Trusted Resources: Education
Scientific literature and patient education texts
From older to younger: intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy – a plain language summary
source: Future Rare Diseases
year: 2023
authors: Carla Roma Oliveira, Álvaro Mendes, Isabelle Lousada, Liliana Sousa
summary/abstract:What is this summary about?
This is a plain language summary of an article originally published in European Journal of Human Genetics. Transthyretin amyloidosis (ATTR) is a disease that affects the heart and nerves of those it afflicts. One inherited form of ATTR is particularly common among people of Portuguese descent and presents primarily as a neurologic disease termed familial amyloid polyneuropathy (FAP).
What were the results?
This study showed the relevance of communication from older to younger generations, primarily women, among Portuguese families with FAP. There were 4 major patterns of communication, which were in general supportive and informative. This study suggests opportunities for healthcare providers to help their patients regarding communications of inherited diseases within their families.
What do the results mean?
This study showed the benefits of positive intergenerational communications when discussing inherited diseases in families.
organization: Associação dos Lares Ferroviários, Portugal; University of Porto, Porto, Portugal; Amyloidosis Research Consortium, Boston, MA, USA; University of Aveiro, Aveiro, PortugalDOI: 10.2217/frd-2023-0021
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