Low awareness of clozapine-induced agranulocytosis in a mixed-method survey of 354 patients and carers

Journal article

Current preventative measures for clozapine-induced agranulocytosis (CIA) include indefinite haematological monitoring. Another safeguard against CIA is patient and carer education to identify and respond to potential symptoms of this adverse effect. Our aim was to explore how informed patients and carers are about the potential symptoms of CIA and what actions to take. An anonymous cross-sectional survey was distributed electronically to patients or family/carers prescribed clozapine across England. A mixed methods approach was used to assess how informed patients and carers are about CIA, identifying potential symptoms of CIA and the appropriate actions to take. Quantitative data were analysed using descriptive and inferential statistics, and qualitative responses were analysed thematically. A total of 354 individuals participated in the survey (310 patients and 44 unrelated family carers). Overall, 122 (35%) were aware that clozapine can cause agranulocytosis. The odds of awareness were significantly higher among carers (AOR = 2.90; 95% CI, 1.45–5.88) and lower among males (AOR = 0.60; 95% CI, 0.36–1.00), Black individuals (AOR = 0.33; 95% CI, 0.17–0.61) and individuals in the other ethnicity group (AOR = 0.39; 95% CI, 0.16–0.89). Among those who reported CIA awareness, 45 (37%) participants could name at least one of the signs or symptoms of CIA. A typology of responses to experiencing signs or symptoms of CIA were derived from the thematic analysis, categorised into seeking immediate medical attention (two subthemes), consulting healthcare professionals (four subthemes), uncertainty or lack of knowledge (two subthemes), involvement of family or care providers (two subthemes), self-care (three subthemes) and reluctance to seek help (two subthemes). Our results indicate that most patients and carers are unaware of CIA. There is a need to better inform patients and carers about CIA, about how to identify symptoms and the importance of consulting their treating clinician when suspicions arise. This is particularly important if calls for reduced haematological monitoring are implemented.

Authors: Oloyede, E; Nettey, V; Dzahini, O; Silva, E; Majkic, N

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: Nature Research
• Journal: Schizophrenia
• Volume: 11
• Issue: 1
• Article number: 129
• Publication date: 2025-10-30
• Acceptance date: 2025-06-11
• DOI: 10.1038/s41537-025-00639-5
• EISSN: 2754-6993
• ISSN: 2754-6993
• Language: English