[Quality of life, disease burden and healthcare need of patients with vitiligo]. / Lebensqualität, Krankheitslast und Versorgungsbedarf von Patienten mit Vitiligo.

BACKGROUND: With a prevalence of 0.5-2%, vitiligo is one of the most common skin disorders worldwide with loss of pigment. The skin disease has a disfiguring, often stigmatising character and is often associated with psychosocial distress. OBJECTIVE: To provide an overview of the psychosocial impairment, disease burden and resulting health care needs of patients with vitiligo. MATERIALS AND METHODS: Narrative review based on a literature search in PubMed for the years 1996-2022 on disease burden, quality of life and stigmatization is provided. RESULTS: The search yielded 175 relevant original papers including clinical studies, meta-analyses and systematic reviews (n = 65) for the search period. A large number of studies document that vitiligo is associated with considerable psychosocial stress and relevant losses in quality of life. Problem areas particularly concern stigmatisation, sexual dysfunction, anxiety, reduced self-esteem and problems at work. The observed increased levels of anxiety and depression correlate with the severity and activity of vitiligo. Often, comorbidity also contributes to reduced self-esteem and social isolation. These factors determine a high need for care in a relevant proportion of those affected. CONCLUSION: Vitiligo is not primarily a cosmetic problem, but a disease requiring treatment according to the World Health Organisation's definition of health as physical, mental and social well-being. The benefits of treatment options are to be measured by their effects on patient-reported outcomes.

Quality of life assessment in childhood vitiligo in a tertiary care center in India.

The impact of vitiligo on quality of life (QOL) of children is not well studied. In this cross-sectional study, QOL in the form of Children's Dermatology Life Quality Index (CDLQI) was assessed in 114 children with vitiligo over a year. The mean CDLQI was 2.72 ± 3.35. There was a significant correlation of body surface area involved with the DLQI and the impairment was higher in older children. The psychosocial burden of vitiligo in children cannot be ignored and must be tackled early on in order to prevent an ever lasting impact on young minds.

A Systematic Review on Prevalence and Assessment of Sexual Dysfunction in Vitiligo.

OBJECTIVE: Vitiligo is a common depigmenting disorder with significant psychosocial consequences. Vitiligo has been associated with psychological disorders such as depression, low self-esteem, anxiety, and sexual dysfunction (SD). In recent years, there is an increase in the number of studies looking into the impact of vitiligo on sexual functions. This systematic review investigates the assessment and prevalence of SD in vitiligo patients. MATERIALS AND METHODS: We carried out a systematic search for observational studies on the prevalence of SD in vitiligo patients. The Preferred Reporting Items for Systematic Reviews and Meta-Analyzes (PRISMA) guidelines were used to prepare this systematic review. We searched PubMed, Scopus, Google Scholar, and the Cochrane Library databases. RESULTS: We observed 308 studies for screening. Finally, 12 studies that meet the eligibility criteria were included in this study. The prevalence of SD ranged from 2.7 to 82.0%. Most of the studies used the dermatology life quality index (DLQI) to assess SD. Our findings also show that vitiligo patients were more probably experience symptoms of depression and anxiety, one of the risk factors for SD. CONCLUSION: Psychological comorbidities are related to a high risk of SD in vitiligo patients. Further prospective longitudinal studies are required to investigate the causal factors for SD in vitiligo patients.

The Impact of Vitiligo on Quality of Life and Psychosocial Well-Being in a Nepalese Population.

The authors collected demographics and assessed the impact of vitiligo using Vitiligo Quality of Life (VitiQoL) and Vitiligo Impact Scale (VIS), followed by a focused survey and semistructured interviews with 22 participants in midwestern Nepal. VitiQoL and VIS scales did not indicate a large impact on quality of life; however, through interviews/focused surveys, participants expressed unhappiness/worry, problems in finding partners, securing employment, and social discrimination due to their skin lesions. These stressors are highlighted along with lack of proper physician counseling and vitiligo-related myths, which create psychosocial distress that may not be given priority in underdeveloped countries like Nepal.

Assessment and Comparison of Quality of Life in Patients with Melasma and Vitiligo.

Background Melasma is an acquired hyperpigmentary condition that is characterized by development of irregular brown to black macules occurring predominantly on the face. Vitiligo is an acquired depigmenting skin disease characterized by progressive loss of inherited skin colour, which leads to appearance of white patches. Both the conditions occur more frequently in people with racially pigmented skin resulting in psychological morbidities and impacting the quality of life. Objective To evaluate and compare the quality of life in patients suffering from melasma or vitiligo, which represent two opposite ends of pigmentary disorders using the Dermatology Life Quality Index (DLQI). Method This was a hospital based cross sectional study that was conducted at the Department of Dermatology and Venereology, Tribhuwan University Teaching Hospital from September 2016 to August 2017. The study population included adult patients of either sex with melasma or vitiligo, who consented to participate in the study. Result There were a total of 100 patients each in both melasma and vitiligo groups. While females outnumbered their male counterparts by a ratio of 9:1 in melasma, the gender distribution was more equal in vitiligo. Melasma had a mean DLQI score of 5.64 ± 5.41 and a median score of 4 while vitiligo had a mean DLQI score of 4.13 ± 3.74 and a median score of 3. Conclusion Melasma patients had a higher impairment in quality of life compared to vitiligo patients. The quality of life in both the conditions varied based on age, gender, duration and distribution.

