Quality of Life in Parents of Children and Adolescents with Vitiligo: A Qualitative Study

Dear Editor:

Vitiligo is a common acquired autoimmune disorder characterized by skin depigmentation, with a prevalence of 0.5% to 2.0% of the general population¹. The exact prevalence of vitiligo in the pediatric population is unknown, although 25% of vitiligo cases have onset prior to 14 years of age². When vitiligo is diagnosed in children, parental stress is very high, resulting in actively seeking care and contacting health professionals. Numerous studies have reported a significant psychological impact of childhood vitiligo on children themselves; however, little is known about its impact on their parents³,⁴,⁵,⁶,⁷. This study aimed to assess parental concerns and perspectives about their children’s vitiligo.

We performed a prospective, cross-sectional study in two secondary referral hospitals from July 2019 to April 2021. Parents or caregivers of children and adolescents aged <19 years with vitiligo were enrolled. Participants underwent a semi-structured interview composed of five domains: disease awareness and concern as a parent, impact on parent’s daily life, impact on parent’s worklife, impact on parent’s social activities and relationships, and the first thought upon diagnosis of child’s vitiligo (see the details in Supplementary Material). Among these five domains, parents’ answers to disease awareness and concern domains were analyzed according to word frequency. Word clouds were generated to visualize the most common words in the interview. The more often a word was mentioned, the larger it appeared in the created image (Supplementary Fig. 1). Demographic data about the child’s age, gender, disease duration, vitiligo subtype, involved body surface area, and anatomic locations were collected. An objective measure of partental quality of life (QoL) was assessed as the Family Dermatology Life Quality Index (FDLQI), which is a widely employed QoL tool for family members of patients with chronic dermatoses⁸. The correlations of FLDQI scores and variables of age, disease duration, involved body surface area, and head and neck involvement were analyzed using Spearman’s Rank Correrlations. Statistical significance was defined as p<0.05. The study was approved by the Institutional Review Board of the St. Vincent’s Hospital (IRB no. VC21RISI0099). Written informed consent was obtained from all participants.

A total of 124 parents of children with vitiligo completed the interview; the response rate varied from 75.8% to 96.8% according to domain. The median age of children with vitiligo was 8.5 years (range, 1~18 years), and the male-to-female ratio was 1:1.4. The median disease duration of the patients was 12 months. The most common subtype was segmental vitiligo. Regarding extent, 98.4% of children presented vitiligo with a body surface area less than 5% (Table 1). In terms of disease awareness, 37.8% of parents replied they have never heard of the disease. As a parent or caregiver, they were mainly concerned about the uncertainty of disease progression (45.0%), whether the disease is curable (28.3%), impact on children’s low self-esteem (20.0%), children’s school life or bullying (17.5%), and disease spread to the facial area (12.5%) (Table 2, Supplementary Fig. 1). Parents were experiencing significant psychological stress in their daily lives, and only 25.5% of parents reported no impact. Also, 22.3% of caregivers needed to adjust their working hours due to regular hospital visits for child’s treatment. A disruption of social life was evident in 21.9% of parents to avoid unwanted attention from others. The most frequently mentioned emotions of parents upon the child’s vitiligo diagnosis were “worry,” “despair,” “guilt,” and “shock” (Table 2). The FDLQI score was obtained in 106/124 individuals (median 7.82, range 0~26); no significant correlation was observed with child’s age, disease duration, body surface area, and face and neck involvement (Supplementary Table 1).

Table 1. Demographics of patients with vitiligo (n=124).

