Finalist
First Consensus Recommendations for Holistic Care in Hereditary ATTR Amyloidosis
by Lumanity for Alnylam
Summary of work
Hereditary transthyretin-mediated amyloidosis (ATTRv) is a rare, highly disabling, multisystemic disease. However, there are no universal standards in clinical practice for the coordinated, holistic care of ATTRv amyloidosis patients. The Amyloidosis Alliance patient advocacy group (PAG) highlighted the need for a holistic health and social care approach to reduce the burden of ATTRv amyloidosis for patients and their families.
This programme involved a 14-member joint patient advocate–healthcare professional (HCP) primary panel, which aimed to provide recommendations for the delivery of patient-centred holistic and multidisciplinary care based on the needs and priorities of patients with ATTRv amyloidosis and their families using an online, modified Delphi survey.
The programme highlighted the challenges associated with holistic care of patients and recognised the crucial contribution of PAGs and allied HCPs in supporting patients and their families. Through a consensus approach, the first published recommendations to recognise the value of the patient community in advocating for the needs of ATTRv amyloidosis patients and urge for a major shift in the current approach in its management has been achieved. Findings were presented at congresses, published in an article and a toolkit of guidance, and translated materials were shared with Alnylam countries and local PAGs.
Judges’ comments
Lumanity and Alnylam have really thought through this project and it has great results. The situational analysis is clear, as are the objectives. The consensus recommendations are powerful change drivers for ATTRv amyloidosis. It is a clear and well thought out approach to Consensus building and community engagement with the multidisciplinary team.
