Skin is an extraordinary structure. It is frequently damaged because it is directly in the ‘firing line’ and, for this reason, skin diseases are very common 1.
In the past decades, measurement of quality of life (QoL) in different diseases has become increasingly more important in medical researches. Knowledge of the impact of disorders on the QoL has become increasingly more important in the sense of a more holistic understanding of diseases. This may lead to more effective therapies 2.
QoL of individuals is closely related to the QoL of those around them such as partners and because of the nature of many diseases and the way treatment is applied, the QoL of a partner may be more impaired than that of the patient 3.
Family caregivers may experience a major impact on their lives such as physical and mental exhaustion, social disruption, marital problems, and financial implications 4. The concept of family quality of life (FQoL) has been described as being a situation where ‘The family needs are met and family members enjoy their life together as a family and have a chance to do things that are important to them’ 5.
The magnitude of this impact may be quite variable depending on the diagnosis of the skin disease, its duration, severity, the age of the patient and the family member, and above all on the relationship between them 6.
The aim of this study is to identify the impact of skin diseases on the QoL of the patient’s household family members.
Patients and methods
This study was carried out between July 2011 and May 2012 in the outpatient clinic of the Dermatology and Andrology Department of Benha University Hospital. One hundred adult family members of patients who were considered caregivers of patients with different skin conditions were included in this study. Inclusion criteria included only adult caregivers (≥18 years old) who shared the same home of a patient with only a dermatological disease. We excluded all caregivers who had any severe illness or disability.
All adult caregivers, whether they were a family member or a spouse to the patient, were provided a brief introduction about the nature of the study and information sheets to describe the aim of the study. Before data collection, a written informed consent that was approved by the Ethics Committee of Human Research Benha University was signed. Demographic information about the family members and patients was recorded. Detailed semistructured interviews were conducted with the participants away from the patient to identify how the patient’s skin disease can affect the family members’ QoL. At first, participants were encouraged to speak in detail about all the possible ways they believed that their lives had been affected by the patients’ skin disease. Later on, enquiries were made on the basis of the family dermatology life quality index (FDLQI) 7.
The FDLQI total score was calculated by summing the score of each question, resulting in a maximum of 30 and a minimum of 0. The higher the score, the more the QoL impaired. The participants were divided into two disease category groups: inflammatory and noninflammatory. Then, the FDLQI scores between the two disease categories were compared 7. Each group was analyzed to examine the relationship between different diseases in terms of their impact on FQoL.
The data were coded and verified before data entry. All statistical analyses were carried out using the statistical package for social sciences (SPSS version 19.0.0; SPSS Inc., Chicago, Illinois, USA). Qualitative and quantitative data were assessed using the χ2-test and independent-samples t-test, respectively. Two-tailed partial correlation coefficient (r) was used to assess the relationship between different skin diseases (P>0.05, insignificant; P<0.001, highly significant). Reliability: internal consistency was assessed using Cronbach’s alpha (α) coefficient 8, which expresses the degree of consistency of the items.
A total of 100 family members participated in this study. Their sociodemographic details are shown in Table 1. The mean age of the family members was 36.3 (range 18–67) years, with 74% women and 26% men. The mean size of the families was 7.6; 59% of them lived in rural areas. Most of the family members were married (82%) or uneducated (41%), and either one of the parents (37%) or spouses (34%) was the caregiver. Most of the caregivers were housewives (54%). The mean age of the patients was 25.4 (range 18–67) years. All patients had one of 17 skin diseases (mean disease duration=26.2 months) classified into two groups, where patients in group I had nine different inflammatory dermatoses, whereas those in group II had eight different noninflammatory dermatoses.
Figure 1 shows that skin diseases had a significant impact on FQoL on those living in urban areas than those living in rural areas (P<0.05). The impact of inflammatory skin diseases on family members was highly significant (P<0.0001) than that of noninflammatory ones (Table 2). Furthermore, Fig. 2 shows a highly statistical significant difference in the impact of inflammatory skin diseases on certain FQoL domains, for example physical well-being, leisure activities, housework, and job/study (P<0.001). However, there was only a statistically significant difference (P<0.05) in the impact of inflammatory dermatoses on the burden of care domain.
