Single German centre experience with patient journey and care-relevant needs in amyloidosis: The German AMY-NEEDS research and care program.
Sandra Michaela Ihne-SchubertMaria LeberzammerMarcel WeidgansStefan FrantzHermann EinseleStefan KnopTorben SchubertTanja BratanStefan StörkSilke NeuderthPublished in: PloS one (2024)
The journey of patients with amyloidotic disease, their contact partners and needs at different stages were characterized in detail within the German health care system. An amyloidosis-specific care concept has to master the multitude of interfaces connecting the numerous treatment providers involved with the amyloidosis centre and GPs as key players. Telemedical approaches could be a promising and well-accepted option allowing optimal coordination and communication.