title: Quality of life among adults with epidermolysis bullosa living with a gastrostomy tube since childhood.
abstract: Epidermolysis bullosa (EB) is a rare genetic condition characterized by blistering to the skin and internal mucous membranes arising from mild mechanical trauma. The impact on those affected can be significant. They might have increased nutritional requirements because of blistering, chronic wounds, infection, and loss of exudates, and nutritional intake might be compromised because of oropharyngeal blistering and strictures, resulting in malnutrition in many patients. Placement of gastrostomy tubes can help some patients meet nutritional requirements. We report a recent study on how EB patients and their families approached the issue of whether to have a gastrostomy tube placed and how such tubes affect quality of life. Our findings include important insights for clinicians and families about how patients experience life with a gastrostomy. We show how the process of consent can be improved and how patients with a gastrostomy tube can feel more in control of their lives.
authors.affiliation: St Thomas' Hospital, London, United Kingdom Lynne.Hubbard@gstt.nhs.uk.
authors.forename: Lynne D
authors.initials: LD
authors.lastname: Hubbard
authors.affiliation: St Thomas' Hospital, London, United Kingdom.
authors.forename: Kattya
authors.initials: K
authors.lastname: Mayre-Chilton
mesh_terms: D000293:Adolescent; D000328:Adult; D004820:Epidermolysis Bullosa / Q000601:surgery*; D005190:Family / Q000523:psychology; D005260:Female; D033062:Friends / Q000523:psychology; D005774:Gastrostomy / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009752:Nutritional Status; D011788:Quality of Life; D015430:Weight Gain; D055815:Young Adult
keywords: content analysis; health outcomes; hereditary diseases; illness and disease; interviews; lived experience; quality of life