Qualitative analysis of long-term clozapine adherence in schizophrenia: An exploratory study

Clozapine is the most effective antipsychotic for treatment-resistant schizophrenia, yet patients face substantial challenges in maintaining long-term adherence. In this investigation, we used a qualitative approach to understand how patients overcome obstacles to clozapine use. We conducted semi-structured interviews with 14 patients at the Johns Hopkins Bayview Clozapine Clinic who had been receiving clozapine for at least one year (mean = 5.7 years). Participants reflected a diverse sample across gender (five women and nine men), self-identified race (White = 8, Black = 3, biracial = 3), and age (range 24-68 years, mean = 35.5 years). Thematic analysis identified three key themes: barriers to adherence, facilitators of adherence, and rationale for adherence. Most participants reported difficulty managing side effects of clozapine, while routine blood monitoring was generally not perceived as a significant barrier. When discussing facilitators, many participants emphasized the importance of collaborative dose titration to balance side effects and symptom control. Nearly all participants described family members as providing substantial support through medication management, transportation, and encouragement. In a novel finding, avoidance of withdrawal-like symptoms following missed doses of clozapine was a major motivator for adherence. These findings highlight the importance of individualized care plans, proactive management of side effects, and family engagement. To our knowledge, this is the first qualitative study of factors affecting long-term clozapine use. Our findings may facilitate clinician conversations with patients uncertain about clozapine initiation or continuation.