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Assessing the Impact of the Five Senses on Quality of Life in Mucopolysaccharidoses by Giugliani, Roberto; Harmatz, Paul; Lin, Shuan-Pei; Scarpa, Maurizio is a Biochemistry, Genetics and Molecular Biology article available to read on EtoBox.

What is Assessing the Impact of the Five Senses on Quality of Life in Mucopolysaccharidoses about?

## Background The mucopolysaccharidoses (MPSs) are lysosomal storage disorders associated with progressive multi-organ and skeletal abnormalities. Clinical manifestations can affect each of the five senses: hearing, vision, smell, taste, and touch. ## Main body of the abstract On 24–26 May 2018, 46 specialists with expertise in managing symptoms of MPS and experts specialized in evaluating and managing impairments in each one of the five senses gathered in Lisbon, Portugal at the “MPS & the five senses” meeting to discuss how loss of one or multiple senses can affect activities of daily living (ADL) and quality of life (QoL) in MPS patients and best practices in evaluating and managing the loss of senses in these individuals. The meeting confirmed that MPS can affect the senses considerably, but how these impairments affect ADL and overall QoL from a patient’s perspective remains unclear. A better insight may be achieved by prospectively collecting patient-reported outcome (PRO) data internationally in a standardized way, using a standard battery of tools. To identify relevant PRO tools, a systematic literature review and a selection of existing published questionnaires, focused on

Who reads Assessing the Impact of the Five Senses on Quality of Life in Mucopolysaccharidoses?

Author

Giugliani, Roberto; Harmatz, Paul; Lin, Shuan-Pei; Scarpa, Maurizio

Publisher

BioMed Central; Springer (Biomed Central Ltd.); [London]: BioMed Central, 2006-; Springer Science and Business Media LLC; Society for Mining, Metallurgy and Exploration Inc. (ISSN 1750-1172)

Published

2020

Language

EN

Field

Biochemistry, Genetics and Molecular Biology (Life Sciences)