Literature Search
Initial database searches yielded 2288 articles, of which 1111 were duplicate records that were excluded from screening; one additional article was identified through other sources. Screening resulted in the exclusion of 919 articles during the title and abstract review; an additional 91 articles were excluded on the full-text review. A total of 168 articles were retained for data extraction and inclusion in the qualitative synthesis (Fig. 1).
Study Characteristics
Included studies were published between 1979 and 2021, with 72.6% published between 2010 and 2021 [4, 5, 9, 13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123,124,125,126,127,128,129,130,131,132,133,134,135,136,137,138,139,140,141,142,143,144,145,146,147,148,149,150,151,152,153,154,155,156,157,158,159,160,161,162,163,164,165,166,167,168,169,170,171,172,173,174,175,176,177]. Most included studies were observational (96.4%), with only six clinical trials (3.6%) containing data specific to psychosocial comorbidity in vitiligo; child, adolescent, and adult populations were represented in the included studies (Table 1). Studies representing populations from most geographic regions were included (Fig. 2); regions with the most studies included the Middle East (29.8%), Europe (28.6%), and Southern Asia (15.5%). All studies included in the systematic review were qualitatively assessed to minimize the risk of bias; included studies were deemed to be of acceptable quality.
Table 1 Summary of study characteristics Instruments Measuring QoL
Among QoL instruments assessing general health, total and/or component scores were most frequently reported for the adult and child versions of the Dermatology Life Quality Index (DLQI, 53 studies) [4, 13, 14, 18, 19, 22, 25, 33, 35,36,37,38, 45, 64, 65, 67,68,69,70, 74, 77, 81,82,83, 87, 89, 90, 92, 93, 96, 99, 100, 102, 104, 112, 115, 119, 120, 122, 123, 140, 143, 144, 146, 148, 151, 156, 161, 162, 164,165,166, 168], Children’s DLQI (seven studies) [24, 67, 73, 101, 103, 110, 152], 36-Item Short Form Health Survey (SF-36, eight studies) [9, 82, 83, 105,106,107, 161, 162], General Health Questionnaire (eight studies) [14, 30, 65, 93, 95, 113, 114, 124], and Skindex-29 (eight studies) [29, 71, 98, 106, 107, 162, 174, 175].
The DLQI is widely used across dermatologic diseases. Fifty studies that reported DLQI mean scores for patients with vitiligo were further examined. Mean scores did not differ vastly by region, but there were trends for higher mean scores (i.e., increased burden of disease) in the Middle East (4.7–14.7) [14, 45, 64, 74, 82, 83, 87, 104, 112, 140, 144, 164, 166], Southern Asia (4.1–12.4) [18, 22, 38, 100, 120, 143, 146, 168], and Eastern Asia (4.0–8.4) [35, 68,69,70, 119, 156, 161, 162] compared with Europe (1.8–8.7) [4, 77, 89, 90, 92, 93, 96, 99, 102, 104, 122, 123, 148] and North America (5.2–6.6) [115, 151, 165]. The lowest DLQI mean scores were reported in Italy (1.8 [89] and 4.3 [90]), Singapore (4.0 [69] and 4.4 [68]), and Nepal (4.1 [38]), whereas the highest DLQI mean scores were reported in Saudi Arabia (14.7 [45] and 9.0 [64]) and Egypt (13.0 [144], 12.4 [87], 12.2 [25], and 11.2–11.9 [19]). Factors affecting DLQI scores were not examined.
In contrast, the Vitiligo-specific QoL (VitiQoL) instrument has only been reported in eight studies [13, 16, 29, 32, 67, 80, 88, 115] using our search parameters; half were published in the past year, of which two were clinical trials. There were no notable regional differences in VitiQoL scores among studies, which were conducted in each of the seven geographic regions, with two in North America. Another instrument specific to vitiligo, the Vitiligo Impact Scale (VIS), was only used in three studies, with two published in the past year. One study used the original 27-item VIS [32], and two used the abbreviated 22-item scale (VIS-22) [36, 100]; all studies were conducted in Southern Asian populations. Although the use of vitiligo-specific scales has increased recently, there remains an unmet need for a widely utilized, vitiligo-specific QoL instrument that has been validated in large interventional studies.