Table 3 shows that ichthyosis had a high statistically significant impact on FQoL (P<0.001) among other inflammatory skin diseases, except for bullous diseases, where there was an insignificant statistical difference between them (P>0.05). Similarly, bullous diseases had a statistically significant difference on FQoL (P<0.05) compared with other inflammatory diseases, except for urticaria, where there was an insignificant statistical difference between them (P>0.05).
However, the impact of vitiligo and scleroderma on FQoL showed a highly statistically significant difference (P<0.01) in relation to other noninflammatory skin diseases. Furthermore, there was a statistically insignificant difference in the impact on FQoL in relation to other skin diseases in the same group II (P>0.05). Details are shown in Table 4.
Table 5 shows the impact of different skin diseases on individual items of FQoL. Most dermatoses included in this study constituted heavy financial burden, except leprosy, pityriasis versicolor, and viral warts, which were moderately affected. Emotional domain (psychological aspects of life) was the second most frequently expressed aspect of families’ lives. Most of the skin diseases included in this study had a severe effect on the emotional domain (mean score=1.95), except for acne vulgaris, psoriasis, eczema, urticaria, pityriasis versicolor, melasma, viral wart, and milia, which had a moderate effect.
Social life domain was severely affected in the majority except in psoriasis, eczema, urticaria, alopecia areata, pityriasis versicolor, viral warts, hemangioma, and milia, which had a mild to moderate effect. Urticaria was the only skin disease included in this study that had a mild effect on the people’s reaction domain. The remaining diseases had either a moderate or a severe effect.
Psoriasis, ichthyosis, urticaria, bullous disease, seborrheic dermatitis, vitiligo, alopecia areata, and hemangioma had a severe effect on the burden of care domain. The rest had a moderate effect, except for milia, which had no effect. Ichthyosis, urticaria, bullous diseases, and scleroderma had a severe effect on the physical well-being, whereas alopecia, pityriasis versicolor, melasma, wart, and hemangioma had a mild effect.
The preponderance of diseases in this study had a moderate effect on relationships, except for ichthyosis, vitiligo, and viral warts, which had a severe effect. At the same time, there was no effect for melasma, hemangioma, and milia. Unlike bullous diseases, which had a severe effect on the job/study item, melasma, viral warts, and milia had no effect at all. Although most of the skin diseases in this study had mild to no effect on the item of leisure activities, acne vulgaris, eczema, ichthyosis, bullous diseases, and scleroderma had a moderate effect, whereas urticaria was the only disease that had a severe effect. Surprisingly, none of the diseases in this study had a severe effect on the housework item. Psoriasis, leprosy, ichthyosis, urticarial, bullous diseases, seborrheic dermatitis, and scleroderma had a moderate impact on the housework item.
Factor analysis of the data identified two main factors that were retained with eigenvalues greater than 1. The first and the second smaller factors had an eigenvalue of 3.685 and 1.395, respectively. The two factors together accounted for about 50.8% of the common variance, which was higher than the minimum recommended (i.e. 50%) for a stable factor solution. The two extracted factors were significantly interrelated (P<0.05), which suggests the unidimensionality of the scale (Table 6 and Fig. 3).
Items were loaded on each of the two components with standard regression coefficients of more than 0.50. The assignment of a particular item to a component was based on a higher loading value (Table 7). Factors were labeled as physical impact, which included five items (physical well-being, impact on relationships, leisure activities, additional housework, and effect on job/study), and psychosocial impact, which included six items (emotional impact, people’s reaction, social life, burden of care, and extra household expenditure).
Skin diseases not only affect patients’ lives but may also potentially affect different aspects of life of the patient’s family (i.e. physical, psychosocial, and financial) 3,9. Caregivers’ life may be impaired, especially from a social point of view, as considerable time is needed to take care of the patient. However, the impact may also be psychological, especially because of the attitude of people toward a visible disease 10.
