Antipsychotics “As Needed”: An Understudied but Widespread Self-Managed Medication Use Pattern

Many people take their medication less frequently than prescribed, but rates of nonadherence are higher for antipsychotics than for other medication classes (1). Researchers have attempted to characterize motivations for antipsychotic nonadherence, such as unacceptable adverse effects or unsatisfactory effectiveness (2). These studies usually dichotomize patients into “adherent” and “nonadherent” groups according to the percentage of prescribed doses taken, sometimes adding a third “partially adherent” category for patients with some arbitrary intermediate rate (3). Such a classification establishes one way of characterizing medication use, wherein greater adherence is typically considered more helpful.

We want to highlight an incommensurate kind of medication use pattern that we observed in a recent large international survey (W.H., principal investigator) of more than 6,000 adults who had ever attempted to discontinue antipsychotic medication (4). The study was initiated by patient-led consultation in community support groups and informed by a crowdsourced internet questionnaire circulated to 102 patient respondents, who broadly favored simple measurement scales with extensive opportunity for written responses. The survey was translated into English, Spanish, Portuguese, Danish, Dutch, Japanese, Hebrew, Polish, Slovenian, French, and Italian, with translations contracted with bilingual master’s-level health professionals. Recruitment occurred through local and national mental health agencies, professional networks, social media, e-mail lists, and through patient, professional, and family organizations.

In this survey, we found that 28% of respondents (N=1,071 of 3,886) reported having taken antipsychotics intermittently on a nondaily “as needed” basis. This prevalence remained quite consistent however we subdivided the sample (e.g., 30% of people with a self-reported schizophrenia diagnosis [N=142 of 474], 28% of people with a schizophrenia or schizoaffective diagnosis [N=216 of 768], and 29% of people with a psychosis spectrum diagnosis, including bipolar disorder with psychotic features [N=392 of 1,361]). In addition, of the 3,016 survey respondents who were still sometimes experiencing ongoing psychosis-like symptoms, 13% (N=395) were currently using antipsychotics on this “as needed” (PRN) basis to manage their experience.

We are aware of only one previous publication that has reported on this phenomenon of self-managed PRN antipsychotic use: a 1987 study by Harding et al. (5) found that 75% of participants with a schizophrenia diagnosis reported taking their antipsychotic medication as prescribed; however, the authors noted that one-third of that 75% “eventually told” field interviewers that they were taking medication only when they had active symptoms. We wonder whether participants in other studies similarly do not spontaneously volunteer this pattern of proactive “as needed” antipsychotic use.

People take medication in many ways and for many reasons. The use of antipsychotics other than prescribed may variously be the result of forgetfulness or ambivalence, or it may be a proactive coping strategy. These kinds of “nonadherence” are likely very different from one another.

Future studies should investigate self-managed PRN antipsychotic use to more accurately disambiguate medication strategies that are not sufficiently captured by the term “nonadherence.” Such work could improve understanding of this widespread patient-directed method of coping with symptoms, measure the outcomes of such strategies, and illuminate possible prescription approaches best suited to patient needs.