Quality of Life and Psychosocial Needs of Children Suffering from Chronic Skin Diseases

Abstract

IntroductionThe inner world of an individual and his/ her relationship with the environment are expressed at the 'boundary', the biggest organ of our body - the skin [1]. The skin and psyche are most often linked in the studies including the following groups of disorders [2]: (1) psychophysiological dermatoses - primarily psychiatric diseases resulting in skin disorders and (2) secondary psychological disorders occuring as reactions to the visibility and the chronic course of skin diseases. According to Hong, Koo and Koo [3] skin diseases are mostly not life threatening, which is the reason why they receive less attention both medically and psychologically. However, individuals suffering from skin diseases, also suffer psychosocially, equally or even more than those with other chronic somatic diseases [4], especially children and youth [5].Children suffering from chronic skin diseases show more signs of depression and anxiety [6-8], a poorer self-image [9], and they estimate their quality of life lower than children with other diseases like cystic fibrosis, asthma, epilepsy and enuresis [6]. Studies show that among skin diseases, atopic dermatitis is most strongly related with negative indicators of mental health in children [7,10,11], which is explained multifactorially. Atopic dermatitis is a condition which is: (1) visible, (2) incurable in most cases, (3) causes sleeping problems, (4) causes constant itching, (5) can cause reactions of disgust from the environment [7,8,12].The psychological indicator most often studied in children with chronic skin diseases is the quality of life. According to the World Health Organization, the quality of life is defined as individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns (The WHOQOL Group, 1995). It includes several aspects - physical health, the psychological status, the level of independence, social relationships, personal beliefs and their relationship to the salient features of their environment [13]. The quality of life of children suffering from skin diseases is most often examined by quantitative methodology, questionnaires, predominantly CQOL (Child Health-Related Quality of Life) [14], CDQOL (Children's Dermatology Life Quality Index) [15] and CLQU (Children's Life Quality Index) [16]. Measures CQUL and CDQOL are based on the quality of life linked with physical health, while CLQU measures various aspects of children's lives. Both questionnaire structures contain certain bias. Children with lower life satisfaction due to their health condition will not differentiate in the first two questionnaires because the questions only refer to health. On the other hand, according to the CLQU factors [16], a child may be satisfied with family circumstances, the economic status, his/her academic achievement, s/he can positively perceive his/her future, and at the same time be dissatisfied with e.g. his/her health, appearance and social status due to a skin condition. Regardless of how intensely dissatisfied a child may be with his/ her aspects of life affected by a skin condition, his/her total life satisfaction will seem at least average because of the satisfaction with other aspects of life. Therefore, the results obtained by questionnaires need to be critically interpreted and complemented by qualitative methodology.In most studies of the quality of life of children suffering from skin diseases, at least a part of questionnaires was filled in by adults in their environment. Davies, Noll, DeStefano, Bukowski and Kulkarni [17] emphasize that adult perceptions can be significantly different from child perceptions. For example, unclear link between the severity of skin disease symptoms and the quality of life of children can be explained by physicians assessing the severity of symptoms, while in some cases parents assess the quality of their children's lives [18,19]. …