely clinician perception that this group needed to remain on antipsychotics indefinitely, respondents from this group who did discontinue were statistically just as likely to remain antipsychotic free at time of survey completion, as other respondents (P = 0.669). Over half the sample (56.1%, n = 55) reported either not being given or being unsure if they were given any information about what might happen if they discontinued their antipsychotic abruptly. A little under half of respondents (43.7%, n = 38) stated that they did not believe their doctor had given them enough information about this topic. Of the clinicians that did discuss the impact of abrupt cessation, only 23.3% (n = 10) of consumers reported being informed about the possibility of discontinuation symptoms other than relapse.
Context of discontinuation events Of the 98 respondents, 88 reported stopping an antipsychotic at least once. The majority of respondents reported multiple past attempts. Roughly half of the sample (n = 47, 54%) reported between 2 and 5 past stopping attempts. There were nine participants (10.3%) who reported between 6 and 10 past attempts, and a similar number (n = 9, 10.3%) who reported 11 or more past attempts. The majority of respondents (n = 80) stopped only one antipsychotic during their selected discontinuation attempt; however, eight people reported stopping multiple antipsychotics simultaneously. The most frequently discontinued antipsychotic in the sample was olanzapine (n = 24), followed by quetiapine (n = 21), risperidone (n = 14) then clozapine (n = 7). Overwhelmingly, consumers reported that they were the ones who initiated the decision to stop (n = 61, 70.9%), and in just over half of cases (n = 47, 54.7%) participants also reported stopping without their doctors’ knowledge and/or consent. This group was 35% 919
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(CI 15.4–54.6%) more likely to stop abruptly than the group of respondents (n = 41, 45.3%) who stopped with their clinician’s knowledge and/or support (P = 0.002). The most commonly stated reason for discontinuation was adverse medication effects, although many participants listed multiple reasons (Table 1). Length of time on antipsychotics before discontinuation and recency of the attempt are summarized in Tables 2 and 3. Respondents who had been on antipsychotics for one year or longer were 23.3% (CI −1.8% to 48.5%) more likely to experience negative withdrawal effects than those (n = 28, 32.6%) that had taken antipsychotics for less than 1 year prior to discontinuation (P = 0.054).
Table 1 Reasons for stopping antipsychotics Reasons for stopping antipsychotics I didn’t like their adverse effects I didn’t like the idea of being on them long term I felt better or thing were better in my life and I didn’t need them Other reason provided They were not useful I was advised to come off them by my doctor I had only expected to be on them for a limited time Total
Frequency
Valid per cent
54 43
26.3 21.0
35
17.1
22 19 19
10.7 9.3 9.3
13
6.3
205
100%
Table 2 Length of time on antipsychotics before this stop/swap attempt Length of time
Frequency
Per cent
Valid per cent
Less than 1 month 1–5 months 6–11 months 1–5 years 6–10 years 11–19 years 20+ years Total Missing (system) Total
2 5 11 37 19 10 1 85 3 88
2.3 5.7 12.5 42.0 21.6 11.4 1.1 96.6 3.4 100.0
2.4 5.9 12.9 43.5 22.4 11.8 1.2 100.0
Table 3 Recency of last discontinuation attempt Recency of attempt
Frequency
Per cent
Valid per cent
Less than 1 year ago 1–5 years ago 6–10 years ago 11+ years ago Total Missing (system) Total
28 33 12 13 86 2 88
31.8 37.5 13.6 14.8 97.7 2.3 100.0
32.6 38.4 14.0 15.1 100.0
920
Negative effects when discontinuing A little under half of respondents (n = 36, 41.4%) reported stopping their antipsychotic abruptly. Other respondents decreased their dose over varying time periods (see Table 4). Most participants (n = 68, 78.2%) stopping an antipsychotic reported experiencing negative effects during the process. These most frequently fell into the emotional domain, followed by sleep, cognitive, psychotic and then physical domains (Table 5). Across domains, the 10 most common complaints when stopping (in descending order) were: difficulty falling or staying asleep, mood changes, increases in anxiety/agitation, increases in hallucinations/ delusions/unusual beliefs, difficulty concentrating/completing tasks, increases in paranoia, headaches, memory loss, nightmares, nausea and vomiting. Because of small sample size, only the three most common antipsychotics that respondents reported discontinuing (olanzapine, quetiapine and risperidone) were examined for associations with severe, domain-specific discontinuation syndromes. Respondents who discontinued olanzapine compared with any other medication were 35.9% (CI 3.46–68.34%) more likely to experience severe physical discontinuation syndromes (P = 0.053). Respondents who discontinued quetiapine compared with any other medication were 32.9% (CI 11.97–53.83%) less likely to experience severe psychotic discontinuation syndromes (P = 0.019) and 44% (CI 15.87–72.13%) less likely to report severe emotional problems when discontinuing (P = 0.009). No statistically significant associations between risperidone discontinuation and severe symptoms, compared with other medications, were identified in any domain.
