Therapy Utilization among Children with Vitiligo at an Urban Tertiary Care Center

Vitiligo is estimated to affect as many as 5 million people in the United States (U.S.), and prevalence rates around the world vary from 0.5%-2% [1]. It is known that vitiligo causes psychological distress in affected patients and can negatively impact Quality of Life (QoL) due to its stigmatizing nature [2]. 

Despite its worldwide prevalence no curative therapies currently exist [3,4]. Two common treatments include institution-based Phototherapy (PT) and Home-Based Phototherapy (HBPT). Unfortunately, there are many insurance coverage barriers for institution-based PT, and insurance approval for HBPT can pose its own challenges. According to a 2010 analysis, the Out-of-Pocket (OOP) cost of HBPT devices without insurance coverage varied between $2,180 and $7,000 depending on the size and model [5]. This high OOP cost is particularly relevant considering HBPT is much less costly long-term than biologic treatment and frequent institution-based PT visits. In a 2011 study, 43% of patients with a HBPT prescription did not purchase a device; 73% of these cases were due to high OOP expenses [6]. A 2004 study found that the estimated annual direct cost of treating vitiligo, including visits to clinicians, hospital appointments and prescriptions, was $175,000,000 [7]. As a result, the cost-effectiveness of vitiligo therapies has been questioned [8]. 

Given the high costs of and barriers to obtaining therapy for vitiligo, our goal was to define the utilization of therapies among children with vitiligo at a large urban tertiary care center. We aimed to identify differences in therapy utilization among different subpopulations within this cohort.

After obtaining Institutional Review Board approval (IRB#20-018073), we reviewed the records of patients treated at the Children’s Hospital of Philadelphia (CHOP) Dermatology practice from 5/01/2010-6/01/2020. Subjects were included if they were diagnosed with vitiligo under the age of 18 years. 

Age, gender, self-described race/ethnic background, zip code of primary residential address, past medical history (history of autoimmune diseases and atopic dermatitis), family history of vitiligo, family history of other autoimmune diseases and hypothyroidism, age at first presentation of vitiligo, and treatment type were abstracted. Median household income was obtained by zip code through data from the U.S. Census Bureau in 2019 [9]. 

Baseline and demographic characteristics were summarized by standard descriptive methods (e.g. means and standard deviations for continuous variables such as age, and numbers with percentages for categorical variables such as gender).

Our study identified 360 children that met inclusion criteria. Average age was 10.8 years and average age at diagnosis was 6.21 years; 41.9% were males, and 58.1% were females. Forty percent were Caucasian and 83.3% identified as non-Hispanic/LatinX. Location of vitiligo was as follows: head/face/neck/scalp (215, 59.7%), trunk (159, 44.2%), arms (not including hands) (123, 34.2%), hands (52, 14.4%), legs/feet/toes (175, 48.6%), and genitalia (92, 25.6%). Fitzpatrick skin phototype varied from Type I to Type VI (Table 1). 

Table 1: Demographics (N=360). 

A high percentage (32.5%) of cases also had a history of atopic dermatitis, while a small percentage had hypothyroidism (1.9%), hyperthyroidism (0.3%), T1DM (1.4%), alopecia areata (3.6%), Celiac disease (1.1%), and psoriasis (1.4%) (Table I). A FH of vitiligo, thyroid condition or other autoimmune diseases were found in 51.9% (Table 1). Twenty-eight (7.8%) subjects had a 1st degree relative with vitiligo and 60 (16.7%) subjects had a 2nd degree relative with vitiligo (Table 1). 

The median household income by zip code was $78,660 (range: $23,353 - $218,570). One hundred and ninety-four subjects had private insurance (53.9%), 159 (44.2%) had Medicaid, and 7 (1.9%) had no information regarding insurance coverage available (Table 1). 

Thirteen (3.6%) used narrow-band ultraviolet light B, 45 (12.5%) used excimer laser (XTRAC) in clinic, 13 (3.6%) used HBPT, 1 (0.3%) used psoralen plus ultraviolet light A, 200 (55.6%) used topical steroids, 35 (9.7%) used topical pimecrolimus, 212 (58.9%) used topical tacrolimus, and 4 (1.1%) used other treatments. Sixty (16.7%) elected for no therapy (Table 2). 

Table 2:Treatments (N=360).

Our study had a higher median household income of $78,660 compared to the median household income of $68,703 in the United States in 2019 [10]. In an online survey study, results showed that treatment cost, relationships, and work schedule may be barriers to receiving care for vitiligo [11]. As household income is affected by relationships and work schedules, parental income may play an integral role in treatment compliance for vitiligo pediatric patients. 

Only a small proportion of our population, 62 (17.2%) used light based therapies at home or in the clinic. Of the 62, 40 had private insurance and 22 were enrolled in Medicaid. The median household income for this subpopulation was $89,790, which was higher than the median income of our overall cohort. Light therapy in a clinic or hospital requires frequent visits to the doctor, which may pose a financial and time burden for families.12 Additionally, 48/62 (77.4%) were described as Skin Type III-IV, suggesting that those with darker skin tones may be more likely to undergo light therapy in clinic or at home. 

Despite being more convenient, effective, and cost-efficient overall, only 13 subjects used HBPT. Of these 13 subjects, 12 had private insurance and 1 was enrolled in Medicaid. The median household income for these 13 subjects was $105,080, which is higher than our overall cohort’s income and those using light therapy in general. Many insurances do not cover HBPT and perhaps only those who can afford OOP costs can undergo treatment. 

A pilot study found that the cost of phototherapy in the hospital exceeded the cost of home phototherapy after 7 weeks of treatment [12]. Information and support should be provided to patients and families to guide management in the most cost-effective manner as costs for vitiligo treatments can add up in the long-term. The majority of our subjects using HBPT were self-described Caucasian (8, 61.5%). Despite vitiligo patients with darker skin tones having a lower QoL, there may be disparities in HBPT utilization by race [13]. Identifying the strategies by which these barriers can be reduced may allow more pediatric patients to successfully receive treatment for their vitiligo.

Given that only a small percentage of our population utilized HBPT, our study demonstrates a need for increasing access to streamlined care and insurance coverage for those that wish to obtain HBPT. Patient education programs have shown to improve management of atopic dermatitis in children [14]. Similar education programs may advance the use and understanding of the most cost-effective vitiligo therapies. The high median income for those who used HBPT suggest that targeted efforts should be placed on groups that have limited access to care such as those from low-income neighborhoods. However, our study is limited by its small sample size and retrospective design. We were not able to determine status or severity of disease through retrospective review, given that vitiligo can flare and remit in the time interval between visits. To improve access to treatment for children with vitiligo, prospective longitudinal cross-sectional studies with a larger sample are needed.