Quality of Life in a Vitiligo Support Group
April 2017 | Volume 16 | Issue 4 | Original Article | 344 | Copyright © April 2017
Saba Zabetian MD, Gordon Jacobson MS, Henry W. Lim MD, Melody J. Eide MD, and Richard H. Huggins MD
Vitiligo Treatment and Research Center, Department of Dermatology, Henry Ford Hospital, Detroit, MI
BACKGROUND: No study has examined the impact of vitiligo support group membership on vitiligo patient quality of life (QoL).
OBJECTIVE: We sought to examine the QoL impact of vitiligo support groups by comparing QoL and associated patient characteristics between vitiligo patients who are and are not members of a vitiligo support group.
METHODS: Members of a Henry Ford Hospital-sponsored, Southeast Michigan Vitiligo Support Group were compared to non-member vitiligo patients recruited from a previous study cohort.17 Eligible patients were asked to complete the Dermatology Life Quality Index (DLQI) and a study-specific questionnaire designed to collect relevant patient characteristics.
RESULTS: The mean DLQI scores for the support group members and non-members were similar (7.1 ± 5.4 and 6.0 ± 6.5, respectively; P-value 0.2), despite the support group members reporting more severe overall disease and increased disease severity in exposed portions of the body. The African-American: Caucasian ratio and the prevalence of unemployment were both significantly higher among the support group participants.
Limitations: Small sample size may have limited the study’s ability to demonstrate the differences between the support group participants and the controls.
CONCLUSIONS: The similar QoL despite an increased prevalence of poorer QoL indicators among the support group participants suggests a protective effect of support group membership.
J Drugs Dermatol. 2017;16(4):344-350.
Vitiligo is an aquired, idiopathic skin disorder that results from a loss of functional melanocytes from the involved skin.1-4 It is characterized by circumscribed depigmented macules and patches, frequently localized to periorificial areas and locations on the body that are subject to mild, chronic trauma.1-4 Frequently exposed skin areas including the face, dorsal hands, and feet are common locations of involvement.1-4 It is estimated that 0.5-2% of the general population is affected by vitiligo worldwide.5 Although generally not considered life-threatening or typically associated with intense physical symptoms, living with vitiligo can be very distressing due to its chronic course, freqently progressive and episodic natural history, potential cosmetic disfigurement, and perceived stigma.2-5 Patients with vitiligo often experience substantial impairment in their quality of life (QoL).6-8 Vitiligo patients have greater difficulties with depression and anxiety as compared to the general population, with 30% of patients reporting increased psychological morbidity.3,7,9,10 Patients with vitiligo not only report embarrassment and low self-esteem at work and social settings, but also report negative effect on their sexual and romantic relationships.3,11-16 Thus far, few studies have highlighted the role of supportive therapy in improving the QoL of vitiligo patients.2,3 However, no study to date has examined the QoL impact of vitiligo support group membership. The goal of this study was to examine the QoL impact of vitiligo support group participation by comparing vitiligo patients who are and are not members of a vitiligo support group.
This case-comparison study was conducted between January and April 2012 at the Henry Ford Hospital (HFH) Department of Dermatology in Detroit, Michigan. The HFH dermatology department hosts a bimonthly vitiligo support group, the Southeast Michigan Vitiligo Support Group (facebook.com/MI.vitiligo), for individuals affected by the disease. One of the investigators, (RHH), is the leader for this group. The support group is open to anyone who is interested in learning more about vitiligo or simply seeking a supportive environment, regardless of whether they receive care from HFH. Membership in the support group is voluntary, without any associated dues. The study was approved by the Henry Ford Health System (HFHS) Institutional Review Board. Informed consent was obtained from all participants. Vitiligo patients who were unable to speak or read English and/or who were mentally and/or physically unable to complete the study questionnaires were excluded.
Adult members (age ≥18 years) of the Southeast Michigan Vitiligo Support Group (study support group) who had attended