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

Background: Approximately 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. Methods: This 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. Results: Over 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. Conclusions: This 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.