Table 4 Time over which antipsychotics were stopped Withdrawal time
Frequency
Per cent
Valid per cent
All at once Less than 1 month 1–6 months 6+ months Not reported Total
36 24 20 7 1 88
40.9 27.3 22.7 8.0 1.1 100.0
40.9 27.3 22.7 8.0 1.1 100.0
Table 5 Domain of discontinuation symptom Domain
Frequency
Per cent
Per cent of cases
Emotional Sleep Cognitive Psychotic Physical Total
54 51 46 45 34 230
23.5 22.2 20.0 19.6 14.8 100.0
85.7 81.0 73.0 71.4 54.0 365.1
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Just over half of participants (52.4%, n = 33) reported that discontinuation symptoms resolved in 30 days or less. However, it was not clear in all cases whether this was due to recommencement of another antipsychotic agent or to natural symptom resolution.
Support strategies when stopping Participants reported the most helpful people when stopping as: psychiatrist (n = 28), friend, (n = 24) counsellor/ psychologist (n = 19) and family (n = 19). A similar number of people (n = 19) reported that no one was helpful during this period. Nursing support was identified as helpful in six cases. Most helpful activities when stopping were reported as: exercise (n = 46), relaxation/meditation (n = 35), creative activities (n = 29), and reading books and other written information about discontinuation (n = 29). A minority of participants (n = 12) reported that no activities were helpful during this period.
Outcomes of stopping At the time of survey completion, 23.9% (n = 21) of participants reported that that they had successfully remained off all antipsychotics. Over half of this subgroup reported being antipsychotic free for 3 years or longer at time of survey completion. The majority of respondents (n = 57, 53.4%) reported taking an antipsychotic at the time of survey completion, and 22.7% (n = 20) of participants did not disclose their current antipsychotic use status.
Discussion This study represents the first investigation of Australian consumer perspectives on their antipsychotic discontinuation experiences, to our knowledge. Findings corroborate previous research that has reported discontinuation syndromes when stopping antipsychotics and also raise new questions about how well clinicians are currently preparing consumers to cope with these syndromes. The consumer perspectives elicited in this survey provide new insight into the motivations behind discontinuation and problems in the therapeutic relationship that may contribute to the high reported number of unilateral and secret discontinuation attempts. Findings cannot be readily generalized because of sampling constraints that included a relatively small sample size, an unknown response rate and a possible response bias due to study self-recruitment. However, the significant number of participants in this cohort who reported discontinuation symptoms, in addition to psychotic symptoms, raises questions about the prevalence of these complaints © 2014 John Wiley & Sons Ltd
and the role they may play in the post-discontinuation clinical picture. A weakness of this study is that it did not ask participants to specify if they were simultaneously withdrawing from other classes of medications such as mood stabilizers or anticholinergic agents. It is thus possible that withdrawal effects in some people may have been caused by factors other than cessation of the antipsychotic agent (Dilsaver & Alessi 1988). Antipsychotic-mediated somatic, cognitive, sleep-related and emotional discontinuation symptoms have not been robustly documented in the literature to date (Salomon & Hamilton 2014); however, participant reports in our study are consistent with a number of previous small studies and case reports (e.g. Gardos et al. 1978; Kim & Staab 2005; Komatsu et al. 2005; Oral et al. 2006; Stonecipher et al. 2006; Urbano et al. 2007; Mendhekar & Inamdar 2010;) and literature reviews (e.g. Moncrieff 2006; Stonecipher et al. 2006). Animal modelling has additionally provided evidence for motor and autonomic symptoms associated with antipsychotic discontinuation (e.g. Stanford & Fowler 1997; Goudie et al. 2007). Given the prevalence of discontinuation attempts, and the potential impact of discontinuation syndromes on the post-discontinuation clinical picture, this body of evidence may warrant further investigation in robust epidemiological studies or randomized trials. The associations among abrupt cessation, increased length of treatment and discontinuation syndromes, reported by participants in this study, are congruent with other literature in the field. For example, Chouinard & Chouinard (2008) suggest that, among