“I haven’t been diagnosed, but I should be”: Insight into self-diagnoses of common mental health disorders (Preprint)

BACKGROUND In recent years, social media has become a rich source of mental health data. However, there is a lack of research on the accuracy and validity of self-reported diagnostic information online. OBJECTIVE An analysis of the degree of correspondence between self-reported diagnoses and clinical indicators will afford researchers and clinicians higher levels of trust in social media analysis. We hypothesized that self-reported diagnoses would correspond to validated disorder-specific severity questionnaires across two large online samples. METHODS Study 1 participants were 1123 adults from a national Qualtrics panel (mean age= 34.65, SD= 12.56; 56.65% female). Study 2 participants were 2237 college students from a large university in the Midwest (mean age= 19.75, SD= 2.75; 75.25% female). All participants completed an online survey about their mental health, social media use, and demographic information. Additionally, participants reported on whether they had ever been diagnosed with a series of disorders, with the option of selecting “Yes”; “No, but I should be”; “I don’t know,” and “No” for each condition. We conducted a series of analysis of variance (ANOVA) tests to determine whether there were differences between each of the four diagnostic groups and used post-hoc Tukey tests to examine the nature of the differences. RESULTS In Study 1, for self-reported mania (F(3, 1097)=2.75,P=.04) somatic symptom disorder (F(3, 1060)=26.75,P< .001) and alcohol use disorder F(3, 1097)=77.73,P< .001), the pattern of mean differences did not suggest that individuals are accurate in their insight to diagnoses. In Study 2, for all disorders but bipolar disorder (F(3, 659)=1.43,P= .23), ANOVA results were consistent with our expectations. Across both studies and for most conditions assessed, individuals who say they have been diagnosed with a disorder had the highest severity scores on self-report questionnaires, but that is closely followed by individuals who have not been diagnosed but believe they should be diagnosed. This was especially true for depression, generalized anxiety, and insomnia. For mania and bipolar disorder, questionnaire scores did not differentiate individuals who had been diagnosed from those who had not. CONCLUSIONS In general, if an individual believes they should be diagnosed with a disorder, they are experiencing a degree of psychopathology similar to those who have already been diagnosed. Self-reported diagnoses correspond well with symptom severity on a continuum and can be trusted as clinical indicators, especially in common internalizing disorders like depression and generalized anxiety disorder. Researchers can put more faith into patient self-report, including those that occur in online experiments such as social media posts, when individuals report diagnoses of depression and anxiety disorders. Replication and further study is recommended.