But side-effects drive non-adherence.

SAN DIEGO—Almost all persons diagnosed with schizophrenia who responded to an online survey (92%) said antipsychotic drugs improved their symptoms, and two-thirds said they needed the drugs, but only half (51%) said the drugs “did more good than harm.”

Those findings, which emerged from 200 responses to an online survey conducted from Dec. 14, 2018 to Jan. 15, 2019, were reported here at Psych Congress 2019 by Leona Bessonova, PhD, Director of Health Economics and Outcomes Research for Alkermes, Inc., of Waltham, Massachusetts, who conducted the study along with researchers from University Hospitals in Cleveland and the University of Texas Medical Center in San Antonio.

In an interview with BreakingMED, Bessonova said the driving force behind the survey was a desire to incorporate real patient experience into data that would be useful for clinicians treating these individuals.

The researchers noted that it is widely recognized that despite their proven efficacy, oral antipsychotic medications have a number of side-effects, including weight gain and drowsiness, that are barriers to adherence. Their goal in conducting the survey was to quantify the impact of those side-effects on social function, including ability to work or attend school.

Entry criteria included being under the care of a mental health professional and taking at least one oral antipsychotic medication. Two hundred eligible participants completed the survey: 50% were women and most — 68% — were white. Likewise, two thirds had at least some college. Exclusion criteria included hospitalization for psychiatric care in the previous 3 months.

Time from diagnosis of schizophrenia ranged from less than a year (13.5%) to 10 years or longer (44.5%). That time span, Bessonova said, mirrors “what we know about this patient population.”

She noted, however, that time from diagnosis has not been factored into analysis of the data, so it is unknown if perception of drug benefit or side-effects differ by length of time on medication.

At the time of the survey, 93.5% were currently taking an oral antipsychotic drug, but 56% reported having stopped taking an oral antipsychotic at some point, and 46% said they had stopped without agreement of their mental health clinical professional. Side-effects were cited as the most common reason for stopping a medication — with or without the agreement of one’s mental health clinical professional — and were reported by more than half the participants.

Among the findings:

  • 88% reported feeling anxious taking oral antipsychotic medications.
  • 86% said the drugs made them drowsy.
  • 85% reported difficulty concentrating when taking the drugs.

When asked what side-effects were extremely bothersome, 29% said weight gain and 33% listed sexual dysfunction.

“Eighty-one percent to 91% of the respondents said the drugs impacted their social functioning,” Bessonova said. “Between 33-57% of participants reported feeling embarrassment due to oral antipsychotic side effects, with 50% indicating feeling embarrassment about weight gain.”

But when asked to rate the intensity of the drug-associated limitations, the responses ranged from very minor to “a great deal.”

For example, asked how taking an antipsychotic drug limited the ability to perform paid or unpaid work in the previous year, 14% said not at all or very little while 28% said “somewhat,” 22% said “quite a bit,” and 23% said “a great deal.”

Asked about limitations on social function, the range again went from not at all (9%) to 24% who said, “a great deal.”

And, queried about medications interfering in romantic relationships, the responses worked out this way: not at all (18%); very little (9%); somewhat (26%); quite a bit (19%); and a great deal (28%)

The participants were also asked about their preferences for a “hypothetical new oral antipsychotic” — how would they like to balance improved efficacy versus side-effects — which produced some interesting trade-offs. For example, 22% said they would be willing to put up with slightly worse side effects for “large improvements in symptoms;” but 45% they would opt for a small improvement in symptom control and no change in side-effects. One in four chose “No change in symptoms, but small improvement in side effects” and just 9% voted for “Slightly worse symptoms, but large improvement in side effects.”

The survey suffered the limitations common to online sampling: self-reported eligibility criteria without external verification; all participants were culled from online panels that may not be representative of the general schizophrenia population; self-reported data are likely subject to recall bias; and the possibility that symptoms were misclassified.

Nonetheless, the authors concluded the “data provide valuable information from the perspective of individuals with schizophrenia about oral [antipsychotic] treatment experiences.”


The study was funded by Alkermes.

Written by Peggy Peck, Editor-in-Chief, BreakingMED, is a service of @Point of Care, LLC, which provides daily medical news reports curated to serve the unique needs of busy physicians and other healthcare professionals.