other factors, prolonged antipsychotic treatment may exacerbate incidences of supersensitivity withdrawal syndromes. The Mind UK study (Read 2009) also reported that people who had been on their medications for more than 6 months were less likely to successfully discontinue. Similarly, in relation to speed of discontinuation, it has been hypothesized (Tranter & Healy 1998) that abrupt discontinuation increases risk of potential rebound symptoms. While the physiological basis of discontinuation symptoms has not been comprehensively characterized, it is proposed that long-term antipsychotic use may lead to chronic changes in receptor numbers and sensitivity, resulting in rebound symptoms on discontinuation (Moncrieff 2006). Similarly, it is hypothesized that abrupt cessation provides less time for antipsychotic-mediated receptor changes to normalize, once again resulting in increased likelihood of rebound symptomology (Moncrieff 2006). Given the heterogeneity of antipsychotic mechanisms of action, and the hypothesis that different discontinuation symptoms may be caused by impacts on different systems (Goudie 2000), it is unsurprising that discontinuation 921
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profiles were found to differ in this cohort between some medications and across participants. The associations among increased length of treatment, abrupt cessation and likelihood of experiencing discontinuation symptoms is a pertinent reminder to clinicians to consider appropriate timing of discontinuation and to carefully monitor longterm antipsychotic users during any tapering/switch over periods. In terms of clinician information provision, a relatively high number of participants identified either being unable to recall or not receiving robust and accurate information about discontinuation. Many participants reported being told early on in treatment that they would need to take an antipsychotic for life. Current consensus treatment guidelines (Barnes 2011; Psychiatrists TRANZC 2009) acknowledge that medication use may be lifelong for some people but expect that 1–2 years after a person has achieved recovery from their first episode, they would be offered a chance to discontinue antipsychotics. For people experiencing subsequent relapses, guidelines suggest that after another stable period of 2–5 years, discontinuation may again be considered (Psychiatrists TRANZC 2009). Reasons for the discrepancy found in this study between current treatment guidelines and reported practice are unclear. However, research suggests that real-world psychiatric practice often differs from treatment recommendations (Moore et al. 2007). Clinical reluctance to support antipsychotic discontinuation may also be related to concerns about risk and liability (Westwood 2010). The association between clinician support and a gradual rather than abrupt withdrawal regime suggests that if clinicians are trusted as partners in the discontinuation attempt, they can play a key role in harm minimization during this time period. Unlike the UK Mind study (Read 2009), which reported that psychiatrists were the least helpful support people during discontinuation, in our study psychiatrists were reported to be the most helpful people with whom to consult. Given the key role mental health nurses play in medication management and psychoeducation (Duxbury et al. 2010), it is striking that only a very small number of consumers (n = 6) identified nurses as helpful during discontinuation. The survey itself did not explore the reasons
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Conclusions Respondents identified inadequate information provision regarding length of treatment and discontinuation syndromes. This finding raises questions about how clinicians, including mental health nurses, may be collaborating with consumers. In this study at least, informing consumers that they must take antipsychotics indefinitely did not decrease the likelihood of them attempting to stop once or multiple times. Conversely, findings suggest that supporting consumers when stopping may decrease clinical risks associated with abrupt discontinuation. This circumstance suggests that collaboration regarding medication decisions must go further than information provision or unilateral decision making. The study highlights the need to remain engaged with consumers and to learn more about their decision-making processes and priorities during this time period.
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‘refusal’ in mental health services. Thesis. University of Hertfordshire, Hertfordshire.
