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

A Novel Resource for Patient Advocacy

McLawhorn, Justin M.; Balamurugan, Appathurai; Gardner, Jerad M.; Kaley, Jennifer R.; George, Masil J.

Journal of the Dermatology Nurses' Association: March/April 2019 - Volume 11 - Issue 2 - p 79–83
doi: 10.1097/JDN.0000000000000459

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.

Justin M. McLawhorn, MD, Department of Dermatology, College of Medicine, University of Oklahoma Health Sciences Center, Oklahoma City, OK.

Appathurai Balamurugan, MD, DrPH, MPH, Arkansas Department of Health; Department of Family and Preventive Medicine, UAMS College of Medicine; and Department of Epidemiology, UAMS College of Public Health, Little Rock, AR.

Jerad M. Gardner, MD, Department of Pathology, UAMS College of Medicine, Little Rock, AR.

Jennifer R. Kaley, MD, Department of Pathology, UAMS College of Medicine, Little Rock, AR.

Masil J. George, MD, Department of Geriatrics, UAMS College of Medicine, Little Rock, AR.

The authors declare no conflict of interest.

Correspondence concerning this article should be addressed to Justin M. McLawhorn, MD, 619 NE 13th Street, Oklahoma City, OK 73104. E-mail:

Copyright © 2019 by the Dermatology Nurses' Association.