|Year : 2018 | Volume
| Issue : 1 | Page : 21-25
Effect of occurrence of vitiligo in children over quality of life of their families: A hospital-based study using family dermatology life quality index
Pratik Gahalaut1, Sandhya Chauhan2, Amit Shekhar1, Madhur Kant Rastogi1, Nitin Mishra1
1 Department of Dermatology, Shri Ram Murti Smarak Institute of Medical Sciences, Bareilly, Uttar Pradesh, India
2 Department of Pediatrics, Shri Ram Murti Smarak Institute of Medical Sciences, Bareilly, Uttar Pradesh, India
|Date of Web Publication||28-Dec-2017|
69, Silver Estate, PO-RKU, Bareilly - 243 006, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
Introduction: Vitiligo in an adult patient has a profound effect on the quality of life (QoL) of that particular patient. Although it is known that vitiligo in adult patient affects QoL in their family, very little information is available regarding QoL in a family having children suffering from vitiligo. Materials and Methods: This is a cross-sectional, hospital-based study to ascertain the effect children suffering from vitiligo have on the QoL of their respective families. Study participants were fifty healthy parent/immediate caregivers of fifty corresponding children suffering from vitiligo. The QoL in the family of these vitiliginous children was assessed with the help of Family Dermatology Life Quality Index (FDLQI). Results: There was significantly more impairment of FDLQI among respondents if vitiliginous child was female compared to male. The total FDLQI showed a significant negative correlation with duration of vitiligo in children. Analysis of individual items in FDLQI revealed emotional distress as the most impaired facet of FDLQI and housework as the least affected item. Conclusion: Presence of vitiligo in children affects the QoL of that particular child and his/her family. This impairment of FDLQI is more if the child suffering from vitiligo is female. Treatment of vitiligo in pediatric age group should include psychological counseling and support for the child as well as their parents/caregivers.
Keywords: Caregiver, Family Dermatology Life Quality Index, gender, health-related quality of life, parent, vitiligo
|How to cite this article:|
Gahalaut P, Chauhan S, Shekhar A, Rastogi MK, Mishra N. Effect of occurrence of vitiligo in children over quality of life of their families: A hospital-based study using family dermatology life quality index. Indian J Paediatr Dermatol 2018;19:21-5
|How to cite this URL:|
Gahalaut P, Chauhan S, Shekhar A, Rastogi MK, Mishra N. Effect of occurrence of vitiligo in children over quality of life of their families: A hospital-based study using family dermatology life quality index. Indian J Paediatr Dermatol [serial online] 2018 [cited 2019 May 20];19:21-5. Available from: http://www.ijpd.in/text.asp?2018/19/1/21/206066
| Introduction|| |
Vitiligo has a profound impact on the quality of life (QoL) of patients.,,,, The impact of many skin diseases is not limited to the patient but may extend to the rest of family. There is a dearth of data regarding QoL among family having children with vitiligo, and worldwide, only a few studies have evaluated the effect of children with vitiligo on QoL in family members.,,,,, Family Dermatology Life Quality Index (FDLQI) has been validated to measure the impact of dermatological diseases on QoL of the patient's family.,
The aim of the present study is to evaluate the QoL in family members or immediate caregivers of the children having vitiligo with the help of FDLQI questionnaire.
| Materials and Methods|| |
Convenient sampling was used to enroll fifty healthy parents/immediate caregivers of fifty pediatric patients aged 3–16 years having vitiligo. For each child, either one parent/caregiver was included from the corresponding family. A sample size of fifty participants was chosen in accordance with the study performed by Basra et al. for validation of FDLQI questionnaire. This cross-sectional study was conducted from June 2014 to November 2015 at the department of pediatrics and a vitiligo clinic attached to the department of dermatology of a tertiary level teaching hospital located in northern India.
Inclusion criteria were a healthy parent/immediate caregiver of a child having vitiligo involving ≥10% body surface area and having disease for at least 3 months preceding the date of presentation. Pediatric patients having any chronic cutaneous/systemic disease in self or any other siblings or family members were excluded from the study. Since a validated Hindi language version of FDLQI is not available, respondents were included in the study only if they were literate and able to read and write English. So far, a specific vitiligo family impact questionnaire has not been developed. Hence, we adopted FDLQI to evaluate the effect of child with vitiligo on QoL of a family.