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Experiencing antipsychotic discontinuation: results from a survey of Australian consumers C. SALOMON1
RN,
B . H A M I LT O N 2
RN
3
Ph D
& S. ELSOM3 1
RN
Ph D
2
Associate Professor, Director, Centre for Psychiatric Nursing, and PhD Candidate, Senior Lecturer, Department of Nursing, School of Health Sciences, University of Melbourne, Melbourne, Vic., Australia
Keywords: communication, medication management, patient experience, psychotropic medications, user involvement Correspondence: C. Salomon Nursing Melbourne School of Health Sciences The University of Melbourne Alan Gilbert Building 161 Barry Street, Carlton Victoria 3053 Australia E-mail: [email protected] Declaration of interest: None. Accepted for publication: 04 July 2014 doi: 10.1111/jpm.12178
Accessible summary • The aim of the survey was to gain an understanding of consumer experiences of antipsychotic discontinuation. Incorporating consumer perspectives into practice may help clinicians to better understand discontinuation decisions and experiences. This topic may be of particular interest to mental health nurses who play an important role in supporting consumers with medication related decisions. • The survey highlighted that consumers often try to discontinue antipsychotic medication, frequently without the knowledge or against the advice of clinicians. Consumers who discontinued in such unsupported ways appeared more likely to stop abruptly. Abrupt cessation has been associated with a number of increased risks in the literature. Negative discontinuation symptoms such as difficulty sleeping, mood changes, problems concentrating, increased psychotic experiences and physical problems were reported by more than half of the survey participants. Many consumers reported that they did not feel adequately informed about how to most safely stop or what to expect when stopping. • These findings add new knowledge to our understanding of why consumers discontinue antipsychotics. The problems participants reported in their relationship with clinicians, in particular, helps to explain why so many consumers may stop in secret. The need to improve communication between consumers and clinicians around the common experience of antipsychotic discontinuation is highlighted. Findings also highlight the need to conduct further research into discontinuation symptoms and how clinicians might better educate and support consumers who are experiencing them. Abstract Despite high reported rates of antipsychotic non-adherence, little is known about consumer experiences during discontinuation. This study was designed to increase understanding of antipsychotic discontinuation from consumer perspectives. In 2011–2012, 98 Australian consumers involved with participating organizations completed an anonymous survey detailing past antipsychotic discontinuation attempts. Of the 88 participants who reported at least one discontinuation attempt, over half (n = 47, 54.7%) reported stopping without clinician knowledge or support. This group was 35% (confidence interval 15.4– 54.6%) more likely to stop abruptly than those (n = 41, 45.3%) stopping with clinician support (P = 0.002). Only 10 participants (23.3%) recalled being given information about discontinuation symptoms other than relapse; however, 68 participants (78.2%) reported experiencing a range of discontinuation symptoms including physical, cognitive, emotional, psychotic or sleep-related disturbances. Findings cannot be readily generalized because of sampling constraints. However, the significant number of participants who reported discontinuation symptoms, in addition to psychosis, is consistent with previous research. This study provides new insight into consumer motivations for discontinuation and possible problems in clinical communication that may contribute to frequent noncollaborative discontinuation attempts. Mental health nurses, who play a pivotal role in medication communication events, may benefit from increased awareness of consumer perspectives on this topic.
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Introduction High discontinuation rates from antipsychotic medications have consistently been reported in the literature (Voruganti et al. 2008). The Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) (Lieberman et al. 2005), for example, which included 1493 patients diagnosed with schizophrenia, found that 74% withdrew from their antipsychotic medication before the end of the 18-month trial period. Reasons for high discontinuation and switching rates include lack of efficacy, adverse effects and consumer decision to discontinue treatment (Byerly et al. 2007). Given expanding indications for antipsychotic use (Verdoux et al. 2010), the number of people across all age groups undergoing discontinuation experiences is expected to rise (Cooper et al. 2006, Ballard et al. 2009). It is essential that mental health nurses develop a strong understanding of the processes and potential impacts of antipsychotic discontinuation, given that they are often the primary contact responsible for administering and monitoring medication use (Duxbury et al. 2010). Much of the research around antipsychotic discontinuation, to date, has focused on relapse rates (Subotnik et al. 2011), as well as strategies for improving adherence (Diaz et al. 2001, Acosta et al. 2009). Other features and outcomes of discontinuation, however, have not been as well characterized. In particular, there is a marked lack of rigorous research documenting how consumers themselves experience antipsychotic discontinuation. Limited findings suggest that poor therapeutic alliance may contribute to desire