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ORIGINAL ARTICLE
Year : 2022 | Volume
: 42
| Issue : 1 | Page : 40-44
Impact of childhood atopic dermatitis on family: correlation with disease severity
Azza M Abdel-Maguid1, Esraa N Abd El Salam2, Hisham D Gaber1
1 Department of Dermatology, Venereology & Andrology, Faculty of Medicine, Assiut University, Assiut, Egypt
2 Department of Dermatology Student Hospital, Assiut University, Assiut, Egypt
Correspondence Address:
Esraa N Abd El Salam
Masters Degree in Dermatology, Venereology & Andrology Diseases; Student Hospital, Assiut University, Assiut
Egypt
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/ejdv.ejdv_1_21
Background Atopic dermatitis (AD) is a common skin disease that not only severely burdens patients but also their families and society. AD is a chronic inflammatory disease that is usually detected in childhood.
Objectives We aim to evaluate the quality of life of parents of children with AD and to crosscheck it with the intensity of the disease.
Patients and methods This is a cross-sectional study, where the data of parents of 100 children with AD were collected from the outpatient clinic of the Dermatology, Venereology, and Andrology Department, Assiut University Hospitals, from May 2017 to May 2019. Parents answered the validated Arabic version of the Dermatitis Family Impact (DFI) questionnaire. The disease severity was assessed using the SCORAD index.
Results Families of children with severe dermatitis had quite high DFI scores (16.37±3.727) compared with the families of those with dermatitis of moderate intensity (12.10±3.356) and dermatitis of low intensity (8.50±0.707) (P<0.001). It was observed that the impact of dermatitis on families had a positive significant correlation with the degree of intensity of AD (P<0.001, r=0.658). The highest-scoring DFI domains were sleep time, followed by a feeling of tiredness, emotional stability, general life, household work, and expenditure.
Conclusion AD directly affects the quality of life of patients’ parents, and the adverse effects on the quality of life are significantly correlated with the disease severity.
Keywords: atopic dermatitis, Dermatitis Family Impact questionnaire, quality of life
Atopic dermatitis (AD) has become increasingly prevalent in children in the past few decades [1]. It is distinguished by recurring eczema lesions with intense pruritus and skin dryness. AD specifically affects children and infants, drastically affecting their quality of life as well as that of their families [2]. Since AD usually manifests in early childhood or infancy, its ongoing course and frequent relapses heavily burden children and their caregivers, even affecting the entire family [3].
Early infancy is challenging for all parents. AD, as a chronic disease, can be a major challenge with a heavy toll on parents during this already sensitive period of their children’s life. Complicated treatment regimens and their challenges, restrictions of normal family life, and tending to an eczema-affected child lead to exhaustion and feelings of hopelessness among parents [2].
Several tools were used to evaluate the quality of life of children with AD and their parent/caregivers. The Dermatitis Family Impact (DFI) questionnaire is an insightful tool that comprehensively determines the effects of children’s AD on their parents’ lives [4].
Although the effects of AD on families had been studied in many countries, to the best of our knowledge, the particular impact of childhood AD on the quality of life of parents has not been investigated in Egypt to date. This study aims to assess the quality of life of parents of children with AD and to correlate it with the intensity of the disease.
Patients and methodsThis is a cross-sectional study that was carried out at the Dermatology, Venereology, and Andrology Department, Assiut University Hospitals, from May 2017 to May 2019, which has been approved by the institutional review board. Privacy and confidentiality of all data were assured. The study included parents of 100 children with AD who fulfilled Williams et al.’s [5] criteria.
Inclusion criteria
The children included were between 6 months and 12 years old, diagnosed with AD according to Williams et al.’s [5] criteria.
Exclusion criteria
Families with children suffering from any significant medical or dermatologic condition other than AD that could negatively affect the family’s quality of life, for example, psoriasis, asthma, vitiligo, diabetes mellitus, etc., were excluded. The reason behind this is that these conditions could impair the estimation of the impact of AD on families.
Approach to the patient
Full assessment of history, including detailed personal history, history of present illness, and medical and family history, was performed.Clinical examination and assessment of disease severity were performed.The severity of AD was evaluated using the SCORAD index (SCORing Atopic Dermatitis) [6]. Patients were divided into three categories: those with mild (SCORAD <20), moderate (SCORAD 20–40), and severe disease (SCORAD >40) [7]. The clinical examination and evaluation of the disease were performed by the same physician who interviewed the family to determine their quality of life.The Arabic version of the DFI questionnaire was used.The DFI was developed by Lawson et al. [4] and is efficient and reliable for gauging the impact of the disease on families with children with AD. The Arabic DFI was validated by Al Robaee [8] by following the rules for translation and validation.