Each parent/caregiver was asked to complete the 10-item validated FDLQI questionnaire after taking an informed consent. Each question inquires about the family member's perception of a certain specific impact on his/her health-related QoL over the past 1 month and is scored on a 4-point scale (0–3)., FDLQI has been validated to measure the impact of dermatological diseases on QoL of the patient's family. This questionnaire measures the following issues: emotional distress, increased household expenditure, social life, relationships, others' reaction to the disease, physical well-being reaction, taking care of patient, housework, and job., FDLQI score ranges from 0 to 30. A higher score indicated more impairment. The scoring method for each question was as follows:
- Not at all: 0
- A little: 1
- Quite a lot: 2
- Very much: 3
- Question unanswered: 0.
Data analysis was done with the help of SPSS software version 20.0 (IBM SPSS software for windows, version 20.0).
QoL for a family was deemed to be impaired if FDLQI score was ≥2. Requisite approval was taken from Institutional Ethics committee.
| Results|| |
Altogether, fifty healthy family members of fifty children having vitiligo vulgaris were included in this study. The particular family member was included in the study if he/she was the immediate caregiver of the vitiliginous child. [Table 1] gives the demographic profile and clinical characteristics of the children and their families. Among family member respondents, 76% were parents and 24% were grandparents.
[Figure 1] gives a detailed description of FDLQI (item-wise) in the study population. QoL in the family members was affected (i.e., FDLQI ≥2) in 50/50 (100%) respondents. Although the QoL was affected more in female respondents (9.28 ± 3.20) compared to male respondents (8.45 ± 3.88), this difference was statistically not significant (P = 0.68). Widowed/single family members showed more impairment in QoL compared to married members though it was statistically insignificant (P = 0.839)
There was significantly more impairment of FDLQI (P = 0.047) if vitiliginous child was female (9.64 ± 2.97) compared to male (7.90 ± 3.00). The total FDLQI showed a significant negative correlation with vitiligo duration, i.e., the QoL of family members was affected more if the duration of vitiligo was less and vice versa (P = 0.01, Spearman's rho correlation coefficient was −0.363).
Although total FDLQI score was more among family members of children having vitiligo on exposed parts (mean = 9.187 ± 3.50) compared to children having vitiligo on unexposed parts (mean = 8.33 ± 2.11), this difference was also statistically nonsignificant (P = 0.352). There was no significant correlation between FDLQI scores and the involved body surface area (P = 0.761, Pearson correlation = 0.583) or age of the child (P = 0.839, Pearson correlation = −0.041).
The mean scores for individual items in FDLQI were analyzed. Highest scoring items/domains were found to be emotional distress, expenditure, people's reaction, and burden of care in that order. The least affected item was housework.
Individual items of FDLQI were further compared in children having vitiligo on exposed and nonexposed sites. Family respondents of vitiliginous children had significantly more impairment in the domain of the reaction of other people in response to the patient's skin appearance (P = 0.03), leisure activities (P = 0.015), and the effect on social life (P = 0.01) compared to other domains of FDLQI, if vitiligo involved exposed sites more compared to nonexposed sites.
Scores for individual items of FDLQI were compared for vitiligo involving >20% body surface area in a child with vitiligo involving <20% body surface area. Domains of expenditure (P = 0.003), loss of job (P = 0.04), and housework (P = 0.002) were significantly more impaired among family members of children having vitiligo in >20% of body surface area.
| Discussion|| |
In dermatological and other chronic diseases, QoL of a patient affects the QoL of family. Hence, efforts to improve the QoL of a patient should also address the issue regarding QoL of the families or caregivers. Family QoL is considered an important outcome of services and policies and should be analyzed independently to the QoL of the patient.,
Vitiligo rarely causes physical discomfort, but patients may develop inferiority complexes, fear, anxiety, depression, suicidal thoughts, social communication difficulties, embarrassment, irritability, and fear of stigmatization. They may be subjected to stigmatization, nasty comments, or distress. A disease may impair social, financial, and health aspects of the family members of diseased individual. Patients of vitiligo often rely heavily on support from family members to overcome these psychosocial obstacles. Vitiligo adversely affects the QoL of people close to the patient including his/her family member and other close contacts. Parents are the most sensitive and closest caregivers for children. Parents of children suffering from vitiligo may experience psychological problems or social pressure. Past studies have promoted the use of psychiatric screening questionnaires that might help in recognizing psychiatric morbidity in parents who have children with vitiligo.
There are only a couple of past studies describing the use of FDLQI for determining family QoL in patients with vitiligo., Both these studies, Bin Saif et al. from Saudi Arabia and Hindjani from Iran, included only adult patients of vitiligo. Another recent study from China by Amer et al. addressed the issue of QoL in parents of pediatric patients with vitiligo with the help of Dermatitis Family Impact Questionnaire (DFIQ). Basra et al. included both adult and pediatric patients having different chronic inflammatory and noninflammatory skin ailments including vitiligo in their study for developing FDLQI. In this study, patients of vitiligo comprised a miniscule proportion among the total number of study participants.
