BMJ Open · 14 authors, 17 centres
This summary was generated by AI from a single paper. It has not been reviewed by a clinician and is not clinical advice. Verify against the source before acting on it.
This study used a Delphi survey with 122 international healthcare professionals and patient advocacy representatives to build consensus on holistic care recommendations for hereditary ATTR amyloidosis. The panel reached high agreement on almost all recommendations, but reported that implementing them in routine clinical practice is a significant challenge.
An international Delphi survey was conducted with a primary panel and 122 respondents from 27 countries, including healthcare professionals and patient advocacy group representatives, to develop consensus recommendations for holistic care in hereditary ATTR amyloidosis. The survey focused on seven core goals, such as early diagnosis and family-centered care, and used two voting rounds to assess agreement and feasibility. The results showed that based on a ≥75% agreement threshold, all but one recommendation were endorsed by the clinical-patient community. However, only 35% of recommendations were identified as a core part of routine care by most healthcare professionals, while patient advocacy groups reported even lower implementation levels. The study highlights the gap between consensus on ideal care and its practical application in specialist settings. Limitations include a potential European bias and a lack of country-level analysis, which may affect the generalizability of findings across different healthcare systems.