Psychosocial Comorbidities
Prevalence of Psychosocial Comorbidities
A summary of studies that reported psychosocial comorbidities is presented in Table 2 (complete information presented in Table 1 of the ESM). Nine studies noted the presence of any (unspecified) psychosocial comorbidity in 32.6–90.0% of patients with vitiligo [22, 23, 34, 39, 42,43,44, 138, 145, 173]. Depression and anxiety were the most commonly reported psychosocial comorbidities. Forty-one studies reported depression or depressive disorders (including major depressive disorder, bipolar disorder, and dysthymic disorder) in patients with vitiligo, with a prevalence range from 0.1–62.3% [15, 17, 22, 23, 28, 30, 32, 34, 35, 39, 40, 43, 44, 46, 48, 50, 57, 68, 69, 71, 92, 100, 104, 113,114,115, 131, 137, 138, 142, 143, 145, 146, 150, 154, 155, 158,159,160, 163, 177]. Twenty studies reported anxiety or anxiety-related disorders (including generalized anxiety disorder, agoraphobia, social phobia [not social avoidance], and panic disorder), with a prevalence of 1.9–67.9% [22, 23, 30, 34, 39, 43, 44, 46, 50, 57, 92, 115, 137, 138, 150, 154, 155, 158, 159, 175]. Among studies that used the same rating scales for determining the prevalence of depression or anxiety, ranges were more narrow (Table 2). Concomitant depression and anxiety was reported in four studies (4.9–33.3%) [34, 43, 44, 159].
Table 2 Prevalence of psychosocial comorbidity in patients with vitiligo Other psychosocial comorbidities were also widely reported and included feelings of stigmatization (eight studies, 17.3–100%) [32, 101, 102, 131,132,133, 136, 169], sleep disturbance (seven studies, 4.6–89.0%) [92, 109, 117, 143, 150, 154, 167], alexithymia (four studies, 23.8–46.7%) [72, 108, 129, 142], anger (six studies, 14–36.9%) [40, 46, 141, 142, 145, 158], and somatoform disorder (three studies, 6.3–9.4%) [22, 137, 150]. Various impairments were noted, including emotional impairment (11 studies, 6–65.0%) [13, 23, 32, 40, 46, 56, 131,132,133, 141, 145]; cognitive impairment (three studies, 0.3–50.8%) [23, 137, 145]; and behavioral impairments that included avoidance or restriction behavior (nine studies, 12.5–76%) [32, 57, 61, 100, 102, 109, 130, 141, 146], attention-deficit/hyperactivity disorder (one study, 20.0%) [34], obsessive disorders (five studies, 0.1–19.5%) [23, 39, 137, 138, 154], and binge-eating disorder (one study, 7.4%) [22]. Alcohol dependence or abuse was reported in three studies (2.4–7.6%) [22, 57, 137]. Patients were affected by adjustment disorders, such as stress associated with vitiligo and worry about spread (12 studies, 4–93.9%) [13, 30, 32, 40, 100, 109, 113, 114, 131, 141, 142, 149], and also experienced aspects of self-consciousness, including embarrassment (eight studies, 24–66.7%) [13, 32, 131,132,133, 135, 142, 145] and low self-esteem (four studies, 6.2–72.7%) [32, 68, 69, 141]. Relationship difficulties including sexual dysfunction were reported over a wide range of patients (ten studies, 2.0–81.8%) [32, 43, 97, 109, 131, 132, 135, 154, 155, 167]. Suicidality was reported among patients with vitiligo, including unspecified suicidality (one study, 28.3%) [138], suicidal ideation (six studies, 3–25.0%) [32, 100, 131, 143, 150, 154], and suicide attempts (two studies, 3.3–3.7%) [150, 154].
Degree of Psychosocial Burden
Compared with controls, psychosocial comorbidities noted to be significantly (p ≤ 0.05) associated with vitiligo were depression (11 studies) [23, 28, 33, 34, 55, 63, 128, 140, 143, 145, 155], anxiety (ten studies) [23, 30, 33, 34, 55, 63, 119, 128, 140, 155], emotional or behavioral impairment (six studies) [9, 23, 34, 128, 140, 161], adjustment disorder (four studies) [15, 30, 37, 128], low self-esteem (three studies) [57, 65, 134], relationship and sexual dysfunction (three studies) [33, 155, 161], sleep disturbance (two studies) [55, 117], suicidality (one study) [128], self-consciousness (one study) [119], embarrassment (one study) [145], alexithymia (one study) [108], and alcohol abuse or addiction (one study) [128]. Five studies reported that depression [30, 84, 85, 102, 164] and/or anxiety [84, 164] scores measured by Beck Inventory scales were not significantly different in patients with vitiligo vs controls.
The QoL and/or psychosocial burden of vitiligo was most frequently compared with psoriasis (26 articles) [4, 9, 27, 58, 60, 76, 83, 84, 87, 92, 110, 111, 113, 118, 123, 130, 134, 136, 137, 150, 154, 159, 162, 173, 174], alopecia areata (13 articles) [14, 24, 58, 60, 75, 76, 83, 109, 118, 154, 159, 173, 174], acne (11 articles) [14, 58, 76, 117, 118, 137, 140, 154, 159, 174, 175], atopic dermatitis (ten articles) [27, 58, 73, 76, 110, 111, 119, 154, 173, 174], and urticaria (nine articles) [27, 58, 76, 137, 154, 155, 173,174,175]. Table 3 lists the prevalence of psychosocial comorbidity in vitiligo compared with other skin diseases. In general, psychosocial comorbidities were more prevalent in vitiligo compared with acne, alopecia areata, atopic dermatitis, and urticaria but less prevalent vs psoriasis. Regarding non-dermatologic diseases, one study reported comparable SF-36 mental component scores in patients with vitiligo vs chronic lung disease, arthritis, cancer, and congestive heart failure [9].
