Patient and caregivers perspective about clozapine: A systematic review

Background: Clozapine is a gold standard treatment for treatment-resistant schizophrenia. However, the patients' and caregivers' perception and their experience with clozapine has remained much less explored. Aim: To review the available literature on the patients' and caregivers' attitudes, perceptions, and experiences with clozapine. Methodology: 27 original research and review articles published in PubMed-indexed journals till March 2023 in the English language, exploring the patient and/or caregiver/family member's experience with using clozapine, were included. Results: 30-80 %of patients and 92-100 % of caregivers were found to have a positive attitude towards clozapine in terms of its impact on psychopathology, cognitive and social functioning of the patient, and caregiving needs. Most patients and caregivers also found that the positive effects of clozapine outweighed the side effects and distress related to repeated blood testing. However, a lack of satisfaction was noted among both patients and caregivers regarding the knowledge provided to them regarding clozapine, especially regarding its common adverse effects. Discontinuation of clozapine was found to be more commonly done by the patients' accord rather than clinicians, and the perceived side effects like hypersalivation and excessive sedation emerge as important factors that lead to discontinuation rather than the need for repeated blood testing. Conclusions: Overall, patients and their caregivers share a positive attitude towards clozapine and perceive it to be an effective and beneficial drug, but more effort needs to be directed by the clinical teams to educate the users of clozapine regarding its complete side effect profile and provide continuous guidance about dealing with the emerging side effects throughout treatment.