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Burden of disease

The Burden of Spinal Muscular Atrophy on Informal Caregivers

Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the time taken to care for patients suffering from SMA in European countries and the burden on their informal caregivers. We designed a cross-sectional study recording data from France, Germany, Spain and the United Kingdom.

Thu, 12/29/2022 - 12:22

A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis bullosa

Background/objective: Recessive dystrophic epidermolysis bullosa (RDEB) is a genetic collagen disorder characterized by skin fragility leading to blistering, wounds, and scarring. There are currently no approved curative therapies. The objective of this manuscript is to provide a comprehensive literature review of the disease burden caused by RDEB. Methods: A systematic literature review was conducted in MEDLINE and Embase in accordance with PRISMA guidelines.

Thu, 08/18/2022 - 12:24

Family caregivers' burden in inflammatory bowel diseases: An integrative review

Inflammatory bowel disease (IBD), including Crohn's and ulcerative colitis diseases, is characterized by clinical periods of remission and relapse. Excessive care stress can have long-term negative physical and psychological consequences not only for caregivers but also for the recipients of care. This integrative review aims to identify, describe, and synthesize the results of current available research focused on the burdens of IBDs on family caregiver. An integrative review was performed using Whittemore and Knafl methodology.

Mon, 03/22/2021 - 15:38