The fact that all the respondents in our study were affected with total FDLQI scores of ≥2 reinforces the findings of the past study which stigmatized parents as the new victims of vitiligo. This same past study stated that the presence of vitiligo in children affects the mental state and QoL of parents to various degrees. This finding is also similar to the past study done among family members of adult patients having vitiligo where family members' QoL was affected in 91.5% of participants. It is noteworthy that Basra et al. reported that among patients having chronic skin ailments, statistically significant and greater impairment of FDLQI were recorded in families having patients <12 years of age compared to families having patients >12 years of age. It is possible that FDLQI as a generic tool reports a higher impairment of QoL in a family having patients aged <12 years compared to families having patients >12 years of age for the same disease.
Bin Saif et al. reported a total FDLQI of 9.24 in parents of patients with vitiligo which is quite similar to our study. In that study, only adult patients with vitiligo along with their immediate caregivers were included in the study unlike our present study which includes family respondents of only pediatric patients. It is noteworthy that majority of both Indian and Saudi population is Fitzpatrick Skin Type IV and V. Vitiligo in darker skin individuals is associated with greater social and psychological implications., A total FDLQI score of 8.88 in our present study is less than that reported by Handjani et al., namely 14.40. This disparity may be due to small sample size, adult age group of study subjects, and variations in the geographic distribution and/or sociocultural practices of the past study. Effect of vitiligo on family member's QoL in the present study was also more compared to another study done in the past by Basra et al. on patients having multiple noninflammatory skin conditions including vitiligo. This difference may be due to relatively small sample size as mentioned earlier in this past study.
In the present study, significantly more impairment in FDLQI was noticed if the affected child was female. This finding assumes more significance in the backdrop of recent epidemiological study from India which reports that pediatric vitiligo has a female predilection., Amer et al. failed to report any statistically significant impact of children's gender on DFIQ in China. The social stigma of vitiligo in India and fear of difficulty in marriage in the future may be responsible for the increased impairment in QoL observed in the present study among parents having a female child with vitiligo. Earlier studies assessing gender differences and the effect of chronic skin diseases showed that women have significantly more overall impairment of QoL as compared with men having vitiligo., Past studies have confi rmed that QoL in patients with vitiligo and their family members are related psychosocial constructs. However, Bin Saif et al. reported higher scores of FDLQI if affected patient was a male. The authors stated that this finding may be specific to Saudi Arabian culture since men play a more dominant role in the family setting there. The difference of adult and pediatric age groups in study populations along with different sociocultural believes among the past and present studies may be responsible for these variable results.
In the present study though FDLQI score was more among family members of patients having lesions of vitiligo on unexposed part, site of vitiligo in a child had no significant correlation with FDLQI scores. This is similar to the findings of Amer et al. and Bin Saif et al., who reported that deterioration in DFI and FDLQI scores, respectively, was not related to vitiliginous patch visibility., This finding is also consistent with past studies done for assessing the impact of psoriasis and atopic dermatitis on QoL in a family member.,,
In the present study, gender difference among respondents was seen though not statistically significant. Past studies have failed to report a clear-cut association between FDLQI and gender of family member., While one study has reported that in a family having vitiliginous children, mothers tend to be more affected and more distressed, recording higher impairment of QoL compared with fathers; another study reported significant greater FDLQI scores in females for the domain of social life only.,
Similar to our study, past studies reported the domain of emotional distress as the most common and main concern among the family members., This finding suggests that vitiligo as a disease affects the QoL of family members in similar extent and domains, irrespective of vitiliginous patient's age.
Individually domains of leisure activities were affected more if vitiligo affected exposed parts. This is self-explanatory as such children and/or their parents will be subjected to more questions and discrimination from society.
A shorter disease duration resulted in significantly greater impairment of QoL in family respondents. This is expected as prolonged disease duration enhances the partner/family members' abilities to adjust and acquire coping skills to better deal with vitiligo.
A relative smaller sample size, single-center hospital-based study, and exclusion of parents or caregivers if they were not able to read and write English are the limitations of this study. Nevertheless, these shortcomings cannot negate the findings of this study altogether.
| Conclusion|| |
To conclude this study from Indian subcontinent measures, the QoL in family members of children having vitiligo with the help of a standardized, reproducible, and validated tool. There is a significant detrimental effect on QoL of parents if vitiliginous child is a female. Furthermore, the fall in QoL had a significant inverse relationship with duration of vitiligo in the child.
