ArticleESC heart failure2020
Gateway and journey of patients with cardiac amyloidosis.
Article in ESC heart failure, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed, 26 citations in OpenAlex.
- A simple nomogram to help guide the diagnosis of cardiac amyloidosis in patients with heart failure with preserved ejection fraction.Quantitative imaging in medicine and surgery · 2026Article
- The patient's voice: real-world experiences of a transthyretin amyloidosis focus group.BMC health services research · 2026Article
- Wild-type transthyretin cardiac amyloidosis: the journey to diagnosis in the Czech Republic : The research project of the Czech Society of Cardiology.Orphanet journal of rare diseases · 2026Article
- Living with Transthyretin amyloid cardiomyopathy from a patient perspective.BMC cardiovascular disorders · 2025Article
- Symptoms of Hereditary Transthyretin Amyloidosis: The Patient and Physician Perspective.Neurology and therapy · 2024Article
- The journey to diagnosis of wild-type transthyretin-mediated (ATTRwt) amyloidosis: a path with multisystem involvement.Orphanet journal of rare diseases · 2024Article
- Changes in the diagnostic trajectory of transthyretin cardiac amyloidosis over six years.Heart and vessels · 2024Observational
- Best Practices in Nuclear Imaging for the Diagnosis of Transthyretin Amyloid Cardiomyopathy (ATTR-CM) in KSA: The Eagle Eyes of Local Experts.Diagnostics (Basel, Switzerland) · 2024Review
- Extending the reach of expert amyloidosis care: A feasibility study exploring the staged implementation of a UK amyloidosis network.Clinical medicine (London, England) · 2024Article
- Dual versus single energy cardiac CT to measure extra cellular volume in cardiac amyloidosis: Correlations with cardiac MRI.International journal of cardiology. Heart & vasculature · 2023Article
- Diagnostic delay in rare diseases: data from the Spanish rare diseases patient registry.Orphanet journal of rare diseases · 2022Article
- Implementing a Machine-Learning-Adapted Algorithm to Identify Possible Transthyretin Amyloid Cardiomyopathy at an Academic Medical Center.Clinical Medicine Insights. Cardiology · 2022Article
- Echocardiographic Patterns of Left Ventricular Diastolic Function in Cardiac Amyloidosis: An Updated Evaluation.Journal of clinical medicine · 2021Article
- Current Challenges of Cardiac Amyloidosis Awareness among Romanian Cardiologists.Diagnostics (Basel, Switzerland) · 2021Article
- Gateway and journey of patients with cardiac amyloidosis.ESC heart failure · 2020Article
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Authors and funding
12 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimsAdvances have been made over the last decade in the management of cardiac amyloidosis (CA), but a delayed diagnosis is still common. The aim of this study was to describe the journey to CA diagnosis from initial clinical and to analyse time to diagnosis. METHODS AND
resultsBetween January 2001 and May 2019, 270 consecutive patients with CA diagnosed at Toulouse University Hospital were retrospectively included in this cross-sectional study: 111 (41%) light chain amyloidosis, 122 (45%) wild-type transthyretin amyloidosis, and 37 (14%) hereditary transthyretin amyloidosis. CA onset occurred mostly with dyspnoea (50%) or systematic follow-up (10%). The cardiologist was the first line specialist in 68% of patients, followed by the nephrologist (9%) and neurologist (8%). Patients encountered a median (minimum-maximum) number of two (1-7) physician specialists and performed a median (minimum-maximum) number of three (1-8) tests before diagnosis. Median delay between symptom onset and CA diagnosis was 8 [IQR 5-14], 10 [IQR 3-34], and 18 [IQR 4-49] months, respectively, in light chain amyloidosis, wild-type transthyretin amyloidosis, and hereditary transthyretin amyloidosis subgroups (P = .060). Having performed electromyography or spirometry was associated with a longer delay in diagnosis in the overall population: odds ratio = 1.13; 95% confidence interval 1.02 to 1.24; and odds ratio = 1.13; 1.03 to 1.24, respectively, probably due to non-specific initial symptoms.
conclusionsCA is a protean disease with various first line specialists causing a diagnostic wandering despite increasing medical community awareness. It requires a multidisciplinary specialist care networks to educate and manage symptoms and therapies.
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