Health-Related Quality of Life in Hereditary Transthyretin Amyloidosis Polyneuropathy: A Prospective, Observational Study

Key Information
Source
Orphanet Journal of Rare Disease
Year
2020
summary/abstract

Hereditary Transthyretin Amyloidosis Polyneuropathy is a rare life-threatening neurologic disease that imposes considerable mortality and it is associated with progressive related disabilities. In this study, we aimed to assess the effect of the disease across health-related quality of life dimensions, in both carriers of the mutation and patients, to compare health-related quality of life with general population, as well as to explore health-related quality of life prognostic factors among patients, including disease progression and treatment. This study was a multi-institutional, longitudinal, prospective, observational study of hereditary Transthyretin Amyloidosis Polyneuropathy Portuguese adult subjects enrolled in the Transthyretin Amyloidosis Outcomes Survey.

Abstract Source
https://pubmed.ncbi.nlm.nih.gov/32143656/
DOI
10.1186/s13023-020-1340-x
Authors
Mónica Inês, Teresa Coelho, Isabel Conceição, Lara Ferreira, Mamede de Carvalho, João Costa.
Organisation
Instituto de Medicina Molecular, Portugal; Andrade's Center for Familial Amyloidosis, Portugal; Hospital de Santo António, Portugal; Hospital de Santa Maria, Portugal; University of the Algarve-ESGHT, Portugal; Centre for Health Studies & Research, University of Coimbra, Portugal; Universidade de Lisboa, Portugal