The perceived quality of life in adult patients with inherited ichthyosis: a qualitative interview study

This qualitative interview study aimed to gain insight into the perceived impact of ichthyosis on the biopsychosocial quality of life of adult patients. Fifteen patients [with a diagnosis of autosomal recessive congenital ichthyosis (n = 10), X-linked ichthyosis (n = 3) and epidermolytic hyperkeratosis (n = 2)] highlighted the multifaceted impact of growing older with ichthyosis within the biologic (e.g. excessive scaling and overheating), psychological (e.g. low self-esteem and complex reproductive decision-making) and social domains (e.g. limited career options and being bullied). Suggestions for healthcare improvements include long-term management of ichthyosis, psychological support, societal awareness, medication reimbursement and research into reproductive and age-related issues.