Table 3 Psychosocial comorbidity burden in patients with vitiligo compared with other skin diseases Factors Associated with Psychosocial Burden
Factors that were significantly associated with higher psychosocial (Fig. 3) or overall QoL burden were female sex (30 studies) [15, 21, 25, 28, 30, 45, 46, 49, 51, 57, 62, 66,67,68, 70, 88, 90, 99, 104, 107, 109, 112, 113, 120, 123, 132, 143, 146, 154, 158], lesion location in visible areas (e.g., face, hands [17 studies]) [4, 25, 35, 37, 49, 62, 70, 80, 89, 90, 92, 101, 122, 123, 138, 143, 151] or genitals (eight studies) [70, 89, 97, 105, 115, 122, 144, 151], younger age (16 studies; particularly those aged <30 years and more so in adolescents) [17, 25, 30, 48, 49, 62, 67, 68, 70, 88, 100, 113, 119, 132, 151, 160], and extensive body area involvement (13 studies) [4, 25, 63, 65, 70, 89, 92, 96, 98, 107, 151, 152, 166]. Unmarried and/or single relationship status (nine studies) [17, 22, 48, 49, 62, 70, 93, 113, 138], longer disease duration (nine studies; particularly duration >5 years) [4, 25, 30, 62, 65, 68, 88, 107, 119], progressive disease (seven studies) [22, 25, 35, 89, 92, 107, 143], Fitzpatrick skin phototype IV–VI (five studies) [21, 35, 37, 77, 107], lower education status (five studies; particularly high school or lower level of education) [17, 48, 49, 108, 136], non-segmental vitiligo (three studies; vs segmental or focal vitiligo) [97, 115, 143], non-Caucasian race (three studies) [93, 96, 133], positive family history of vitiligo (two studies) [98, 101], being employed (one study; compared with being students, unemployed, or retired) [35], and higher socioeconomic level (one study) [25] were also significantly associated with increased burden. Four studies reported that comorbid depression significantly reduced overall QoL [35, 92, 100, 115]. Management strategies [107] including camouflage [18, 25, 102, 122, 156], cognitive behavioral therapy [26, 125, 127, 148, 168], phototherapy [51, 52, 157], and depigmentation cream (in patients with extensive vitiligo) [19] were associated with decreased vitiligo-associated burden.
Coping Strategies Among Patients with Vitiligo
The most commonly discussed coping strategies in studies included the use of concealing clothing (six studies, 8.3–78.3% of patients) [25, 74, 101, 102, 131, 157], camouflage (four studies, 14.6–62.0% of patients) [25, 74, 102, 131], and altered body movements (three studies, 5.9–8.1% of patients) [74, 101, 102]. Other coping strategies included vitiligo acceptance [42, 132, 170], avoidance behavior [101, 102, 170], and psychotherapy or support groups [42, 61, 170].
Perceptions Toward Vitiligo
Perceptions toward vitiligo were discussed in 13 articles; seven articles focused on perceptions of patients toward their vitiligo [32, 46, 79, 126, 158, 165, 172], and six focused on perceptions of others toward patients with vitiligo [31, 47, 54, 78, 91, 171]. Several articles covered aspects of knowledge or beliefs about vitiligo, including attitudes and behaviors. Common misperceptions included thinking that vitiligo is contagious [31, 47, 54, 91, 172] and that vitiligo is caused by external forces (e.g., “evil eye,” witchcraft/sorcery, evil spirits/Jinn, chance/fate) [31, 32, 46, 47, 79, 158], lack of hygiene [47, 91], or infection with germs or viruses [47, 54, 79, 158]. In three studies that investigated attitudes toward patients with vitiligo, participants with sufficient knowledge of vitiligo vs insufficient knowledge reported a lower prevalence of negative attitudes and a higher prevalence of positive attitudes [31, 78, 91]. In four studies that reported a willingness to have a relationship with or marry someone with vitiligo, 6.7–43.9% of participants responded in the affirmative [31, 47, 54, 78]; reasons for refusing marriage included social reasons, the impact of vitiligo on appearance, and that vitiligo is believed to be inherited or contagious [31, 47].
Caregiver Burden
Caregiver (e.g., parents, sibling, spouse) burden and associated factors were discussed in ten articles [20, 24, 53, 64, 86, 103, 111, 121, 139, 172], although only four provided prevalence rates [64, 86, 103, 111] for aspects of psychosocial burden. Overall QoL among caregivers was impaired, with depression, anxiety, emotional distress, and impaired social life commonly mentioned. There were no notable consistencies across studies regarding factors affecting caregiver burden. Two studies reported significant parental depression vs controls [24, 121], and one study showed that caregiver depression and anxiety significantly reduced QoL among patients with vitiligo [111].