SG14 Foot care management in epidermolysis bullosa: a systematic review and thematic synthesis of qualitative literature
Authors: Divya Khanna, Ajoy Bardhan, Natasha Harper, Adrian Heagerty
Journal: British Journal of Dermatology (2024)

Abstract Epidermolysis bullosa (EB) describes a rare, prototypic group of inherited dermatoses exhibiting ultrastructural defects in the dermoepidermal junction. This results in cutaneous blistering in response to seemingly disproportionate mechanical force. The feet are commonly affected, with approximately 90% of patients requiring podiatric intervention, due to wounds arising from weight bearing, footwear and unintentional injury. Presentation varies by EB subtype: blistering, ulceration, scarring, hyperkeratosis, calluses, corns, nail dystrophy, pseudosyndactyly and mitten deformities may be seen. The most frequently affected anatomical sites reflect areas of plantar pressure and friction, namely the hallux, heel and metatarsal heads. A deleterious cascade ensues, with resultant altered gait impairing the biomechanical function of the proximal ‘kinetic chain’. This culminates in degenerative arthralgia, muscle wasting and eventual multifactorial mobility reduction, with profound impact upon quality of life. Improved foot care in EB requires comprehensive insight into the lived experiences and beliefs of patients, carers and healthcare professionals, best explored using qualitative methodology. A systematic search for peer-reviewed, English-language, qualitative literature published before October 2023 was conducted on MEDLINE, Embase, PubMed, PsycInfo and Google Scholar databases. Titles and abstracts were screened to identify studies with methodologies enabling exploration of foot care in EB, with duplicate studies excluded. In total, 32 such studies were identified, which were read in their entirety. Of these, 12 studies featured explorations of foot care in EB. Reference lists were read to identify grey literature not already retrieved in the search, yielding one additional study. Three interdependent sets of themes influencing foot care in EB emerged. The first set, titled ‘psychosocial impact’, included the following themes: activities of daily living, interpersonal dependence, unfulfilled desire, and psychological wellbeing. The second set, titled ‘physical symptoms’, included the following themes: pain, wound care and mobility. The final set, titled ‘understanding of EB’, included the following themes: contagion, the expert patient, and EB specialist healthcare accessibility. The literature identified the importance of holistic foot care management in patients with EB, as the psychosocial consequences of physical symptoms impacted quality of life more than the presence of physical symptoms alone. Frustration arising from poor access to healthcare professionals with knowledge of EB coexisted with minimal societal understanding of the condition, additionally complicating foot care management. No qualitative literature was retrieved that focused solely upon foot care management in EB. These findings indicate a need for future research to explore this notable knowledge gap, and to inform a reorientation and update of current EB foot care guidelines that, through inclusion of elements encouraging holistic management, no longer focus exclusively upon physical symptoms.