What are patients' experiences of discontinuing clozapine and how does this impact their views on subsequent treatment?

BACKGROUND: Discontinuing what is considered the most effective treatment for treatment-resistant schizophrenia may precipitate feelings of failure or a relapse of illness. Clozapine treatment is discontinued for a variety of reasons, including non-adherence, intolerance, or lack of efficacy. Patients' experiences of discontinuing the "best" treatment and the impact on perceptions of subsequent antipsychotic treatment are important in developing an understanding of the factors affecting people's treatment choices. This study is the first of its type, seeking to explore people's perspectives on clozapine discontinuation. METHOD: Semi-structured interviews with sixteen patients who had received clozapine and discontinued treatment-thirteen males and three females, age range: thirty-two to seventy-eight years old-were audio-recorded and transcribed. A modified inductive approach to analysis, based on grounded theory, was taken to identify commonalities and differences in patients' perceptions. RESULTS: The three main themes identified from participants' experiences were: (1) positive and negative effects of treatment; (2) feelings of agency, being the capacity to make decisions about treatment and act independently; (3) choice of treatment in the future. Participants exhibited agency in making choices about medication, including risking relapse, while attempting self-management of medication effects. Different participants perceived the same side effect as beneficial or intolerable. Variation in subsequent treatment choices was reported, with some participants favouring depot (long-acting) injections. A participant was frightened when not told about clozapine's side effects, which led to the participant not being engaged in future treatment decisions. Others, despite suffering serious adverse effects, retained positive perceptions of clozapine; they experienced despair at finding an effective alternative. CONCLUSIONS: Experiences with clozapine discontinuation evoked powerful emotions and resulted in clozapine being the benchmark for other treatments. Knowledge, agency, and being in control were important to participants in relation to treatment. Personal perceptions of treatments or beliefs about illness could lead to non-adherence. People value the clinician listening to their experiences to better understand their perspective, enabling concerns about medication to be addressed through true shared decision making. TRIAL REGISTRATION: NHS Health Research Authority and Health and Care Research Wales, IRAS Project ID 225753, Research Ethics Committee (REC) reference: 18/NW/0413, 25/06/2018.

Use of Acute Psychiatric Hospitalisation: A Study of the Factors Influencing Decisions to Arrange Acute Admission to Inpatient Mental Health Facilities.

Background: Human decision-making involves a complex interplay of intra- and inter-personal factors. The decisions clinicians make in practise are subject to a wide range of influences. Admission to a psychiatric hospital is a major clinical intervention, but the decision-making processes involved in admissions remain unclear. Aims: To delineate the range of factors influencing clinicians' decisions to arrange acute psychiatric admissions. Methods: We undertook six focus groups with teams centrally involved in decisions to admit patients to hospital (crisis resolution home treatment, liaison psychiatry, approved mental health practitioners and consultant psychiatrists). The data were analysed using qualitative thematic analysis. Results: Our analysis of the data show a complex range of factors influencing decision-making that were categorised as those related to: (i) clinical and risk factors; (ii) fear/threat factors; (iii) interpersonal dynamics; (iv) contextual factors. Conclusions: Decisions to arrange acute admission to hospital are not just based on an appraisal of clinical and risk-related information. Emotional, interpersonal and contextual factors are also critical in decision-making. Delineating the breadth of factors that bear on clinical decision-making can inform approaches to (i) clinical decision-making research, (ii) the training and supervision of clinicians, and (iii) service delivery models.