BACKGROUND: Vitiligo has a special significance in Indian patients both because depigmentation is obvious on darker skin and the enormous stigma associated with the disease in the culture. AIMS: This study was carried out to determine the beliefs about causation, aspects of the disease that cause concern, medical, and psychosocial needs of the patients, expectation from treatment and from the treating physician, and effects of disease on the patient's life. METHODS: Semi-structured interviews were conducted in 50 patients with vitiligo. Purposive sampling was used to select subjects for the study. Each interview was recorded on an audio-cassette and transcripts were analyzed to identify significant issues and concerns. RESULTS: Patients had a range of concerns regarding their disease such as physical appearance, progression of white patches onto exposed skin and the whole body, ostracism, social restriction, dietary restrictions, difficulty in getting jobs, and they considered it to be a significant barrier to getting married. The condition was perceived to be a serious illness. Stigma and suicidal ideation was reported. While there were several misconceptions about the cause of vitiligo, most patients did not think their disease was contagious, heritable or related to leprosy. Multiple medical consultations were frequent. Complete repigmentation was strongly desired, but a lesser degree of repigmentation was acceptable if progression of disease could be arrested. The problems were perceived to be more severe in women. The disease imposed a significant financial burden. CONCLUSION: Addressing psychosocial factors is an important aspect of the management of vitiligo, particularly in patients from communities where the disease is greatly stigmatizing.
BACKGROUND: Vitiligo has a special significance in Indian patients both because depigmentation is obvious on darker skin and the enormous stigma associated with the disease in the culture. AIMS: This study was carried out to determine the beliefs about causation, aspects of the disease that cause concern, medical, and psychosocial needs of the patients, expectation from treatment and from the treating physician, and effects of disease on the patient's life. METHODS: Semi-structured interviews were conducted in 50 patients with vitiligo. Purposive sampling was used to select subjects for the study. Each interview was recorded on an audio-cassette and transcripts were analyzed to identify significant issues and concerns. RESULTS:Patients had a range of concerns regarding their disease such as physical appearance, progression of white patches onto exposed skin and the whole body, ostracism, social restriction, dietary restrictions, difficulty in getting jobs, and they considered it to be a significant barrier to getting married. The condition was perceived to be a serious illness. Stigma and suicidal ideation was reported. While there were several misconceptions about the cause of vitiligo, most patients did not think their disease was contagious, heritable or related to leprosy. Multiple medical consultations were frequent. Complete repigmentation was strongly desired, but a lesser degree of repigmentation was acceptable if progression of disease could be arrested. The problems were perceived to be more severe in women. The disease imposed a significant financial burden. CONCLUSION: Addressing psychosocial factors is an important aspect of the management of vitiligo, particularly in patients from communities where the disease is greatly stigmatizing.