Subjectively Experienced Benefits and Harms of Antipsychotics According to Users’ Firsthand Accounts on the Internet

Abstract

This study used an analytic framework emphasizing psychotropic drugs’ subjectively experienced psychoactive properties to reframe the helpfulness and burden of antipsychotics’ effects and impacts on users’ lives. Methods: User-reported effects of aripiprazole, lurasidone, and quetiapine within 819 user reviews on two popular websites (WebMD, Ask a Patient) were examined within the drug-centered model of drug action, cited in the literature as an alternative to the conventional disease-centered model. Independent coders used QDA Miner Version 4.1.22 to code 16 physical, mental, and emotional effects, layered with codes indicating the desirability and burden of effects from users’ perspectives. Results: Most (70%) users were female, 57.5% reported taking the reviewed antipsychotic for less than 6 months, most commonly (69.1%) for a mood disorder. Antipsychotics’ benefits included improved mood stability (14.4%) and depression (13.6%); worsened anxiety/agitation was the most frequent harm (15.3%). One quarter of undesirable effects were extremely burdensome. Aripiprazole and lurasidone demonstrated activating effects, with lurasidone users reporting the highest rates of akathisia (19.5%) and worsened anxiety (19.1%). Quetiapine’s sedating effects were often helpful (28.1%) but also produced excessive sleepiness (33.3%) and poor concentration/memory (13.9%). Users appear to subjectively experience antipsychotics’ overall activating or sedating effects as a mixture of interconnected desirable and undesirable changes occurring along a continuum of burden. Conclusions and Implications for Practice: Subjective experiences of users should be central to assessing the benefits and harms of antipsychotic drugs. Reconceptualizing the role of medications in recovery is likely needed in light of mixed and variable firsthand treatment experiences.