Treatment effectiveness and tolerability outcomes that are most important to individuals with bipolar and unipolar depression

•An online survey was conducted with 896 participants with bipolar and unipolar depression.•The minority of respondents reported current treatment being completely effective.•Decreased anxiety, agitation and irritability were the most important subjective signs of improvement.•Weight gain was the adverse effect that most commonly led respondents to discontinue a medication.•Some identified factors are inadequately assessed by current standard clinical trial outcome measures. To evaluate patient-reported determinants of treatment effectiveness and tolerability amongst persons with major depressive or bipolar disorders. The Depression and Bipolar Support Alliance (DBSA) conducted an online survey February 2016–April 2016 asking participants about which outcomes are most important in determining subjective treatment effectiveness and tolerability. In total, 896 participants completed the survey [49.9% unipolar depression (n = 447) and 50.1% bipolar depression (n = 449)]. Survey respondents reported several previous medication trials with the minority (25% of depression and 29% of bipolar group) of respondents reporting that their current treatment plan was completely effective. When asked how they know that the treatment is working, for both groups, the highest rated response was, “I don't feel overly anxious, agitated or irritable.” Weight gain was the adverse effect that most commonly led respondents to discontinue a medication. Lethargy, emotional blunting, shaking/trembling and anxiety were also identified as common treatment-emergent experiences leading to medication discontinuation in greater than one-third of respondents. The bipolar group more frequently identified several signs that suggested treatment was working (e.g., improved neurocognitive function, improved sleep), as well as more frequently reported several reasons to discontinue medications (e.g., weight gain, trembling). Numerous factors emerged as important to patients when evaluating treatment effectiveness and tolerability. Some of these factors are inadequately assessed by current standard clinical trial outcome measures. Considering these important patient-centred outcomes in future clinical trials, treatment guidelines and direct patient care may serve to improve patient satisfaction, quality of life and the therapeutic alliance.