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. 2025 Sep 9:19:2821-2834.
doi: 10.2147/PPA.S466742. eCollection 2025.

Quantifying the Tolerability of Antipsychotic Treatment-Related Side Effects in Schizophrenia: A Survey Study of Patients and Caregiver Proxies

Melissa Culhane Maravic  1 , Kelly Birch  1 , Anh Thy H Nguyen  1 , Alicia Subasinghe  2 , Elizabeth Stafford  3 , Christopher Zacker  2
Affiliations

Quantifying the Tolerability of Antipsychotic Treatment-Related Side Effects in Schizophrenia: A Survey Study of Patients and Caregiver Proxies

Melissa Culhane Maravic et al. Patient Prefer Adherence. .

Abstract

Background: Antipsychotic medications are considered the mainstay of treatment for schizophrenia. However, these medications are associated with a wide range of side effects, which may be tolerated differently by patients, and may impact initiation and continuation of treatment.

Purpose: This study aimed to assess the tolerability of antipsychotic medication side effects for patients with schizophrenia and understand how side effects may impact decisions to initiate and remain in treatment.

Methods: A cross-sectional survey was conducted with 200 people living with schizophrenia and 100 caregiver proxies for those with severe disease presentation. The survey utilized the Maximum Difference Scaling (MaxDiff) approach to quantify preferences and a direct elicitation survey to rank specific side effects. Descriptive analysis and statistical analyses were conducted to address the study objectives.

Results: Results indicated that extrapyramidal side effects such as pseudoparkinsonism and tardive dyskinesia, as well as feeling detached and memory and cognitive issues were ranked as the least tolerable. In contrast, side effects such as reduced interest in/enjoyment of sex, feeling tired or drowsy, and dry mouth were perceived as more tolerable. Caregivers' perspectives closely aligned with the care recipients' rankings, with an additional particular concern for high blood sugar that may lead to diabetes. Side effects such as pseudoparkinsonism, memory and cognitive problems, and weight gain were associated with unwillingness to initiate or continue an effective antipsychotic medication.

Conclusion: These findings highlight the importance of considering side effect profiles when selecting and discussing treatment options with patients. Side effects can potentially impact patients' willingness to start or switch medications, therefore, prescribing decisions should take into consideration patients' tolerance for potential adverse effects. Engaging patients and caregivers in treatment decisions can enhance shared decision-making and treatment satisfaction. Healthcare providers should consider these findings when prescribing antipsychotic medications to people living with schizophrenia.

Keywords: MaxDiff; caregiving; direct elicitation; quantifying preferences; treatment initiation; treatment tolerability.

Plain language summary

Schizophrenia is a disease that disrupts a person’s thought processes, perceptions, emotional responsiveness, and social interactions. Individuals living with schizophrenia generally require continuous psychiatric care, drug treatment, and other support services throughout their lives. Antipsychotic medications can help reduce symptoms of psychosis and psychiatric hospitalizations and can improve daily functioning. However, antipsychotics have a wide range of side effects, which makes regularly taking the medication less desirable. This study found that medications used for schizophrenia are highly bothersome, and people who take these medications may view side effects as a barrier to staying consistent with treatment. Side effects like having symptoms that imitate Parkinson’s disease, problems with feeling detached from one’s surroundings, problems with memory and cognition, and significant weight gain are of most concern to people living with schizophrenia. New antipsychotic treatments with minimal side effects would likely be well received by patients and may increase consistent treatment.

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Conflict of interest statement

MCM and AHN are employees of Precision AQ, a consulting firm awarded funding by Cerevel Therapeutics to conduct this study. KB is a former employee of Precision AQ. MCM owns equity interest in Precision Medicine Group, the parent company of Precision AQ. CZ and AS are employees of Cerevel Therapeutics who provided funding for this study. At the time of this research, ES was an employee of the National Alliance on Mental Illness (NAMI), which has received research funding from Cerevel Therapeutics. The authors report no other conflicts of interest in this work.

Figures

Figure 1
Figure 1
Example MaxDiff choice set.
Figure 2
Figure 2
MaxDiff results of overall tolerability of treatment-related side effects.
Figure 3
Figure 3
Results from direct elicitation on treatment-related side effect tolerability.
Figure 4
Figure 4
(A) Reported willingness to start an antipsychotic medication that may cause low-tolerability side effects. (B) Reported desire to switch medications if low-tolerability side effects were experienced.
Figure 5
Figure 5
Results from caregiver perspectives on treatment-related side effect tolerability.
See this image and copyright information in PMC

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