Abstract
Background:
Skin is the largest organ of the human body, and one of the most sensitive indicators of a child's general health. Skin disorders, especially among children, may cause an additional emotional and psychological stress to the patients and their family.
Aim:
We aim to compare the extent to which various skin diseases affect the quality of life among the pediatric age group (5–12 years) based on Children's Dermatology Life Quality Index (CDLQI) scores.
Materials and Methods:
A cross-sectional study of 453 patients who attended skin clinic at a regional hospital in Northern India between November 2015 and May 2017. The study consists of questions regarding dermatoses. Patients were evaluated using a standardized pro forma and a CDLQI questionnaire. The diseases with abnormal high proportions were evaluated by the control chart technique.
Results:
Out of a total of 453 pediatric patients identified for dermatoses, the average quality of life based on the CDLQI score did not show significant variation across different seasons (P < 0.522). Although the type of skin disorders (P < 0.001) had a significant effect on the quality of life of the children. Based on the CDLQI scores, following diseases have a significant adverse effect on quality of life of the patients – miliaria, atopic dermatitis, scabies, impetigo, and pediculosis capitis.
Conclusion:
Our study has shown that skin diseases, irrespective of the type, adversely impair the quality of life of the child and in turn the family, therefore, calls for an enhanced level of compassion and care.
KEY WORDS: Children's Dermatology life quality index, impact on life, pediatric dermatology, skin diseases
Introduction
Skin diseases are relatively common among people of all age groups in both developed and developing countries.[1] The pattern of skin diseases in any country is affected by various factors, including but not limited to surrounding ecology, environmental changes, religion based dietary habits, socioeconomic status, mental health, and literacy.[2,3] These factors tend to vary not only across countries but also from region to region, especially in large countries like India with diverse population.[4,5] Skin disorders cause emotional and psychological stress to the patients and their family, and the effect is amplified if the affected is a child. Measurement of impact of pediatric dermatoses is an important component of primary health care practice, since it can have serious psychological effects on the patient and family.[6,7,8] It is required to assist in clinical research and allocation of resources for children health care. There is enough evidence that community-based surveys help in detection and treatment of infectious and noninfectious skin diseases in children worldwide.[9,10,11]
Since the premises behind quality of life impairment in dermatology patients is the symptomatic discomfort and visibility of skin condition, leading to psychological distress; it is important to conduct an assessment of quality of life impact using a direct survey analysis. The Children's Dermatology Life Quality Index (CDLQI) was developed in 1995 as a tool to allow quality of life assessment of children with skin conditions (Lewis-Jones and Finlay).[12] Since then, a number of official translations over the last two decades internationally employing CDLQI to study the level of psychological distress due to skin diseases in children have been done. To the best of our knowledge, we have not come across any study which directly looks into the use of the CDLQI questionnaire to study the effect of different dermatoses, in a single setting in pediatric age group in India. Therefore, in this study, we compare the extent to which various dermatoses affect the quality of life among the pediatric age group on the basis of CDLQI.[12,13] CDLQI is a broad, self-administered, dermatology specific questionnaire for children from 5 up to 12 years of age suffering with skin diseases. It measures the impact of skin diseases on health-related quality of life among children.[12,13] CDLQI covers six domains (symptoms, feelings, routine daily activities, sports activities, work and school, personal relationships, and treatment) during the preceding 1 week. The higher the score, the worse is the quality of life.[12,13]
Furthermore, due to significant linguistic differences, and limited knowledge of English in rural parts of India, we believe that the original English version of the CDLQI is not conducive for the patients or their parents. To make the questionnaire more comprehensive, we developed an officially translated version of the questionnaire in local regional language, i.e. Hindi. Hindi is the most common spoken language of India, which has 22 major spoken languages in 720 dialects. The Hindi version of the CDLQI questionnaire uses the exact original text of the CDLQI. The official copy of Hindi translation is available on the School of Medicine, University of Cardiff webpage. [Figure 1]
Figure 1.
