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.
1. Bickers DR, Lim HW, Margolis D, Weinstock MA, Goodman C, Faulkner E, et al..The burden of skin diseases: 2004 a joint project of the American Academy of Dermatology Association and the Society for Investigative Dermatology.J Am Acad Dermatol2006;55:490–500.
3. Carroll CL, Balkrishnan R, Feldman SR, Fleischer AB Jr, Manuel JC.The burden of atopic dermatitis: impact on the patient, family, and society.Pediatr Dermatol2005;22:192–199.
4. Rees J, O’Boyle C, MacDonagh R.Quality of life: impact of chronic illness on the partner.J R Soc Med2001;94:563–566.
5. Turnbull AP, Turnbull R, Poston D, Beegle G, Blue-Banning M, Diehl K, et al.Turnbull AP, Brown I, Turnbull HR.Enhancing quality of life of families of children and youth with disabilities in the United States.Family quality of life
: an international perspective2004.Washington, DC:American Association on Mental Retardation;51–100.
6. Basra MKA, Finlay AY.The family impact of skin diseases: the greater patient concept.Br J Dermatol2007;156:929–937.
7. Basra MKA, Sue-Ho R, Finlay AY.The family dermatology life quality index
: measuring the secondary impact
of skin disease.Br J Dermatol2007;156:528–538.
8. Cronbach LJ.Coefficient alpha and the internal structure of tests.Psychometrika1951;16:297–334.
9. Sampogna F, Tabolli S, Di Pietro C, Castiglia D, Zambruno G, Abeni D.The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the family dermatology life quality index
.J Eur Acad Dermatol Venereol2012doi: 10.1111/j.1468-3083.2012.04682.x.
10. Tabolli S, Pagliarello C, Uras C, di Pietro C, Zambruno G, Castiglia D, et al..Family burden in epidermolysis bullosa is high independent of disease type/subtype.Acta Derm Venereol2010;90:607–611.
11. Basra MKA, Edmunds O, Salek MS, Finlay AY.Measurement of family impact of skin disease: further validation of the Family Dermatology Life Quality Index
(FDLQI).J Eur Acad Dermatol Venereol2008;22:813–821.
12. Rugman AM, Collinson SRugman M, Collinson S.International culture.International business2012:6th ed..UK:Pearson Education;132–163.
13. McGoldrick M, Giordano J, Garcia-Preto N.Ethnicity and family therapy2005:3rd ed..New york:The Guilford Press.
14. Gånemo A.Quality of life in Swedish children with congenital ichthyosis.Dermatol Rep2010;2:18–20.
15. Akiyama M, Sawamura D, Shimizu H.The clinical spectrum of nonbullous congenital ichthyosiform erythroderma and lamellar ichthyosis.Clin Exp Dermatol2003;28:235–240.
16. Kamalpour L, Rice ZP, Pavlis M, Veledar E, Chen SC.Reliable methods to evaluate the clinical severity of ichthyosis.Pediatr Dermatol2010;27:148–153.
17. Karadağ A, Akdeniz N, Bilgili S, Özkol H, Çalka Ö, Dalkiliç A.Dermatology life quality index in various skin diseases among hospitalized patients.J Turk Acad Dermatol2012;6:1–7.
18. Sebaratnam DF, Frew JW, Davatchi F, Murrell DF.Quality of life measurement in blistering diseases.Dermatol Clin2012;30:301–307.
19. Baubet T, Ranque B, Taïeb O, Bérezné A, Bricou O, Mehallel S, et al..Mood and anxiety disorders in systemic sclerosis patients.Presse Med2011;40:e111–e119.
20. Reinhard SC, Given B, Petlick N, Bemis AHughes R.Supporting family caregivers in providing care.Patient safety and quality: an evidence-based handbook for nurses2008:1st ed..USA:AHRQ;341–404.
21. .Grounded by psoriatic arthritis. Psoriasis Advance
, 2010; 8, pp. 12–13.
22. Cinar FI, Unver V, Yilmaz S, Cinar M, Yilmaz F, Simsek I, et al..Living with scleroderma: patients’ perspectives, a phenomenological study.Rheumatol Int2012;32:3573–3579.
23. Ongenae K, Van Geel N, De Schepper S, Naeyaert JM.Effect of vitiligo on self-reported health-related quality of life
.Br J Dermatol2005;152:1165–1172.
24. Sampogna F, Gisondi P, Tabolli S, Abeni D, Alotto M, Antonelli G, et al..Impairment of sexual life in patients with psoriasis.Dermatology2007;214:144–150.
27. Rillotta F, Kirby N, Shearer J, Kober RMichalos AC, Diener E, Glatzer W, Moum T, Vogel J, et al..A comparison of two family quality of life
measures: an Australian study.Enhancing the quality of life of people with intellectual disabilities2011:1st ed..Netherlands:Springer;305–348.
28. Mactavish JB, Schleien SJ.Re-injecting spontaneity and balance in family life: parents’ perspective on recreation in families that include children with developmental disability.J Intellectual Disabil Res2004;48:123–141.
29. Eghlileb AM, Davies EEG, Finlay AY.Psoriasis has a major secondary impact
on the lives of family members and partners.Br J Dermatol2007;156:1245–1250.
Keywords:© 2013 Egyptian Women's Dermatologic Society
family dermatology life quality index; family quality of life; health-related quality of life; secondary impact