Variable		Value
Age (yr)		8.5 (1~18)
Sex
	Male	58 (46.8)
	Female	66 (53.2)
Disease duration (mo)		12 (0.5~202)
Subtype
	Focal	9 (7.3)
	Segmental	67 (54.0)
	Nonsegmental	45 (36.3)
	Mixed	3 (2.4)
Body surface area (%)
	0~0.2	56 (45.2)
	0.2~0.5	30 (24.2)
	0.5~1	21 (16.9)
	1~5	15 (12.1)
	>5	2 (1.6)
Anatomic regions of involvement
	Face and neck	91 (73.4)
	Upper limbs	17 (13.7)
	Lower limbs	20 (16.1)
	Trunk	37 (29.8)
	Hands and feet	15 (12.1)
	Genitalia	3 (2.4)
Fitzpatrick skin type		1 (0.8)
	II
	III	72 (58.1)
	IV	42 (33.9)

Values are presented as median (range) or number (%).

Table 2. Summary of parent-reported concerns of child’s vitiligo on various domains (n=124).

Domain		Number (%)
Q1. Worry or concern as a parent or caregiver		Response rate, 96.8%
	Uncertainty of disease progression	54 (45.0)
	Disease curability	34 (28.3)
	Child’s low self-esteem or poor body image	24 (20.0)
	Child’s school life or bullying at school	21 (17.5)
	Facial involvement	15 (12.5)
	Long treatment period	12 (10.0)
Q2. Impact on parent’s daily life		Response rate, 88.7%
	Psychological stress (feelings of guilt, worry, anxiety, unwanted attention from others, etc.)	54 (49.1)
	Frequent hospital visits	29 (26.4)
	Refrain from outdoor activity	6 (5.5)
	Treatment expense	3 (2.7)
	No impact	28 (25.5)
Q3. Impact on parent’s workplace		Response rate, 75.8%
	Working hours adjustment	21 (22.3)
	No impact	58 (61.7)
Q4. Impact on parent’s social activities and relationship		Response rate, 77.4%
	Conscious of social stigma	19 (19.8)
	Avoidance of social activities	2 (2.1)
	No impact	60 (62.5)
Q5. First thought upon child’s diagnosis with vitiligo		Response rate, 91.9%
	Worry	25 (21.9)
	Hopelessness	19 (16.7)
	Despair	16 (14.0)
	Shock	12 (10.5)
	Guilt	9 (7.9)
	Unfairness	7 (6.1)

Our study found that parent-reported concerns and QoL impairment were prevalent among parents or caregivers of children with vitiligo. Uncertainty of disease progression and dedicating time for long-term frequent treatment affected parents’ daily lives, as well as work and social lives. In addition, many parents were suffering from emotional distress of guilt and embarrassment. We also observed no statistical correlation between FDLQI and disease duration, extent of vitiligo, or head and neck involvement. The disease severity and duration did not correlate with QoL impairment of the parents, which reflects significant parental psychosocial burden no matter the size or location of the vitiligo lesion.

Limitations of this study include a small sample size, cross-sectional design, and no control group. Moreover, the FDLQI score was not as high as that of other pediatric skin disorders reported in previous studies⁹,¹⁰; however, we confirmed the burden of parents through their own report. Also, disease unawareness, which was noted in some of the parents in the study, could have contributed to underestimation of the FDLQI score. Furthermore, these commonly used tools for assessing parental QoL might not properly reflect the actual burden of parents with pediatric vitiligo. Further investigation of an alternative scoring method that can better represent a parent’s QoL in child vitiligo is required.

In conclusion, our study revealed that parents of children and adolescents with vitiligo have various concerns and experience problems in daily and social lives, which should be managed appropriately. Recognizing parental QoL impairment and providing psychosocial support are important to increase treatment adherence and decrease the family burden of chronic skin disease.

SUPPLEMENTARY MATERIALS

Supplementary data can be found via http://anndermatol.org/src/sm/ad-22-150-s001.pdf.

Supplementary Fig. 1

Word cloud overview of parental concern upon the child's vitiligo diagnosis. The size of each word corresponds to the frequency of occurrence in the topic.

Supplementary Table 1

Spearman's rank correlations between family dermatology life quality index and child patient's other variables

Supplementary Material

Semi-structured interview questionnaire and answer sheet.