Vitiligo Quality of Life (QoL)
Although not life threatening, vitiligo may considerably reduce patients' health-related Quality of Life (QoL) and psychological well-being.
What is Quality-of-Life (QoL)? It’s what matters most to the patient. It’s the patient’s perception of the disease, how it affects their mental, physical, social, and romantic state. It represents how the patient feels about the quality, effectiveness, and aggressiveness of their treatment. It is how the patient feels about the quality of care they are receiving. It is also whether their healthcare provider is sympathetic and understanding to the patient’s needs.
As vitiligo causes little or no direct physical impairment, it is often considered a cosmetic problem. However, appearance of skin can condition an individual's self-image, and have negative psychological consequences, including a major impact on Quality of Life. Many vitiligo patients feel distressed and stigmatized by their condition. Additionally, many healthcare professionals still regard vitiligo as a harmless cosmetic skin problem, truly underestimating the importance of treating these patients. Large movements by 3rd party organizations and leading medical doctors are trying to promote awareness, personal and social acceptance, and progressive medical treatments. These groups stress the need to include Quality of Life assessments in the evaluation of patients' disease.
Patients often develop negative feelings about their skin condition, which tend to be reinforced due to the social stigma associated with vitiligo. Most patients of vitiligo report feelings of embarrassment, which can lead to low self-esteem and social isolation. Clin Exp Dermatol 1993, 18:393-395. PubMed Abstract.. Approximately 75% of patients with vitiligo find their appearance moderately to severely intolerable. Salzer BA, Schallreuter KU. Dermatology 190,109-115 (1995). Additionally, the chronic nature of the disease, the long term treatment often required, and it's unpredictability, usually acts to further demoralize and depress suffering patients. The psychological components of this disease are closely correlated with a patients' quality of life.
Quality of life in female patients has shown to be more impaired than men and was equal to the impairment caused by psoriasis. Ongenae K, Van Geel N, De Schepper S, Naeyaert, Br. J. Dermatol.152,1165-1172 (2005). Additionally, many patients experience a negative impact on their sexual relationships, with the main cause being feelings of embarrassment and fear of revealing their body. Porter JR, Beuf AH, Lerner AB, Nordlund JJ. J. Am. Acad. Dermatol.22,221-222 (1990). Patients older than 40 years old, with moderate/severe vitiligo, or with localized patches clearly visible, have been shown to have lower QoL (on both functioning and emotional scales as it relates to the Dermatology of Life Quality Index). F. Sampogna, D. Raskovic,* L. Guerra,† C. Pedicelli,‡ S. Tabolli, L. Leoni, L. Alessandroni and D. Abeni, Health Services Research Unit The British Journal of Dermatology. 2008;159(2):351-359
In one Quality of Life (QoL) study, patients with vitiligo reported a higher prevalence of both alexithymia (a state of deficiency in understanding, processing, or describing emotions) and depression or anxiety than the general population. In white populations, the prevalences of depression and alexithymia are both estimated as approximately 10%, while in this study the prevalence was 39%, and of patients with alexithymia 24%. The association of QoL impairment with psychological problems was very strong, and remained significant when also simultaneously taking into account gender, age, clinical severity, family history and localization of vitiligo. F. Sampogna, D. Raskovic,* L. Guerra,† C. Pedicelli,‡ S. Tabolli, L. Leoni, L. Alessandroni and D. Abeni, Health Services Research Unit The British Journal of Dermatology. 2008;159(2):351-359
The Dermatology Life Quality Index (DLQI) questionnaire is a standard 10 question dermatology form to gauge general perspective on a patient's quality of life. It is a widely used questionnaire internationally and has been used in countless studies as a quantitative measurement tool for patients with vitiligo. For clinicians, the DLQI can be used as a routine tool to assist consultation, evaluation and clinical decision-making processes.
Often times, the emotional aspect of diseases like vitiligo is gravely underestimated because clinicians fail to include the psychological and sociological components that are so closely tied to this disease. Clinicians and patients can use this or other health assessment index tools as a more effective way of gauging treatment options to improve patients quality of life. The DLQI is calculated by summing the score of each question resulting in a maximum of 30 and a minimum of 0. The higher the score, the more quality of life is impaired. The DLQI can also be expressed as a percentage of the maximum possible score of 30. Click here to view a sample of the DLQI.
One QoL study found that the mental health in vitiligo patients is poor and it is strongly associated with their quality of life. Patients with higher DLQI scores (meaning lower QoL) responded less favorably to a given therapeutic modality, illustrating even more the importance of improving quality of life in these patients. Akrem Jalel Ecole Supérieure des Sciences et Techniques de la Santé de Tunis. BP 176 Bab-Souika 1006 Tunis Tunisia, 2009, Indian Journal of Dermatology
With more effective treatment options and a closer patient/ physician relationship, patients can improve their quality of life and overall well-being. Before beginning on a specific treatment course, both patient and healthcare provider should be aware of patient's current QoL and monitor it closely throughout the course of a treatment regimen.