{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T18:03:01Z","timestamp":1792605781274,"version":"4.5.0"},"reference-count":53,"publisher":"BMJ","issue":"9","license":[{"start":{"date-parts":[[2023,9,5]],"date-time":"2023-09-05T00:00:00Z","timestamp":1693872000000},"content-version":"unspecified","delay-in-days":4,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100006400","name":"Alnylam Pharmaceuticals","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/100006400","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2023,7,28]]},"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Hereditary transthyretin-mediated amyloidosis is a rare, progressive and potentially life-limiting multisystem disease, affecting every aspect of a patient\u2019s life.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>This online international Delphi survey aimed to evolve clinical\u2212patient-led practical guidance, to inspire and encourage a holistic approach to care that is managed in specialist settings by multidisciplinary teams and supported by allied healthcare professionals (HCPs) and patient advocacy groups (PAGs).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Design<\/jats:title>\n                  <jats:p>A 14-member joint patient advocate\u2212HCP primary panel was convened including representation from PAGs and key clinical specialties (neurology, cardiology, internal medicine, physiotherapy, clinical psychology, dietetics and specialist nursing). Guidance evolved on the care provision needed to support seven core goals: early diagnosis and treatment; disease monitoring and organisation of care; maintenance of physical and mental health; family-centred care and caregiver support; patient\u2212doctor dialogue; access to social support and social networking.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Participants<\/jats:title>\n                  <jats:p>From June to October 2022, 252 HCPs and 51 PAG representatives from 27 countries were invited to participate in a Delphi survey. Of the 122 respondents who answered at least one survey question, most were HCPs (100, 82%) from specialist centres; the remainder were PAG representatives (22, 18%).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Main outcome measure<\/jats:title>\n                  <jats:p>Both level of agreement and feasibility in practice of each recommendation was tested by two anonymised online Delphi voting rounds.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Based on an a priori threshold for consensus of \u226575% agreement, the clinical\u2013patient community endorsed all but one recommendation. However, only 17\/49 (35%) recommendations were identified by most HCPs as a core part of routine care; the remainder (32\/49 (65%)) were identified as part of core care by &lt;50% of HCPs respondents, or as largely achievable by 30%\u201345% of HCPs. By comparison, PAGs recorded lower implementation levels.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/bmjopen-2023-073130","type":"journal-article","created":{"date-parts":[[2023,9,5]],"date-time":"2023-09-05T20:15:26Z","timestamp":1693944926000},"page":"e073130","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":11,"title":["Consensus recommendations on holistic care in hereditary ATTR amyloidosis: an international Delphi survey of patient advocates and multidisciplinary healthcare professionals"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7468-700X","authenticated-orcid":false,"given":"Laura","family":"Obici","sequence":"first","affiliation":[{"name":"Amyloidosis Research and Treatment Center, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosaline","family":"Callaghan","sequence":"additional","affiliation":[{"name":"Amyloidosis Ireland, Derry, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanne","family":"Ablett","sequence":"additional","affiliation":[{"name":"Flow Clinical Psychology, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catilena","family":"Bibiloni","sequence":"additional","affiliation":[{"name":"Asociaci\u00f3n Balear de la Enfermedad de Andrade, Palma de Mallorca, Spain"},{"name":"Amylo\u00efdosis Alliance, Marseille, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9222-1705","authenticated-orcid":false,"given":"Teofila","family":"Bueser","sequence":"additional","affiliation":[{"name":"Southeast Genomic Medicine Service Alliance, Guy\u2019s & St Thomas\u2019 Hospital NHS Foundation Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Isabel","family":"Concei\u00e7\u00e3o","sequence":"additional","affiliation":[{"name":"Department of Neurosciences and Mental Health, Centro Hospitalar Universit\u00e1rio Lisboa Norte-HSM; Lisbon University \u2013 FML, Lisbon, Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Dongiglio","sequence":"additional","affiliation":[{"name":"Inherited and Rare Cardiovascular Disease Unit, University of Campania \"Luigi Vanvitelli\", Naples, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agn\u00e8s","family":"Farrugia","sequence":"additional","affiliation":[{"name":"Amylo\u00efdosis Alliance, Marseille, France"},{"name":"Association Fran\u00e7aise Contre l\u2019Amylose, Marseille, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fabian","family":"Knebel","sequence":"additional","affiliation":[{"name":"Clinic for Internal Medicine II: Cardiology, Sana Klinikum Lichtenberg, Berlin, Germany"},{"name":"Amyloidosis Center Charit\u00e9 Berlin, Berlin, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thirusha","family":"Lane","sequence":"additional","affiliation":[{"name":"Patient Advocacy and Engagement, Alnylam Pharmaceuticals, Maidenhead, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lars-Ove","family":"Larsson","sequence":"additional","affiliation":[{"name":"FAMY-Norrbotten, Pite\u00e5, 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