to cease psychiatric medications (Roe et al. 2009). Additionally, consumers have identified information deficits around discontinuation needs and lack of support during the process [Scottish Association for Mental Health (SAMH) 2004; Read 2009]. Previous studies looked at a wide variety of psychiatric medications, however, in some cases including those for high prevalence disorders such as depression. Because different social stigmas (Corrigan 2007) and mechanisms of action (Howland 2010) have been attributed to antipsychotics, compared with other classes of psychiatric medication, it is important to explore any unique features of discontinuation from antipsychotics. The aim of this survey was to focus exclusively on consumer experiences of antipsychotic discontinuation, in an Australian context. Features of the policy and practice context of Australia include: a comprehensive public mental health sector; 15–20 years post-deinstitutionalization; and a focus on early intervention in psychosis (Australian Health Disaster Management Policy Committee 2009). Through this focus, the researchers hope to characterize contextual and actual features of discontinuation from the perspectives of those undergoing the experience. 918
Methods Measures The survey was adapted with permission from two previously tested overseas instruments: MIND UK (Read 2009) coping with coming off questionnaire and the SAMH (2004) Scottish survey of peoples experience of psychiatric drugs. The adapted survey tool was piloted before distribution to consumers via participating organizations between April 2011 and March 2012. The adapted survey comprised 25 multiple choice and short answer items. Participants were asked to recall discontinuation-related information provided by prescribers and the number of their past discontinuation attempts. They were then asked to explore the context and experience of a specific discontinuation event (either their most recent or memorable) for the remainder of the survey. Where relevant, participants were asked to identify the severity of discontinuation symptoms across emotional, cognitive, psychotic, physical and sleep-related domains. They were also asked to identify support people and strategies that were useful during this time. Participants were additionally invited to provide free-text descriptions of their experiences. Analysis of these free-text descriptions has been published elsewhere (Salomon & Hamilton 2013).
Recruitment Because of the ‘taboo’ nature of the topic being investigated, it was not possible to obtain a probability sample of the population. Literature suggests that consumers may deliberately hide the behaviour of interest because of stigmatization of antipsychotic ‘non-compliance’ (Roe et al. 2009). They may avoid discussing the topic given the provision under Australian mental health legislation for people deemed ‘non-compliant’ to be detained in mental health facilities and non-consensually re-medicated (Mcsherry & Wilson 2011). Facility/organization based non-probability sampling was therefore used in the recruitment process. This methodology is fairly standard in research with difficult-to-access populations or around taboo topics (Magnani et al. 2005, Shaghaghi et al. 2011). While clearly limiting the external validity of findings, non-probability sampling is often the only practical way to recruit ‘hidden’ participants in order to gain some insight to general trends and patterns in the group’s experience (Malekinejad et al. 2008). A deliberate attempt was made to recruit diverse consumers by using a variety of services and service types. Participating organizations included a large public © 2014 John Wiley & Sons Ltd
Antipsychotic discontinuation
metropolitan community adult mental health service, a private metropolitan community mental health service (both in Victoria), two psychiatric disability rehabilitation and support services, key state and national consumer peak body and advocacy groups, a culturally and linguistically diverse consumer reference group and a women’s information service. Organizations were requested to make the survey available to all consumers over the age of 18 who were currently or previously prescribed antipsychotics. Eligible consumers were invited to participate regardless of their diagnosis or whether or not they had ever attempted discontinuation.
Ethics and permissions The study was approved by a hospital human research ethics committee and registered with two other institutional committees. All participants gave their informed consent prior to inclusion in the study. While surveys were distributed by participating services, consumers could return them anonymously via post or email to ensure they remained confidential.
Data management and analysis It was not possible to establish a survey response rate because the survey was available on a number of organizational websites and thus viewed by an unknown number of potential participants. Also, it was not clear how many case managers actually passed the survey on to consumers. As well as bias resulting from the non-random sampling method, the sample varied from the general population in that people who were under 18 currently receiving treatment as inpatients or unable to read/write in English were all excluded from the study. Coded textual responses and grouped multiple choice responses were analysed using percentages, frequencies and 95% confidence intervals (CIs). Fisher’s exact probability test was used to identify associations between categorical variables. Reported P-values resulted from use of the twosided test. All quantitative analyses were performed using SPSS 20 (IBM Corp., Armonk, NY, USA).
