2024
DOI: 10.21203/rs.3.rs-4183211/v1
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“Living With a Question Mark”: Psychosocial Experience of Portuguese Young Adults at Risk for Hereditary Amyloid Transthyretin Amyloidosis With Polyneuropathy

José D. Pereira,
Catarina Costa,
Andreia Santos
et al.

Abstract: This study is the first to explore the psychosocial experience of young Portuguese adults at genetic risk for hereditary amyloid transthyretin amyloidosis with polyneuropathy (hATTR-PN), specifying developmental peculiarities of their experience with the disease. Sixteen semi-structured interviews were conducted with young adults coming for presymptomatic testing (PST) at a single genetics outpatient center in Portugal, and the data were analyzed thematically. The main findings suggest that the psychosocial ex… Show more

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