Official Hindi translation of Children's Dermatology Life Quality Index (CDLQI)
Materials and Methods
This cross-sectional study was conducted in the Department of Dermatology, Venereology and Leprosy, Era's Lucknow Medical College and Hospital, Lucknow, India over a period of 18 months from November 2015 to May 2017. Lucknow district and the adjoining areas have a diverse population, with varying levels of socioeconomic conditions, religious customs, and living habits and habitat, which are bound to have a wide spectrum of significant influence on skin disorders among pediatric age group. Since CDLQI is validated for patients between 5 and 12 years of age, in this study, patients of the defined age group and attending the dermatology OPD were included. A written informed consent was taken from the parents/guardians of the children. We excluded the patients who did not give consent to participate in the study or were not in the defined age group.
Initially, information on sociodemographic characteristics[14] like age, gender, education, socioeconomic status, parent's education and occupation, duration of the appearance of symptoms of the disease, size and extent of lesions, course of disease and history of previous treatments, immunization history of the patient, and developmental history were carefully collected and recorded in a standardized patient pro forma. Next, complete physical examination was done and photographed using 13-megapixel 2015 Samsung S5 camera.
Finally, the impact of disability on the life of patient was estimated using the CDLQI questionnaire scoring system. CDLQI scoring is based on five answer categories which are (1) “very much,” (2) “a lot,” (3) “a little,” and (4) “not at all.” Options 1–3 are scored as 3, 2, and 1, respectively. Option 4 is scored with a zero. The overall score was calculated by summing the results from each question, which yield a result between 0 and 30, with higher scores representing a greater impact on the quality of life.[14] Incomplete forms were processed as follows: up to two questions, if left unanswered were assumed irrelevant by the respondent, and therefore, they were each scored 0 out of 3. If more than two questions were unanswered, the entire questionnaire was rejected. Our initial sample consists of 500 patients between 5 and 12 years of age. Our data loss was about 10%. This led to a final sample of 453 patients. Paramedical staff assisted the children/parents having difficulty in filling out the questionnaire.
Data entry was made in Microsoft Office Excel 2016 (Home Edition) software, while the statistical analysis was executed in IBM SPSS Statistics 24 software®. Descriptive statistical analysis, which included frequency, percentages, mean, standard deviation, and median, was used to characterize the data and report the diversity of the sample employed in this research. Association with the factors was tested for significance using Chi-square test and P < 0.05 was considered statistically significant. The distribution of CDLQI[15] was tested by Kolmogorov–Smirnov Test (K-S Test). The group comparisons in this study were made by the rank-based nonparametric Kruskal–Wallis Test (K-W Test). The K-W test is also popularly known as ANOVA test and helps in comparing between two independent groups. It is used to determine if there are statistically significant differences between two or more groups of an independent variable on a continuous or ordinal dependent variable.
Results
Males and female patients (52.5% vs. 47.5%) were equally distributed. Majority of the cases belonged to the urban area (57.2%), were Hindus (62.3%), belonged to the poor social-economic class (56.3%), and had illiterate parents (father – 38.2% and mother – 45.9%). [Table 1]
Table 1.
Distribution of cases according to sociodemographic profile
Variable | Category | No. | Percent | Total |
---|---|---|---|---|
Gender | Male | 238 | 52.50 | 453 |
Female | 215 | 47.50 | ||
Area | Rural | 194 | 42.80 | 453 |
Urban | 259 | 57.20 | ||
Religion | Hindu | 282 | 62.30 | 453 |
Muslim | 142 | 31.30 | ||
Sikh/Christian | 29 | 6.40 | ||
Socioeconomic status | Upper-high class | 2 | 0.40 | 453 |
High Class | 17 | 3.80 | ||
Upper-middle class | 44 | 9.70 | ||
Lower-middle class | 135 | 29.80 | ||
Poor class | 255 | 56.30 | ||
Father’s education | Illiterate | 173 | 38.20 | 453 |
Primary | 31 | 6.80 | ||
Junior high school | 49 | 10.80 | ||
High school | 36 | 7.90 | ||
Intermediate | 91 | 20.10 | ||
Graduate and above | 73 | 16.20 | ||
Mother’s education | Illiterate | 208 | 45.90 | 453 |
Primary | 40 | 8.80 | ||
Junior high school | 76 | 16.80 | ||
High school | 47 | 10.40 | ||
Intermediate | 46 | 10.20 | ||
Graduate and above | 36 | 7.90 |
On applying the test of normality for scoring of the CDLQI on patients, the K-S test shows nonnormality (P < 0.0001) of the CDLQI used in this study. Therefore, we use rank-based nonparametric K-W test for the group comparisons. [Table 2]
Table 2.