Results Respondent summary statistics There were 101 surveys returned, 98 of which were valid. Respondent age ranged from 20 to 63 years, with a mean age of 42 years and a standard deviation of 11 years. There were 50 male respondents, 46 female respondents, one transgender respondent and one respondent who chose not © 2014 John Wiley & Sons Ltd
to disclose gender. Findings are grouped for reporting under the headings: prescriber communication, context for discontinuation, negative effects, support strategies and outcomes of discontinuation.
Prescriber communication and discontinuation Almost half the sample (46.9% n = 46) reported either not being given or being unsure if they were given any information about the proposed length of their antipsychotic treatment. Of those who recalled the topic being raised, 72.5% (n = 37) reported being told that they would need to take an antipsychotic indefinitely or for life. This group was just as likely to attempt to stop (P = 0.565) and to stop multiple times (P = 0.710) as those who reported being given more limited antipsychotic prescriptions time frames. Despite likely clinician perception that this group needed to remain on antipsychotics indefinitely, respondents from this group who did discontinue were statistically just as likely to remain antipsychotic free at time of survey completion, as other respondents (P = 0.669). Over half the sample (56.1%, n = 55) reported either not being given or being unsure if they were given any information about what might happen if they discontinued their antipsychotic abruptly. A little under half of respondents (43.7%, n = 38) stated that they did not believe their doctor had given them enough information about this topic. Of the clinicians that did discuss the impact of abrupt cessation, only 23.3% (n = 10) of consumers reported being informed about the possibility of discontinuation symptoms other than relapse.
Context of discontinuation events Of the 98 respondents, 88 reported stopping an antipsychotic at least once. The majority of respondents reported multiple past attempts. Roughly half of the sample (n = 47, 54%) reported between 2 and 5 past stopping attempts. There were nine participants (10.3%) who reported between 6 and 10 past attempts, and a similar number (n = 9, 10.3%) who reported 11 or more past attempts. The majority of respondents (n = 80) stopped only one antipsychotic during their selected discontinuation attempt; however, eight people reported stopping multiple antipsychotics simultaneously. The most frequently discontinued antipsychotic in the sample was olanzapine (n = 24), followed by quetiapine (n = 21), risperidone (n = 14) then clozapine (n = 7). Overwhelmingly, consumers reported that they were the ones who initiated the decision to stop (n = 61, 70.9%), and in just over half of cases (n = 47, 54.7%) participants also reported stopping without their doctors’ knowledge and/or consent. This group was 35% 919
C. Salomon et al.
(CI 15.4–54.6%) more likely to stop abruptly than the group of respondents (n = 41, 45.3%) who stopped with their clinician’s knowledge and/or support (P = 0.002). The most commonly stated reason for discontinuation was adverse medication effects, although many participants listed multiple reasons (Table 1). Length of time on antipsychotics before discontinuation and recency of the attempt are summarized in Tables 2 and 3. Respondents who had been on antipsychotics for one year or longer were 23.3% (CI −1.8% to 48.5%) more likely to experience negative withdrawal effects than those (n = 28, 32.6%) that had taken antipsychotics for less than 1 year prior to discontinuation (P = 0.054).