Quality of Life, Burden of Disease, Co-morbidities, and Systemic Effects in Vitiligo Patients.

Vitiligo is a complex, systemic disease associated with many autoimmune and autoinflammatory conditions. Additionally, the cutaneous changes of vitiligo have significant effects on quality of life and self-esteem. Further efforts are needed to increase our understanding of vitiligo comorbidities as well as to increase awareness of the psychological effects of vitiligo.

Treatment adherence and beliefs about medicines among Egyptian vitiligo patients.

Vitiligo is a chronic disorder of depigmentation that has different treatment modalities, but patients' nonadherence is common. This study aimed to assess the influence of patients' medication beliefs on patients' adherence to topical, oral medications, and phototherapy in vitiligo. Between September 2015 and February 2016, 260 patients with vitiligo were asked to fill in the Beliefs about Medicines Questionnaire (BMQ) to assess their beliefs about therapy for vitiligo. Their adherence to the therapy was examined using the 8-item Morisky Medication Adherence Scale (MMAS-8). RESULTS: The MMAS-8 scale and BMQ had good internal consistency (Cronbach's α = 0.78 and 0.66, respectively). Using Morisky's recommended cutoff point, 71% of patients were categorized as low or nonadherent to the scheduled therapy. Patients who perceived specific necessity of dermatological medicines significantly adhered to their therapy (OR 1.23; 95% CI 1.09, 1.38; p = 0.001) whereas patients who had specific concerns about the adverse effects exhibited significant low adherence (OR 0.65; 95% CI 0.56, 0.76; p < 0.001). CONCLUSION: Positive beliefs about the necessity of medications in vitiligo do not necessarily reflect high adherence. Patients' adherence behavior is a multidimensional and dynamic process. The prolonged course of treatment, its cost, and unsatisfactory outcomes influenced the patients' adherence.

The Vitiligo Impact Patient Scale (VIPs): Development and Validation of a Vitiligo Burden Assessment Tool.

Vitiligo has a major impact on health-related quality of life. Although a few vitiligo-specific quality of life instruments exist, there is no specific vitiligo burden tool. We developed and validated a specific vitiligo burden tool according to skin phototype. In total, 301 patients completed 35 items of the Vitiligo Impact Patient scale, of whom 235 were of skin phototype I to III and 66 of phototype IV to VI. The dimensionality of the items was evaluated using factor analyses, with results suggesting three factors in fair- and dark-skinned patients ("Psychological effects on daily life," "Relationships and Sexuality," and "Economic Constraints, Care & Management of Disease"). Unidimensionality was confirmed by higher order factor analysis. Cronbach's α were high-and intradimensional coherences all demonstrated good reliability (α > 0.8). The final instrument consists of 29 items (19 items common to all patients, 3 specific to fair skin, and 7 to dark skin). The test-retest reliability demonstrated very good reproducibility. The intraclass correlation of each dimension was greater than 0.90 for each population. External validity was confirmed by the correlation coefficients and Bland and Altman plots of the Vitiligo Impact Patient scale-Fair Skin and Vitiligo Impact Patient scale-Dark Skin versus the Short-Form-12, PVC Metra, Body Image States Scale, and Daily Life Quality Index assessment tools.

Hidden victims of childhood vitiligo: impact on parents' mental health and quality of life.

This study aims to assess the impact of childhood vitiligo on the psychological status and quality of life of their parents, and to determine how this varies according to their children's disease condition. The study included 50 families of children with vitiligo (a total of 75 participants) and 50 families of normal children (a total of 79 participants). The psychosocial impact of the disease on parents was measured using the Self-rated Health Measurement Scale (SRHMS) and the Dermatitis Family Impact Questionnaire (DFI). SRHMS scores for parents of children with vitiligo were significantly lower than for parents with normal children. In addition, women had lower scores than men in the study group. The mean DFI score in affected families was higher than in unaffected families. Parents of children with vitiligo have significant psychological problems, and their quality of life is poorer than for parents of normal children. In conclusion, parents of children with vitiligo need as much care and attention as their affected children.

Cumulative life course impairment in vitiligo.

