Understanding treatment non-adherence in schizophrenia and bipolar disorder: a survey of what service users do and why

Abstract

BackgroundApproximately half of service users with schizophrenia or bipolar disorder do not fully follow treatment recommendations. Studies of adherence have not adequately explored the frequency, consequences and meanings of non-adherence behaviours from service users’ perspectives. This study contributes to a more fine-grained understanding of treatment choices and the support service users require in order to maximise benefit from their medications.MethodsThis was a mixed-methods questionnaire study, employing quantitative and thematic qualitative analyses. Thirty-five individuals with a diagnosis of, and receiving psycho-pharmaceutical treatment for, schizophrenia or bipolar disorder answered online or telephone questions about whether, how, and why they deviated from their treatment recommendations, and what support they currently and would like to receive.ResultsOver half of participants identified themselves as being non-adherent, however when asked in detail about intentional and unintentional adherence, 77% reported deviating from treatment recommendations. Critically, 29% were non-adherent and satisfied with being so. Service users’ satisfaction with their support was positively correlated with satisfaction with their medication. Participants’ made treatment choices in order to live well. Both side-effects and symptoms could be obstacles to adherence, but feeling well also impacted on participants’ treatment choices. Treatment choices were often made in the context of living well day-to-day, and did not necessarily take into account longer-term effects of non-adherence. Participants wanted more information about their medications, better emotional support (including better access to psychological therapies) and stability in their relationships with health professionals.ConclusionsThis study suggests that non-adherence, both intentional and unintentional, is common amongst individuals with diagnoses of schizophrenia and bipolar disorder, and that this often occurs without health professionals’ knowledge or support. Treatment choices reflect a desire to live well, but are often driven by short-term needs. Given access to more information, and importantly to emotional support, service users could be helped to make treatment choices that adequately reflect the long-term risks of non-adherence, as well as allowing them to live well day-to-day. More research is required better to understand the meanings and complexities of service users’ treatment choices.

Treatment-adherence in bipolar disorder: A patient-centred approach

“…All kinds of negative attitudes have been found in these studies though the commonest ones appear to be fear of side effects and harm caused by medications[17,19,37,51,75,97], denial of severity of illness and the need for treatment[11,41,46,86,98,99], the negative impact of long-term medications on daily routines and competing priorities of life[37,85,86,98,100,101], perceived ineffectiveness of medications[19,51,69,46,98,102], fears regarding dependence, being controlled or stigmatized by taking medications[35,37,60,75,103], and missing the pleasure experienced during manic episodes because of the mood-controlling effects of medications[37,44,101,104,105]. On the other hand, some patients perceive medications to be helpful and seem to realize the necessity of taking medications to prevent relapses, hospitalizations and other negative consequences[11,69,79,98,106,107]. Attitudes towards medications among patients might be relatively independent of their demographic and clinical characteristics[50,51,108,109], or they might differ according to age and illness-related factors such as the severity of the illness and its course, comorbid substance use and side effects of medications[85,100,110-113].…”

“…Empathy, compassion and skilful counselling are much valued by patients and positively associated with adherence in BD[120,123]. This bi-directional communication also forms the vehicle for imparting information about the illness and its treatment since patients frequently express the need for such information[75,106,122]. Moreover, information can be used to effectively dispel incorrect beliefs about medications, reduce feelings of stigma and foster positive attitudes to treatment among patients[50,114].…”

Transtorno bipolar em crianças e adolescentes: critérios para diagnóstico e revisão de intervenções psicossociais

“…Para diversos autores (e.g., Geddes & Miklowitz, 2013;Gibson et al, 2013;Miklowitz et al, 2014;Reinares, Sanchéz-Moreno, & Fountoulakis, 2013), estes componentes favorecem a melhor aceitação do tratamento e/ou a adaptação ao transtorno pelo paciente e pela sua família. Todos os estudos revisados utilizaram estes componentes nas intervenções e demonstram sua importância também para atendimento de crianças e adolescentes.…”

Second Generation Long-acting Injectable Antipsychotics as a First-line Treatment of First Episode Schizophrenia:“Lights”and“Shadows”

“…The most common are the lack of insight, the sensation of a subjective distress as a result of side effects, the fear of potential side effects and the poor medication efficacy with symptoms' persistence [9]. However, above all, one of the main factor associated with non-adherence may be the wrong belief that treatment is no longer needed after few weeks or months, especially (and paradoxically) in presence of a perceived improvement [10]. Furthermore, the comorbidity with substance abuse, the lack of a familiar and social effective support, the failure of therapeutic alliance, the complexity of some treatment regimens and, last but not least, the perceived stigma that is still associated with psychiatric disorders and antipsychotic treatment, may further contribute to non-adherence [11].…”