Although this is a single-center study with a small sample size, findings of the present study should help the dermatologists/pediatricians/treating physicians while dealing with parents of a vitiliginous child in a more productive way. Parents/caregivers of a child having vitiligo should be counseled appropriately and should be provided psychological support.
The authors would like to thank the management of Shri Ram Murti Smarak Institute of Medical Sciences, Bareilly, for providing logistical support while preparing this manuscript.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Parsad D, Pandhi R, Dogra S, Kanwar AJ, Kumar B. Dermatology Life Quality Index score in vitiligo and its impact on the treatment outcome. Br J Dermatol 2003;148:373-4.
Mishra N, Rastogi MK, Gahalaut P, Agrawal S. Dermatology specific quality of life in vitiligo patients and its relation with various variables: A hospital based cross-sectional study. J Clin Diagn Res 2014;8:YC01-3.
Amer AA, Gao XH. Quality of life in patients with vitiligo: An analysis of the dermatology life quality index outcome over the past two decades. Int J Dermatol 2016;55:608-14.
Pahwa P, Mehta M, Khaitan BK, Sharma VK, Ramam M. The psychosocial impact of vitiligo in Indian patients. Indian J Dermatol Venereol Leprol 2013;79:679-85.
] [Full text]
Belhadjali H, Amri M, Mecheri A, Doarika A, Khorchani H, Youssef M, et al.
Vitiligo and quality of life: A case-control study. Ann Dermatol Venereol 2007;134(3 Pt 1):233-6.
Amer AA, Mchepange UO, Gao XH, Hong Y, Qi R, Wu Y, et al.
Hidden victims of childhood vitiligo: Impact on parents' mental health and quality of life. Acta Derm Venereol 2015;95:322-5.
Bin Saif GA, Al-Balbeesi AO, Binshabaib R, Alsaad D, Kwatra SG, Alzolibani AA, et al.
Quality of life in family members of vitiligo patients: A questionnaire study in Saudi Arabia. Am J Clin Dermatol 2013;14:489-95.
Basra MK, Sue-Ho R, Finlay AY. The Family Dermatology Life Quality Index: Measuring the secondary impact of skin disease. Br J Dermatol 2007;156:528-38.
Handjani F, Kalafi A. Impact of dermatological diseases on family members of the patients using Family Dermatology Life Quality Index: A preliminary study in Iran. Iran J Dermatol 2013;16:128-31.
Manzoni AP, Pereira RL, Townsend RZ, Weber MB, Nagatomi AR, Cestari TF. Assessment of the quality of life of pediatric patients with the major chronic childhood skin diseases. An Bras Dermatol 2012;87:361-8.
Bilgiç O, Bilgiç A, Akis HK, Eskioglu F, Kiliç EZ. Depression, anxiety and health-related quality of life in children and adolescents with vitiligo. Clin Exp Dermatol 2011;36:360-5.
Basra MK, Finlay AY. The family impact of skin diseases: The greater patient concept. Br J Dermatol 2007;156:929-37.
Bailey DB, McWilliam RA, Darkes LA, Hebbeler K, Simeonsson RJ, Spiker D, et al
. Family outcomes in early intervention: A framework for program evaluation and efficacy research. Except Child 1998;64:313-28.
Al Robaee AA. Assessment of quality of life in Saudi patients with vitiligo in a medical school in Qassim province, Saudi Arabia. Saudi Med J 2007;28:1414-7.
Linthorst Homan MW, Spuls PI, de Korte J, Bos JD, Sprangers MA, van der Veen JP. The burden of vitiligo: Patient characteristics associated with quality of life. J Am Acad Dermatol 2009;61:411-20.
Puri N. A clinico-epidemiological study on childhood vitiligo. Indian J Paediatr Dermatol 2016;17:101-3. [Full text]
Raju BP, Nagaraju U. Profile of childhood vitiligo with associated ocular abnormalities in South India. Indian J Paediatr Dermatol 2016;17:179-85. [Full text]
Borimnejad L, Parsa Yekta Z, Nikbakht-Nasrabadi A, Firooz A. Quality of life with vitiligo: Comparison of male and female Muslim patients in Iran. Gend Med 2006;3:124-30.
Ben-Gashir MA, Seed PT, Hay RJ. Are quality of family life and disease severity related in childhood atopic dermatitis? J Eur Acad Dermatol Venereol 2002;16:455-62.
Richards HL, Chong SL, Mason DL, Griffiths CE. The impact of psoriasis on healthy partners of patients with psoriasis. Br J Dermatol 2002;147 Suppl s62:40.
Eghlileb AM, Davies EE, Finlay AY. Psoriasis has a major secondary impact on the lives of family members and partners. Br J Dermatol 2007;156:1245-50.