Official websites use. Share sensitive information only on official, secure websites. Both level of agreement and feasibility in practice of each recommendation was tested by two anonymised online Delphi voting rounds.
By comparison, PAGs recorded lower implementation levels. Further consideration is needed on how to evolve multidisciplinary services supported by allied HCPs and PAGs to address the complex needs of those affected by this disease. Keywords: nutritional support, organisation of health services, neuropathology, patient-centered care, patient participation, rehabilitation medicine. Led by a primary panel of patient advocates, plus physicians and allied healthcare professionals HCPs from specialist centres, this Delphi study aimed to evolve recommendations for the delivery of patient-centred multidisciplinary care based on the needs and priorities of patients and their families affected by hereditary transthyretin-mediated amyloidosis.
Consensus was sought on 50 draft recommendations from the wider clinical community mainly neurologists and cardiologists and representatives from patient advocacy groups invited from 27 countries, who also provided a benchmark assessment on the current application in practice of each recommendation. Our survey, translated into French, Spanish and Japanese, also invited anonymised written feedback from patient representatives and HCPs with a special interest in this rare disease.
The Delphi survey succeeded in recruiting a large panel of international voters; however, regional differences in opinion and practice were not analysed, and the majority of invited participants were from Europe. Hereditary transthyretin-mediated amyloidosis ATTRv is a rare, progressive and highly disabling disease that affects people with pathogenic transthyretin TTR gene variants. Through a partnership between patient advocates and healthcare professionals HCPs , this study aimed to inform measures to overcome the inequalities in healthcare provision, to enhance shared decision-making and to promote the development of personalised care.
However, unlike similar initiatives in other chronic diseases, 6β8 ATTRv management requires coordinated support from multiple specialties beyond the core multidisciplinary team MDT. Currently, care is coordinated by specialist MDTs including neurology, cardiology, internal medicine and nurse specialists , who may be located at regional or national centres.
