Using Social Media to Assess Mental Health and Quality of Care Among Patients With Darier Disease

Abstract

Darier disease (DD) is a rare skin condition that has been associated with debilitating mood disorders. This is the first study on patients with DD to investigate quality of care and prevalence of psychiatric symptoms wherein the participants were recruited through social media on the World Wide Web. The objective of this report is to assess the subjective experience of DD as it relates to symptom severity, mental health, quality of life, and interdisciplinary care management using Facebook as a means of data acquisition. We developed and distributed a survey to a Facebook DD support group entitled, “Darier’s Disease, let’s know each other!!!”. We found that a third of our patient population experienced symptoms that imparted at least a significant negative impact on their quality of life. Furthermore, most respondents were not screened for depressive symptoms by standard intake questionnaires at their dermatology office visits, despite most of these patients having previously sought mental health services for anxiety/depression/or other mood symptoms secondary to their DD manifestations. We concluded that social media support groups may be a practical tool to recruit patients and assess quality of care. Furthermore, screening for the psychodermatological aspects of DD should be routine protocol for dermatology clinic nurses and dermatologists on every clinical visit.