The Subjective Experience of Psychiatric Medication Users Is Central to Benefit-to-Harm Assessment and Treatment Decision-Making (WITHDRAWN)

Background and Purpose: The benefits and harms of psychotropic drugs are conventionally studied and understood with the assumption that drugs target or correct a biological abnormality that causes mental illness. This has been called the disease-centered model of drug action, and has been contrasted with a drug-centered model that holds an entirely different set of assumptions about how therapeutic benefits of drugs are achieved. Rather than a putative disease state, the drug-centered model acknowledges the psychoactive properties of psychiatric medications to alter mood, thinking, and behavior in more or less desirable ways. The purpose of the present study is to examine what benefits and harms of antipsychotic medications are reported across first-hand experiences of users and to illustrate quantitative and qualitative differences in the assessment of antipsychotics’ effects from a disease-centered versus a drug-centered framework.

Methods: Aripiprazole (Abilify) and quetiapine (Seroquel) are two of the most commonly prescribed antipsychotics, together accounting for 70% of all promotional spending in the antipsychotic market. Lurasidone (Latuda) is new to the antipsychotic market, positioning itself as a major competitor to aripiprazole for bipolar depression.  User reviews from 2011-2014 for all three antipsychotics were copied from two websites (webmd; askapatient) into QDA Miner 4.1.22 software. Reported physical, mental, and emotional effects were coded (n=819) and layered with additional codes indicating the desirability and burden of effects from users’ perspectives. Inter-coder agreement on a random subsample was assessed. Results are presented using frequencies, user excerpts, and multidimensional scaling concept maps.

Results: Benefits of antipsychotics included improved mood stability (14.4%) and depression (13.6%), while worsened anxiety/agitation was the most frequent harm (15.3%). Undesirable effects were common; 26.4% were extremely high burden. 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%), poor concentration/memory (13.9%), and zombie-like states (10.2%).  Helpful aspects of drugs’ activating or sedating effects, respectively, were linked on concept maps to their undesirable/unpleasant effects. Short-term clinical studies relying on a disease-centered model of drug action report considerably lower rates of adverse events and milder adverse events than observed in the present sample, particularly in regards to the newest antipsychotic drug to market, lurasidone.

Conclusions: Antipsychotic users experience overall activating or sedating effects as a mixture of inter-connected, subjective desirable and undesirable changes occurring along a continuum of burden. This contrasts with targeted symptom checklists and simple frequency estimates of discrete adverse effects found in clinical research relying on a disease-centered model of drug action. Social workers can contribute to advancing the safety and effectiveness of psychotropic medications by eliciting the subjective experience of clients who use psychiatric medication. The subjective experiences of users should play a central role in formulating the benefits and harms of psychotropic drugs and making treatment decisions, and social workers can advocate to this end on behalf of clients who feel disempowered to voice their experiences to treatment professionals.