Year: 2025
Type: article
Abstract: Epidermolysis bullosa (EB) refers to a group of rare skin disorders that cause skin fragility, where wounds and blisters can easily arise from mild physical stimuli [1]. Patients often face limitations in mobility (e.g., getting tired during long journeys, hikes, or walks can be quite challenging for them) and in sports. It may cause frustration if a beloved activity requires evaluating the risks of physical discomfort. Patients may notice others staring at them and they may frequently receive questions about their condition, which can be uncomfortable. Those around them may perceive EB as contagious, leading to social exclusion and a lack of social interaction. Because of these occurrences, patients are repeatedly confronted with their disease and constantly reminded of it. Individuals with EB may feel that they struggle to lead a “normal” life, because many activities necessitate assessing the risks of physical discomfort. Dependence on others (such as for wound care in areas that they cannot reach) can also represent psychological burden [1]. Guidelines have been developed to enhance the well-being of EB patients. For instance, planning activities, relaxation, and managing anxiety, tension, and cognitive attributions can be beneficial for them. Facilitating their participation in social life and encouraging peer support is useful. Providing psychosocial support to assist patients' families is also recommended. Additionally, raising global awareness of EB and addressing patients' psychosocial needs are important [2]. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient-Oriented Outcomes has previously demonstrated a broad perspective on professional support for patients with skin conditions. In an earlier position statement from the EADV Task Force [3], illustrative examples of certain factors of the Biopsychosocial-Spiritual Model [4] of illness and health can be found. In the cited manuscript, Finlay et al. [3] suggested nondrug methods and interventions that may enhance the quality of life for patients with persistent skin diseases who face quality of life impairments while receiving pharmacological therapy. In addition to biological factors, the authors proposed interventions focusing on psychological (e.g., cognitive therapy and psychological support), social (e.g., using cosmetic camouflage to hide visible skin symptoms and reduce potential social anxiety), spiritual, and religious (e.g., accessing inner resources for coping and healing through religious and spiritual support) factors as well [3]. In the current issue of the journal, Chernyshov et al. [5] announce the position statement of the EADV Task Force on Quality of Life and Patient-Oriented Outcomes on health-related quality of life assessment in epidermolysis bullosa, which can greatly assist professionals in supporting these patients. Readers of the journal will find specific recommendations regarding the use of age-appropriate health-related quality of life measurement tools for EB patients, as well as the methods for providing medical and psychological assistance to these individuals in the authors' valuable manuscript. The author declares no conflicts of interest.
DOI: 10.1111/ijd.17811
Author: Csanád Szabó
Institution: University of Szeged
Language: English
Subfield: Cell Biology
Domain: Life Sciences
Open Access status: hybrid
Estimated APC paid: $4,150
OpenAlex ID: W4409963891