Vitiligo is an acquired, idiopathic skin disease characterized by the mostly progressive loss of the inherited skin color leading to white patches and in some cases to total depigmentation. The course of this ancient disease is still unknown. The worldwide prevalence range is 0.5-1%. The disease burden includes stigmatization, depression, impaired quality of life, lack of self-confidence, embarrassment and self-consciousness. To the best of our knowledge, the extent to which this chronic disease may exert an influence upon the life course of affected individuals has, to date, not been investigated. The material presented herein is the result of an accurate analysis of published literature. Moreover, we included our own data collected in two studies. To apply the concept of cumulative life course impairment in vitiligo, we looked at possible trigger factors, role of patient's age and the age at disease onset, disease duration and stigmatization. Stigmatization had the strongest impact. It is common in patients with an early disease onset, often leading to other disturbances. Our data revealed that older patients or those with a disease onset later in life adjust better to this chronic skin disorder and that they are less socially avoidant. However, long disease duration can also lead to impaired quality of life and obsession, while this group seems to be less depressed or embarrassed. Results from our own work with peer groups of these patients strongly support a positive long-lasting effect of treatment on quality of life of children, adolescents and adults. To which extent vitiligo may contribute to a cumulative life course impairment remains to be shown.

Cumulative life course impairment in other chronic or recurrent dermatologic diseases.

Skin diseases are visible, and identifying abnormal skin generally does not require specialist knowledge. Dermatology is therefore a ripe field for studies of cumulative life course impairment, because of the many diseases that affect not only the patients, but also their psychosocial interaction with others. Dermatological patients are visibly sick. The stigma associated with visible as well as hidden skin diseases is considerable and may have a major negative impact on the life course of patients. Stigma and psychosocial relations are however not the only sources of impairment for patients with dermatological diseases. Hand eczema is a prototypical example of a skin disease that causes life course impairment not only due to stigmatization, but also to a major loss of function. The impairment therefore occurs through several mechanisms increasing the potential impact of hand eczema on patients. The list of skin diseases where an assessment of cumulative life course impairment is relevant can be enlarged considerably. Diseases with functional impairment such as, e.g. scleroderma, diseases with prominent subjective symptoms such as acne or hidradenitis, and diseases with limited physical impairment but massive psychosocial impairment in specific communities such as vitiligo, are all suitable for further studies. Life course studies are particularly suitable for skin diseases due to their often chronic recurrent course, low mortality and their psychosocial aspects. The development of a stronger empirical framework is welcomed, and may lead to considerable benefits for patients.

Quality of life and emotional state in vitiligo in an Estonian sample: comparison with psoriasis and healthy controls.

The impact of vitiligo on quality of life is controversial. The aim of this study was to observe the impairment of quality of life and emotional state in adults with vitiligo compared with subjects with psoriasis and unaffected controls. The study group comprised 54 subjects with vitiligo, 57 with psoriasis and 57 unaffected controls. All subjects were examined and interviewed using the Dermatology Life Quality Index (DLQI) and Emotional State questionnaires. The total mean DLQI score in vitiligo was 4.7, compared with 0.6 in healthy controls (p<0.001) and 13.1 in psoriasis (p<0.001). In vitiligo, females experienced a greater impact on feelings and men experienced a greater impact on relationships. Lower quality of life in vitiligo was associated with active stage of the disease, extension of pigment loss, depigmentation on the hands, and earlier onset of disease. The results demonstrate that vitiligo has less impact on quality of life than psoriasis.

What is the burden of living with autoimmune polyendocrinopathy candidiasis ectodermal dystrophy (APECED) in 2012? A health-related quality-of-life assessment in Finnish patients.

OBJECTIVE: Autoimmune polyendocrinopathy candidiasis ectodermal dystrophy (APECED) is a rare disorder responsible for chronic candidiasis, a wide variety of autoimmune disorders and a risk of squamous cell carcinoma of the oral cavity or oesophagus. We investigated the impairment of quality of life in our cohort of Finnish patients. SUBJECTS, DESIGN AND MEASUREMENT: In a postal survey, 26 patients with APECED responded to three self-reported health-related quality-of-life questionnaires: RAND-36 (general health), RBDI (depression) and DLQI (dermatology life quality index). RESULTS: General health and vitality were the most affected items in our cohort. Male subjects presented higher impairment in emotional role limitations, social functioning, bodily pain, general mental health/emotional well-being, energy/vitality and general health perceptions but without reaching statistical significance. The number of accumulated diseases in APECED was not associated with lower results. But, age and duration of APECED correlated with fatigue (P = 0·01), well-being (P = 0·02) and general health (P = 0·03) impairment. Depressive symptoms affected 29% of the patients. There was a statistical negative correlation between RBDI score and age and duration of APECED. Hair loss, alopecia areata universalis especially, affected more severely the quality of life of female patients. Vitiligo and candidiasis did not have any significant impact on both the genders. CONCLUSIONS: We report the first study on specific impairment of quality of life related to APECED in a cohort of adult Finnish patients. General health, emotional well-being and vitality were the most diminished aspects of quality of life in our cohort. However, our results will need to be confirmed by additional controlled studies.