This questionnaire evaluates the impact of AD on specific family functions with questions on effects on meal preparation, household work, sleep, fatigue and exhaustion, shopping time, leisure time and entertainment, expenses, mood and emotional stress, relationship among family members, and general life.
Scoring system (Tick-box method)
The questionnaire includes 10 questions. The scoring of each question ranges from 0 to 3: not at all=0, a little=1, a lot=2, and very much=3. The score is summed. The minimum DFI score is 0 (=no impact on the life of the family), while the maximum score is 30 (=maximum effect on the life of the family). For the analysis, a score of 0–5 was considered to indicate normal quality of life, 6–10 as low quality of life, 11–20 as moderate effect on quality of life, and more than 20 as considerable effect on quality of life.
Statistical analysis
SPSS (Statistical Package for the Social Science, version 20; IBM, Armonk, New York, USA) was used to acquire and analyze the data. Perpetual data were expressed in the form of mean±SD or median (range), while nominal data were expressed in the form of frequency (percentage).
The χ2 test was used to rank the nominal data of different groups in the study, while the Student t test ranked the mean of different two groups and the analysis of variance test was used for more than two groups. Pearson correlation was utilized to gauge the correlation between the impact of dermatitis on families and other continuous variables. The confidence level was maintained at 95%; therefore, the P value was significant if less than 0.05.
ResultsIn the current study, 110 children with AD were enrolled in accordance with the criteria of Williams et al. [5]. However, 10 children were excluded from the study because they refused to complete the questionnaire. The mean age of the studied children was 3.90±1.81 years. Of the studied children, 58 (58%) were females and 42 (42%) were males; 56% of the studied children came from urban areas. The data for 90 (90%) children were obtained from the mother. A positive family history of AD was present in 86 (86%) children ([Table 1]).
Table 1 Demographic data and dermatitis family impact score of the studied patientsThe age of onset ranged between 1 and 8 years, with mean age within 1.65±1.21 years, while the mean duration of disease was 2.58±1.29 years, with a range between 1 and 10 years. The majority (96%) of the children were receiving topical therapy. The mean severity score of dermatitis (SCORAD) was 48.43±13.81 and the majority (67%) of the children had severe dermatitis, while 28 (28%) children had moderate dermatitis and five (5%) children had mild dermatitis. On using the DFI, it was found that for 21 (21%), 68 (68%), and 11 (11%) children, the impact on quality of life was low, moderate, and high, respectively, and the mean DFI score was 14.96±4.02. It was observed that the impact of dermatitis on the family had an insignificant correlation with the age of the child (r=0.22, P=0.95), age of onset (r=0.12, P=0.08), and duration of dermatitis (r=0.25, P=0.40).
Children with severe dermatitis had significantly higher DFI scores (16.37±3.727) compared with those with moderate dermatitis (12.10±3.356) and mild dermatitis (8.50±0.707) (P<0.001). It was found that the impact of dermatitis on families had a positive significant correlation with the degree of severity (P<0.001, r=0.658) ([Figure 1] and [Table 2]).
Figure 1 Correlation between severity of atopic dermatitis (AD) and the Dermatitis Family Impact (DFI) questionnaire. The impact on the family of children with dermatitis had a positive significant correlation with the degree of severity of AD (P<0.001, r=0.658).
Table 2 Severity score of atopic dermatitis in relation to dermatitis family impactSleep time, feeling of tiredness, emotional stability, general life, household work, and expenditure were affected considerably. Other family functions and activities showed mixed levels of alterations.
Only a few families stated that one or more of their functions (food preparation, leisure, shopping, expenditure, relation with family, and general life) are optimal despite having a child with the disease in the family ([Table 3]).
Table 3 Reported disturbance in the functions and activities of families Discussion An AD-affected child can severely affect the quality of life of other family members. Our study showed that the quality of life of families with children with AD was moderately affected in 68% of the cases and severely affected in 11% of the cases. In agreement with our results, other studies reported that families with AD-affected children have hindered quality of life compared with others [4],[7],[9],[10].