In this study, the impact of skin diseases on family members living in urban areas was significantly higher than those in rural areas. This could be because family members living in urban areas care much about appearance and become severely distressed even with the mild form of the disease.
Our FDLQI score on family caregivers was 15.4, which seemed to be high, especially compared with other studies that reported scores of 8.02 7 and 6.0 11. This could be attributed to the fact that the idea of FQoL reflects the belief that the family as a unit has a responsibility to meet the individual needs of each of its members, which may or may not be true across all cultures, as in some cultures, there is a much stronger collectivist orientation (as in Egypt) 12 in contrast to individualistic orientation (western countries) 13.
There was a highly statistically significant difference between the mean FDLQI score in group I (inflammatory skin diseases) compared with group II (noninflammatory skin diseases). There was also a highly statistically significant difference in the impact of inflammatory skin diseases on certain FQoL domains, for example physical well-being, leisure activities, housework, and job/study. Moreover, there was only a statistically significant difference in the impact of inflammatory dermatoses on the burden of care domain.
This was in agreement with Basra et al.7, who reported a highly statistically significant difference across the individual FDLQI items in physical well-being, leisure activities, housework, and employment/study, which was higher in the inflammatory group.
Ichthyosis had a highly statistically significant impact on FQoL among other inflammatory skin diseases, except for bullous diseases, for which there was an insignificant statistical difference. This was confirmed by Gånemo 14, who reported that congenital ichthyosis considerably impairs the QoL of afflicted Swedish children and their families than other skin diseases. This was because of the chronic nature of the disease and its characteristic widespread scaling and variable degree of erythema 15. Moreover, when children have a congenital disease, such as congenital ichthyosis, they have the disease from birth to the end of their life, and no cure has been found as yet 16.
Bullous diseases also showed a statistically significant difference on FQoL compared with other inflammatory diseases, except for urticaria, for which there was an insignificant statistical difference. This was also confirmed by Karadağ et al.17, who reported that pemphigus affects the QoL more negatively when compared with other skin diseases as pemphigus vulgaris is a life-threatening disease that requires long-term treatment with immunosuppressive agents, which may lead to serious side effects. Similarly, Sebaratnam et al.18 reported that the impact of bullous dermatoses on FQoL increases with body surface area involvement and disease severity.
Furthermore, Karadağ et al.17 found that patients with urticaria had a better level of QoL compared with patients with pemphigus. This was also in agreement with Bickers et al.1, who found that individuals with pemphigus experience greater impairment to their QoL than patients with vitiligo, which adversely affects their families.
The impact of vitiligo and scleroderma on FQoL showed a highly statistically significant difference in relation to other noninflammatory skin diseases. Our findings were in agreement with those of Karadağ et al.17, who found out that although vitiligo is not a life-threatening disease, it has a huge negative impact on the QoL and psychological state of patients and their families. In terms of scleroderma, Baubet et al.19 reported that scleroderma causes major depression and anxiety in both the patients and their families.
In our study, the top three FDLQI items were expenditure (2.45), emotional (1.95), and social life (1.92). This was in contrast to the Basra et al.11 study as they reported that the top three FDLQI items were emotional impact (1.0) and burden of care (1.0) and the lowest-scoring item was effect on employment or study (0.28). Our participants were dissatisfied with the health services offered to their patients in governmental hospitals. In addition, no comprehensive health insurance has been implemented so far. Extra financial burden forced parents or spouses to increase their work hours and to compromise the needs of other family members or turn to cheaper living choices.
The psychological aspect of life (emotional domain) scored the highest among FDLQI items, mostly in families with a patient suffering from any of the following diseases: ichthyosis, scleroderma, bullous diseases, vitiligo, lichen planus, alopecia areata, hemangioma, or leprosy. Basra and Finlay 6 found that parents of patients with ichthyosis experienced a great deal of frustration as they had to spend considerable time and money taking care of their child, which was in agreement with our results.