Distribution of Children’s Dermatology Life Quality Index (CDLQI) scores
Variable | Kolmogorov–Smirnov test | ||
---|---|---|---|
| |||
Statistic | Degree of freedom | Significance | |
Scoring | 0.163 | 453 | <0.0001 |
The median quality of life did not differ significantly across various seasons (P value = 0.522) based on K-W Test Chi-square statistics. [Table 3]
Table 3.
Comparison of CDLQI score as per the seasonal variation
Factors | Seasons | ||||
---|---|---|---|---|---|
| |||||
Winter | Spring | Summer | Rainy | Total | |
No. of cases | 150 | 149 | 98 | 56 | 453 |
Mean CDLQI | 15.87 | 15.10 | 15.26 | 16.43 | 15.55 |
Std. Dev. | 7.45 | 7.35 | 7.04 | 6.64 | 7.23 |
Median CDLQI | 20.50 | 18.00 | 16.50 | 19.50 | 18.00 |
Significance Kruskal–Wallis Chi sq.=2.249, P=0.522
The most common skin diseases this in study are infestation (scabies and pediculosis capitis), papulosquamous (psoriasis, seborrheic dermatitis, and lichen planus), infection (fungal infection and impetigo), and eczema (contact and atopic dermatitis and polymorphous light eruptions). Next, based on median CDLQI scores, quality of life is worse affected for children suffering with infestation (24.00), vesicobullous (23.00), and eczema (21.00). [Table 4 and Figure 2]
Table 4.
Association of CDLQI with skin disorders
Skin disorders | No. of cases | Mean CDLQI | Sth. Dev. | Median CDLQI |
---|---|---|---|---|
Infestation | 136 | 22.49 | 1.08 | 24.00 |
Papulosquamous | 111 | 8.60 | 3.82 | 10.00 |
Infection | 55 | 13.35 | 5.32 | 10.00 |
Eczema | 47 | 18.62 | 5.16 | 21.00 |
Keratinization | 27 | 10.07 | 4.58 | 13.00 |
Pigmentary | 27 | 9.70 | 1.92 | 10.00 |
Vesicobullous | 23 | 17.35 | 8.59 | 23.00 |
Others | 27 | 18.19 | 9.21 | 20.00 |
Total | 453 | 15.55 | 7.23 | 18.00 |
Significance Kruskal–Wallis Chi sq.=278.25, P<0.001
Figure 2.
Bar graph showing the median Child Dermatology Life Quality Index (CDLQI) across different skin diseases (N = 453)
In terms of specific diseases, the CDLQI score is higher for miliaria (24.50), atopic dermatitis (24.00), scabies (23.00), impetigo (23.00), and pediculosis Capitis (21.00). [Table 5 and Figure 3]
Table 5.