Table 1 Reasons for stopping antipsychotics Reasons for stopping antipsychotics I didn’t like their adverse effects I didn’t like the idea of being on them long term I felt better or thing were better in my life and I didn’t need them Other reason provided They were not useful I was advised to come off them by my doctor I had only expected to be on them for a limited time Total
Frequency
Valid per cent
54 43
26.3 21.0
35
17.1
22 19 19
10.7 9.3 9.3
13
6.3
205
100%
Table 2 Length of time on antipsychotics before this stop/swap attempt Length of time
Frequency
Per cent
Valid per cent
Less than 1 month 1–5 months 6–11 months 1–5 years 6–10 years 11–19 years 20+ years Total Missing (system) Total
2 5 11 37 19 10 1 85 3 88
2.3 5.7 12.5 42.0 21.6 11.4 1.1 96.6 3.4 100.0
2.4 5.9 12.9 43.5 22.4 11.8 1.2 100.0
Table 3 Recency of last discontinuation attempt Recency of attempt
Frequency
Per cent
Valid per cent
Less than 1 year ago 1–5 years ago 6–10 years ago 11+ years ago Total Missing (system) Total
28 33 12 13 86 2 88
31.8 37.5 13.6 14.8 97.7 2.3 100.0
32.6 38.4 14.0 15.1 100.0
920
Negative effects when discontinuing A little under half of respondents (n = 36, 41.4%) reported stopping their antipsychotic abruptly. Other respondents decreased their dose over varying time periods (see Table 4). Most participants (n = 68, 78.2%) stopping an antipsychotic reported experiencing negative effects during the process. These most frequently fell into the emotional domain, followed by sleep, cognitive, psychotic and then physical domains (Table 5). Across domains, the 10 most common complaints when stopping (in descending order) were: difficulty falling or staying asleep, mood changes, increases in anxiety/agitation, increases in hallucinations/ delusions/unusual beliefs, difficulty concentrating/completing tasks, increases in paranoia, headaches, memory loss, nightmares, nausea and vomiting. Because of small sample size, only the three most common antipsychotics that respondents reported discontinuing (olanzapine, quetiapine and risperidone) were examined for associations with severe, domain-specific discontinuation syndromes. Respondents who discontinued olanzapine compared with any other medication were 35.9% (CI 3.46–68.34%) more likely to experience severe physical discontinuation syndromes (P = 0.053). Respondents who discontinued quetiapine compared with any other medication were 32.9% (CI 11.97–53.83%) less likely to experience severe psychotic discontinuation syndromes (P = 0.019) and 44% (CI 15.87–72.13%) less likely to report severe emotional problems when discontinuing (P = 0.009). No statistically significant associations between risperidone discontinuation and severe symptoms, compared with other medications, were identified in any domain.
Table 4 Time over which antipsychotics were stopped Withdrawal time
Frequency
Per cent
Valid per cent
All at once Less than 1 month 1–6 months 6+ months Not reported Total
36 24 20 7 1 88
40.9 27.3 22.7 8.0 1.1 100.0
40.9 27.3 22.7 8.0 1.1 100.0
Table 5 Domain of discontinuation symptom Domain
Frequency
Per cent
Per cent of cases
Emotional Sleep Cognitive Psychotic Physical Total
54 51 46 45 34 230
23.5 22.2 20.0 19.6 14.8 100.0
85.7 81.0 73.0 71.4 54.0 365.1
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Just over half of participants (52.4%, n = 33) reported that discontinuation symptoms resolved in 30 days or less. However, it was not clear in all cases whether this was due to recommencement of another antipsychotic agent or to natural symptom resolution.
Support strategies when stopping Participants reported the most helpful people when stopping as: psychiatrist (n = 28), friend, (n = 24) counsellor/ psychologist (n = 19) and family (n = 19). A similar number of people (n = 19) reported that no one was helpful during this period. Nursing support was identified as helpful in six cases. Most helpful activities when stopping were reported as: exercise (n = 46), relaxation/meditation (n = 35), creative activities (n = 29), and reading books and other written information about discontinuation (n = 29). A minority of participants (n = 12) reported that no activities were helpful during this period.
Outcomes of stopping At the time of survey completion, 23.9% (n = 21) of participants reported that that they had successfully remained off all antipsychotics. Over half of this subgroup reported being antipsychotic free for 3 years or longer at time of survey completion. The majority of respondents (n = 57, 53.4%) reported taking an antipsychotic at the time of survey completion, and 22.7% (n = 20) of participants did not disclose their current antipsychotic use status.