Social life was severely affected in nine patients with dermatoses out of 17. The most common themes were restrictions in going out and visiting or inviting family and friends. Furthermore, Reinhard et al.20 observed the impact of skin diseases on families’ social lives as it magnifies the isolation that family caregivers may experience.
People’s reaction was severely affected in nine patients with dermatoses out of 17. Some parents were upset because their children were bullied at school because of their appearance, whereas others did not like the way people looked at the patients’ skin. Sometimes, people asked ‘silly’ questions and they had to provide explanations about the patient’s skin disease. In a study on family caregivers of psoriatic patients 21, in the words of the wife of a patient with psoriasis: ‘The biggest hurt was from people looking at him like he is a leper. It was very hard’.
The burden of care giving affects family members’ physical and psychological well-being negatively 6. Our study supports this finding, as burden of care was frequently expressed by family members, mostly of patients with ichthyosis, bullous disease, psoriasis, alopecia areata, urticaria, seborrheic dermatitis, vitiligo, and hemangioma. They felt that looking after the patient takes a great deal of their time and many stressed on the responsibility of applying different creams during different times of the day, others had to remind the patient to apply treatment and take medicines on time, and for others it was the perceived need to keep a constant eye on the skin lesions.
Family members of patients with widespread dermatoses, for example scleroderma, bullous disease, ichthyosis, or urticaria, were the most affected in terms of physical well-being. Family members reported that caring for the patient affected their physical health adversely; others described this experience as tiring, exhausting, and hectic.
This was supported by Cinar et al.22, who reported that the majority of patients with scleroderma have difficulties in performing activities that require fine motor ability such as opening a can, holding glasses or a knife, and cooking. Hence, significant family support was needed for patients to develop efficient coping strategies and to be more optimistic about their disease.
Living with patients with skin disease places a strain on relationships with others, for example other family members, relatives, and workmates. In our study, the relationship item was moderately affected overall (1.2) but it was severely affected in patients with ichthyosis, vitiligo, and viral warts. Karadağ et al.17 also asserted that vitiligo reduces the level of self-confidence because of poor body image, which eventually leads to a negative impact on individual relationships.
The majority of participants refrained from discussing the effect on their sexual relationships, which in part may be because of the fear of seeming unfaithful to their partners. However, many authors 23,24 have reported a significant impact of some skin diseases on sexual relationships. Furthermore, other authors 25,26 have reported a direct relationship of stress, which is sometimes manifested by caregivers, even with the mildest skin diseases and low libido.
Direct or indirect effect on employment/study is another important aspect of life, mostly in patients with bullous disease who are severely affected (mean score =3), whereas patients with scleroderma, urticaria, eczema, psoriasis, ichthyosis, vitiligo, and leprosy were moderately affected. For some, it is simply not possible to take up any job because of the constant attention/care that the patient required, whereas for others, it is the frequent need to take time off their work either to attend to the patients’ needs or for hospital appointments. Our results were similar to those of a study carried out by Rillotta et al.27, in which 93% of the caregivers had to give up their job in order to care for a family member with a disability or illness, leading to a decrease in FQoL.
Although recreational activities are generally affected as family members can no longer carry on with their personal hobbies 28, this was not the case in our study as the leisure activity item came before the last scoring (0.74).
Surprisingly, increase in routine housework was the lowest-scoring item (0.61). Eghlileb et al.29 reported that 70% of participants stated that the treatment of their relatives or partners with psoriasis resulted in extra housework, which included extra laundry and washing because of messy, greasy treatment, and extra vacuuming including cleaning skin flakes off furniture. This was in contrast to our findings as psoriasis had a mild impact on the housework item.
As for the factor analysis of FDLQI, our results were in agreement with the findings of Basra and colleagues 7,11.
This study has shown that it is not only patients with skin diseases who experience an impact on their QoL but also that the life of the entire family is affected. This should be considered by healthcare service providers when formulating treatment plans or making treatment decisions to prevent destruction of the family unit. The FDLQI seems to be a useful tool to evaluate the burden of a skin disease on family caregivers and has been shown to be statistically reliable and valid.
Conflicts of interest
There are no conflicts of interest.
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