Association of CDLQI with skin diseases
Diseases | No. of Cases | Mean CDLQI | Sth. Dev. | Median CDLQI |
---|---|---|---|---|
Scabies | 109 | 22.75 | 1.01 | 23.00 |
Psoriasis | 49 | 9.98 | 0.80 | 10.00 |
Pediculosis capitis | 27 | 21.41 | 0.57 | 21.00 |
Papular urticaria | 21 | 20.52 | 0.75 | 20.00 |
Fungal infections | 19 | 18.21 | 2.51 | 18.00 |
Contact dermatitis | 17 | 19.00 | 0.00 | 19.00 |
Polymorphous light eruptions | 17 | 4.88 | 1.54 | 4.00 |
Miliaria | 16 | 24.56 | 0.81 | 24.50 |
Seborrheic dermatitis | 16 | 11.33 | 0.50 | 11.00 |
Impetigo | 15 | 23.00 | 0.00 | 23.00 |
Vitiligo | 15 | 10.20 | 0.56 | 10.00 |
Atopic dermatitis | 14 | 21.20 | 5.22 | 24.00 |
Ichthyosis | 13 | 13.08 | 0.28 | 13.00 |
Leprosy | 12 | 10.00 | 0.00 | 10.00 |
Lichen planus | 12 | 15.67 | 0.98 | 15.00 |
Molluscum contagiosum | 11 | 7.91 | 1.04 | 8.00 |
PRP | 10 | 5.00 | 0.00 | 5.00 |
Others | 60 | 7.67 | 1.50 | 11.00 |
Total | 453 | 15.55 | 7.23 | 18.00 |
Figure 3.
Different skin diseases observed in this study: (a) epidermolysis bullosa dystrophica, (b) Norwegian scabies, (c) phrynoderma, (d) scabies, (e) panniculitis, and (f) tinea capitis
Discussion
The quality of life assessment plays an integral part in giving the insight into the patient's diseased life. Assessment about change in the quality of life also helps doctors to follow the signs of improvement of the clinical condition of the patient. The questionnaire needs to be formulated keeping in mind education, social, cultural, ethnic, and religious background of the patient. Unlike, other quality of life indices for adult patients like Dermatology Life Quality Index[16] that includes questions on the intimate life of the patients and can be considered offensive for Indian patients, CDLQI is more general and focuses on the daily activates of the children.[17] Since Hindi is the most widely spoken language in Northern India, officially approved translation of CDLQI in Hindi was used in this study. Furthermore, we believe that generalizing the CDLQI findings of other geographical regions like Eastern Europe (Jankovic et al.[18]), Central Europe (Tasoula et al.[19]), the Netherlands (De Jager et al.[20]), and Turkey (Eyüboglu et al.[21]), where acne is the most common skin disease among children, will not be suitable in Indian setting as the type and nature of skin diseases and their effect on the quality of life of the children can vary significantly. [Table 6]
Table 6.
Brief summary of findings from the major recent International CDLQI studies and their comparison with the current study
Authors of study | Year of study | Country of study | No. of participants | Common dermatoses |
---|---|---|---|---|
Jankovic et al.[18] | 5 days in May 2010 | Belgrade, Serbia | 478 Students | Acne was present in 71.6% of pupils (64.3% boys and 35.7% girls) Mean CDLQI score was 4.35 |
Tasoula et al.[19] | Feb. 2007 to Sept. 2009 | Greece | 1531 Adolescents | Acne prevalence was 51.2% affecting both sexes equallyThe median score of CDLQI was 4.02 |
De Jager et al.[20] | Sept. 2008 to Jan. 2010 | The Netherlands | 39 Children | The median score of CDLQI was 6.00 |
Most patients had more than 2–5 years of history of psoriasis before visiting the clinic | ||||
Eyüboglu et al.[21] | Not stated | Turkey | 164 Adolescents | The mean CDLQI score for boys was 8.5 and girls was 8.1The worsening in quality of life is not affected by adolescents’ age, severity, and duration of acne |
Current study | Nov. 2015 to May 2017 | Northern India | 453 Children | The median score of CDLQI is 18.00 and mean CDLQI is 15.55Diseases with significant adverse effect on quality of life of the children – miliaria, atopic dermatitis, and scabies |
Unlike the past European studies, where acne vulgaris was reported the most common skin disease among children, in the present study, we find that skin disorders like infestation, vesicobullous, and eczematous adversely affected the quality of life of the patients. Among these skin disorders, patients suffering with miliaria, atopic dermatitis, scabies, impetigo, and pediculosis capitis, papular urticaria, contact dermatitis, and fungal infection experienced most discomfort in their quality of life. Overall, patients suffering with these diseases either ticked “very much” or “a lot” in their CDLQI questionnaire with respect to the level of discomfort that the diseases had caused them toward there quality of life. Therefore, our study has shown that irrespective of the type of skin disease, there is a negative effect on the quality of life of children. Also, the adverse effect of dermatoses on the patient's quality of life does not show seasonal variation. Pärna et al.