Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Jul 23, 2018
Date Accepted: Dec 2, 2018
(closed for review but you can still tweet)
The Patient Perspective on Cognitive Symptoms in Major Depressive Disorder: A Retrospective Database and Prospective Survey Analysis
ABSTRACT
Background:
Major depressive disorder (MDD) is a common and burdensome condition. Clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective.
Objective:
This two-part study aimed to generate data from PatientsLikeMe (PLM), an online patient network, on the perception of cognitive symptoms and how they are prioritized in MDD.
Methods:
A retrospective data analysis (Phase 1) drew data from the PLM community with self-reported MDD. Information on patient demographics, comorbidities, self-rated severity of MDD, treatment effectiveness, and specific symptoms of MDD was analyzed. A prospective electronic survey (Phase 2) was emailed to longstanding and recently active members of the PLM MDD community. Phase 1 analysis informed the objectives of the Phase 2 survey, which were to determine symptom perception and prioritization, cognitive symptoms of MDD, residual symptoms, and medication effectiveness.
Results:
In study 1 (N=17,166), cognitive symptoms were frequently reported, including “severe†difficulty concentrating (28%). Difficulty concentrating was reported even among patients with no/mild depression (80%) and patients who considered their treatment successful (17%). In a second study (N=2525), 23% (118/508) cited cognitive symptoms as a treatment priority. Cognitive symptoms correlated with depression severity, including difficulty making decisions, concentrating, and thinking clearly (rs=0.32, 0.36, and 0.34, respectively). Cognitive symptoms interfered with meaningful relationships and daily life tasks and had a profound impact on patients’ ability to work and to recover from depression.
Conclusions:
Patients acknowledge that cognitive dysfunction in MDD limits their ability to recover fully and return to a normal level of social and occupational functioning. Further clinical understanding and characterization of MDD regarding symptom prioritization and relapse risk due to residual cognitive impairment are required to help patients to return to normal cognitive function and aid their overall recovery. Clinical Trial: New England Institutional Review Board exemption number: 15-349
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