Discussion This study represents the first investigation of Australian consumer perspectives on their antipsychotic discontinuation experiences, to our knowledge. Findings corroborate previous research that has reported discontinuation syndromes when stopping antipsychotics and also raise new questions about how well clinicians are currently preparing consumers to cope with these syndromes. The consumer perspectives elicited in this survey provide new insight into the motivations behind discontinuation and problems in the therapeutic relationship that may contribute to the high reported number of unilateral and secret discontinuation attempts. Findings cannot be readily generalized because of sampling constraints that included a relatively small sample size, an unknown response rate and a possible response bias due to study self-recruitment. However, the significant number of participants in this cohort who reported discontinuation symptoms, in addition to psychotic symptoms, raises questions about the prevalence of these complaints © 2014 John Wiley & Sons Ltd
and the role they may play in the post-discontinuation clinical picture. A weakness of this study is that it did not ask participants to specify if they were simultaneously withdrawing from other classes of medications such as mood stabilizers or anticholinergic agents. It is thus possible that withdrawal effects in some people may have been caused by factors other than cessation of the antipsychotic agent (Dilsaver & Alessi 1988). Antipsychotic-mediated somatic, cognitive, sleep-related and emotional discontinuation symptoms have not been robustly documented in the literature to date (Salomon & Hamilton 2014); however, participant reports in our study are consistent with a number of previous small studies and case reports (e.g. Gardos et al. 1978; Kim & Staab 2005; Komatsu et al. 2005; Oral et al. 2006; Stonecipher et al. 2006; Urbano et al. 2007; Mendhekar & Inamdar 2010;) and literature reviews (e.g. Moncrieff 2006; Stonecipher et al. 2006). Animal modelling has additionally provided evidence for motor and autonomic symptoms associated with antipsychotic discontinuation (e.g. Stanford & Fowler 1997; Goudie et al. 2007). Given the prevalence of discontinuation attempts, and the potential impact of discontinuation syndromes on the post-discontinuation clinical picture, this body of evidence may warrant further investigation in robust epidemiological studies or randomized trials. The associations among abrupt cessation, increased length of treatment and discontinuation syndromes, reported by participants in this study, are congruent with other literature in the field. For example, Chouinard & Chouinard (2008) suggest that, among other factors, prolonged antipsychotic treatment may exacerbate incidences of supersensitivity withdrawal syndromes. The Mind UK study (Read 2009) also reported that people who had been on their medications for more than 6 months were less likely to successfully discontinue. Similarly, in relation to speed of discontinuation, it has been hypothesized (Tranter & Healy 1998) that abrupt discontinuation increases risk of potential rebound symptoms. While the physiological basis of discontinuation symptoms has not been comprehensively characterized, it is proposed that long-term antipsychotic use may lead to chronic changes in receptor numbers and sensitivity, resulting in rebound symptoms on discontinuation (Moncrieff 2006). Similarly, it is hypothesized that abrupt cessation provides less time for antipsychotic-mediated receptor changes to normalize, once again resulting in increased likelihood of rebound symptomology (Moncrieff 2006). Given the heterogeneity of antipsychotic mechanisms of action, and the hypothesis that different discontinuation symptoms may be caused by impacts on different systems (Goudie 2000), it is unsurprising that discontinuation 921
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profiles were found to differ in this cohort between some medications and across participants. The associations among increased length of treatment, abrupt cessation and likelihood of experiencing discontinuation symptoms is a pertinent reminder to clinicians to consider appropriate timing of discontinuation and to carefully monitor longterm antipsychotic users during any tapering/switch over periods. In terms of clinician information provision, a relatively high number of participants identified either being unable to recall or not receiving robust and accurate information about discontinuation. Many participants reported being told early on in treatment that they would need to take an antipsychotic for life. Current consensus treatment guidelines (Barnes 2011; Psychiatrists TRANZC 2009) acknowledge that medication use may be lifelong for some people but expect that 1–2 years after a person has achieved recovery from their first episode, they would be offered a chance to discontinue antipsychotics. For people experiencing subsequent relapses, guidelines suggest that after another stable period of 2–5 years, discontinuation may again be considered (Psychiatrists TRANZC 2009). Reasons for the discrepancy found in this study between current treatment guidelines and reported practice are unclear. However, research suggests that real-world psychiatric practice often differs from treatment recommendations (Moore et al. 2007). Clinical reluctance to support antipsychotic discontinuation may also be related to concerns about risk and liability (Westwood 2010). The association between clinician support and a gradual rather than abrupt withdrawal regime suggests that if clinicians are trusted as partners in the discontinuation attempt, they can play a key role in harm minimization during this time period. Unlike the UK Mind study (Read 2009), which reported that psychiatrists were the least helpful support people during discontinuation, in our study psychiatrists were reported to be the most helpful people with whom to consult. Given the key role mental health nurses play in medication management and psychoeducation (Duxbury et al. 2010), it is striking that only a very small number of consumers (n = 6) identified nurses as helpful during discontinuation. The survey itself did not explore the reasons
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