Al Shobaili [7] carried out a study in the Qassim region of Saudi Arabia and reported that quality of life was somewhat impaired in 66.4% of the cases and severely affected in 6.9% of the cases. Recently, Hossny et al. [10] reported in their study, which was carried out on 85 children with AD recruited from the Pediatric Allergy and Immunology Unit, Children’s Hospital, Ain Shams University, that in more than half of the studied sample (55.4%), the quality of life (QOL) had been severely affected. The most affected physical aspects were itching and pain.
In the current study, the mean DFI score of parents of children with AD was 14.96±4.02, which is higher compared with that of other studies such as Beattie and Lewis‐Jones, in which it was 9.62±6.45, and Campos and colleagues, in which it was 6.6±4.5. In our study, 67% of children suffered from severe AD, justifying the higher mean DFI score.
The parents of children with severe AD showed statistically significantly higher mean DFI scores compared with those of children with mild and moderate AD, and there is a significant correlation between DFI and the severity of the disease. This fact confirms earlier reports [11],[12],[13],[14],[15],[16], confirming that the more severe the AD, the more the negative impact on parents’ quality of life. In turn, the child’s health is negatively affected.
Most children in the present study were using medication (96%) in the form of emollients, topical steroids, and systemic antihistaminic medications, which was similar to the reports of another study that was carried out with a sample of children living in Europe [17]. In that study, only 10% of the children did not undergo drug treatment, and this differed from the reports of another study by Campos et al. [18], in which most children did not use any medication. This can probably be attributed to the severity of AD in the patients in our study (mostly moderate and severe cases), when compared with the patients in the other study (mostly mild and moderate cases).
The emollient was the most used method of treatment since dry skin is very common in AD. Besides being a diagnostic criterion, emollients are part of the atopic treatment for xerosis and can also help with treatment of pruritus and pain [19].
A female predominance of AD (58% of the cases) was quite apparent in our study, similar to other previous studies [20]. However, other studies reported a higher percentage of males [21]. The dominance of females in our study could be attributed to the dependence and vulnerability of female children in families hailing from traditional communities. It is quite probable that the presence of the disease in female children leads to more anxiety and distress due to the parents’ worry over problems in marriage and postmarriage relationships.
DFI domain analysis in our study showed that the greatest effect was on the domain related to the disturbed sleep patterns of family members, in agreement with earlier reports [4],[7],[12],[14],[22]. This may be due to night-time scratching and itching, disrupting children’s sleep and causing awakening in the night. In turn, the need for parental assistance could cause parental frustration, exhaustion, and loss of sleep.
According to other researchers, parents can lose up to 1–2 h of sleep per night contending with symptoms of AD. This lack of sleep manifests in absence of coping skills and poor work performance, affecting the home and work for parents [23].
In our study, tiredness and emotional distress in patients were among the highest-scoring items of DFI domains, in agreement with earlier studies [4],[11],[12]. This may be because families seldom seek potential educational or psychosocial support, further exacerbating the frustration and stress.
Disturbance in the domains assessing expenditure on AD management was also found to be high in our study. This correlates with previous studies [4],[12],[14],[22]. This may be due to the fact that families with children with AD are recommended to adjust to lifestyle changes, such as restrictive diets, using special soaps and detergents, wearing special clothing or using natural-fibers linens, using dust mite protectors, and displacing carpets. These changes take some time to implement and could lead to a heavy toll on the family’s budget.
Disruption in preparation of food was among the lowest-scoring items in our studies, in agreement with previous studies [13],[22]. However, in other studies [12], this aspect was among the highest-scoring items; this difference could be attributed to the different ways of preparing food in the countries of the different studies.
Leisure activity, shopping, and relationships among family members were the least-scoring items of DFI in our study, in agreement with the results reported by authors [7],[11],[12]. The disturbance in family relationships was reported to be minimal in our study group, indicating strong family ties and attachments, which is a hallmark of our community.
ConclusionsAD in children directly affects the quality of life of their parents and this disturbance is significantly correlated with the severity of the disease. Disturbance in sleep patterns scored the highest among the items of the questionnaire in families with children with AD, followed by feelings of tiredness, emotional instability, general life, household work, and expenditure.
Recommendations
A multidisciplinary management approach could ameliorate the negative effects on the quality of life of families with children affected by AD. More studies could help devise educational programs for parents of AD-affected children to decrease the burden of the disease.
Acknowledgements
The authors thank all the participants and families who took part in this study.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References
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