[22] found that patients with chronic skin diseases had lower DLQI and lower RAND-36 (Research and Development questionnaire comprising of 36 health-related quality of life questions) scores. The authors believe that these patients are perceived to higher physical limitations and pain, and lower emotional well-being and general health ratings compared with the control group in their study. In a study by Tekin et al.,[23] it was observed that psychosocial effect of pediatric psoriasis was shown to extend beyond the individual patients, highlighting the importance of addressing patients and their caregivers quality of life concerns in an integrated approach.
In terms of clinical implications of our study, we believe that our findings can assist clinicians in identifying the likely impact of disease and its management on day-to-day functioning and well-being, identifying common obstacles, and developing effective interventions to deal with these issues. This can be especially useful for children experiencing chronic skin diseases such as atopic dermatitis and psoriasis, where a cure is not assured, but an effective management plan can significantly alleviate the adverse effects of skin problem on daily activities. Furthermore, on a wider scale, quality of life questionnaires, in general, can act as an assessment tool to compare the efficacy of newer management options with already established treatment modalities for different skin diseases.
Finally, we believe that based on the warm climate experienced in Northern India, background of our patients involved in this study and skin diseases that they have experienced, to avoid any future occurrences of such diseases, and their effective management, patients should try to incorporate simple cleanliness and skin care practices in their daily life. These practices include taking short cold or lukewarm showers, avoiding skin exfoliation and scrubbing, wearing soft cotton clothes, especially loose cotton intimates next to the skin, and using pH balanced cleaning agents for the skin and regular, preferably twice daily moisturizing the skin. Other measures that can help are maintaining good personal, family and home hygiene, keeping nails short and clean, daily showers, daily change of clothes, and most importantly personal cleanliness like regular hand washing. In our view, these suggestions should be included in the local community-based guidelines, especially for illiterate patients (about 46% of our total sample) who attend the OPD of government and rural hospitals across India in vast numbers, not only as measures to mitigate skin diseases but also for the general well-being of the population at large.
Limitations
One of the major limitations of our study is the absence of the control group and differences in the quality of life status of children not affected with skin diseases. There is also a lack of follow-up evaluation of changes in patient's quality of life after appropriate management of their skin condition. Furthermore, India being a vast country, and our study being confined to Northern India, we believe that a multicentric approach would potentially provide a bigger spectrum in identifying the varying level of discomfort caused by different skin diseases among children across the country.
Conclusion
Skin diseases, irrespective of the type, adversely impair the quality of life of children and their family. Using a sample of 453 patients, we find that skin diseases directly impact different aspects of the patient's life such as academics, athletics, socializing, parental stress, and in certain cases even self-image of the patient. Therefore, this requires an enhanced level of compassion toward the patients. Also, we feel that there is an urgent requirement of a community-based realistic stepwise approach promoting social awareness about personal hygiene, basic education, and key prevention strategies to mitigate skin diseases among children.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
Acknowledgements
We would like to thank Dr. Faraz Mahmood Ali, Department of Dermatology, Cardiff University for working closely, and approving, and giving the kind permission on behalf of Dr. A. Y. Finlay to translate the CDLQI into Hindi and for his advice on the procedures for a properly validated translation. We also thank the patients and their parents for their participation in this study.
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