The problem of pain and its assessment in children with epidermolysis bullosa

Abstract

Goal. Currently, there is an increasing interest in the treatment and improvement of the quality of life of patients with rare chronic diseases, and one of the urgent issues remains the problem of pain syndrome assessment and prevention. The purpose of the review article was to study the problem of pain and its assessment in children with epidermolysis bullosa. Theoretical justification. In the article, the problem of pain is considered as a complex biopsychosocial phenomenon, according to the results of a theoretical review, the main provisions of the concept of the multifactorial nature of pain are presented, which must be taken into account when selecting tools for assessing pain when working with gene dermatoses (epidermolysis bullosa) in childhood. Based on the analysis of Russian and foreign studies, a number of the most problematic areas in the assessment of pain in children are identified. Results and their discussion. According to the results of the analysis of a number of studies, the description of the main manifestations of epidermolysis bullosa and possible causes of pain is given. The biopsychosocial multifactorial nature of pain is considered, its neurobiological, psychological and functional consequences are presented, and on the basis of the research presented, conclusions are drawn for the first time about the principles of selecting the most effective tools for assessing pain and its impact on the vital activity of children with a chronic incurable disease. Pain assessment should include children’s previous experiences and expectations, coping strategies and pain relief resources, and communication features with caring adults. All forms of epidermolysis bullosa are characterized by pain and discomfort, and their elimination plays a key role in terms of the patient’s well-being and quality of life.