Changes in the diagnostic trajectory of transthyretin cardiac amyloidosis over six years.

Awareness of transthyretin amyloid cardiomyopathy (ATTR-CM) has increased over the years due to diagnostic and therapeutic developments. Timely initiation of novel disease-modifying treatments improves both morbidity and mortality, which underlines the necessity for a prompt diagnosis. Nevertheless, early diagnosis of ATTR-CM remains challenging. This is a retrospective observational cohort study of patients diagnosed with ATTR-CM. Between 2016 and 2023, 87 patients were diagnosed with cardiac amyloidosis of which 65 (75%) patients with ATTR-CM and 22 (25%) patients with light chain amyloidosis. This study included 65 ATTR-CM patients (mean age 77 ± 7 years; 86% male) of whom 59 (91%) with wild-type ATTR-CM (ATTRwt) and six (9%) with variant ATTR-CM. We observed a surge in ATTR-CM diagnoses from 3 patients/year (2016-2020) to 16 patients/year (2021-2023), driven by ATTRwt. Nevertheless, the interval between the onset of heart failure symptoms and ATTR-CM diagnosis has not changed significantly (2016-2020 27.3 months [18.6-62.4]; 2021-2023 30.0 months [8.6-57.2]; p = 0.546), driven by time to referral. Red flags for ATTR-CM preceded diagnosis by several years: left ventricular hypertrophy (79%, 5.8 years [3.3-7.0]) and carpal tunnel syndrome (49%, 6.8 years [2.3-12.1]). Despite the presence of typical red flags, symptom-to-diagnosis duration has remained similar driven by time to referral. Improved recognition of red flags for ATTR-CM could reduce the time to diagnosis and improve overall recognition.

Challenges in heart failure care in four European countries: a comparative study.

BACKGROUND: In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. METHODS: A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. RESULTS: The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. CONCLUSION: Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills.

Integrating avatar technology into a telemedicine application in heart failure patients : A pilot study.

BACKGROUND: Heart failure is a severe condition and telemedicine can improve the care of heart failure. Many patients are unable to use telemedicine applications due to visual impairment and limited health-related literacy. Avatar technology might help to overcome these limitations. METHODS: A telemedicine application was combined with a nurse avatar and offered to heart failure outpatients for 3 months. System usability and patient satisfaction were evaluated monthly by the system usability score (maximum score=100) and the patient satisfaction scale (maximum score=50). RESULTS: In total, 37 heart failure patients were enrolled. The mean system usability score after 1 month was 73 (standard deviation=24) and 72 (standard deviation=10) after 3 months of follow-up, which was not significantly different (p = 0.40). The mean patient satisfaction scale after 1 month was 42 (standard deviation=5) and 39 (standard deviation=8) after 3 months, which was not significantly different (p = 0.10). CONCLUSION: A nurse look-a-like avatar integrated into a telemedicine application was positively assessed by heart failure patients. Future studies are warranted to clarify the role of avatar technology in telemedicine.

Prognostic value of signs and symptoms in heart failure patients using remote telemonitoring.

INTRODUCTION: Heart failure is a serious burden on health care systems due to frequent hospital admissions. Early recognition of outpatients at risk for clinical deterioration could prevent hospitalization. Still, the role of signs and symptoms in monitoring heart failure patients is not clear. The heart failure coach is a web-based telemonitoring application consisting of a 9-item questionnaire assessment of heart failure signs and symptoms and developed to identify outpatients at risk for clinical deterioration. If deterioration was suspected, patients were contacted by a heart failure nurse for further evaluation. METHODS: Heart failure coach questionnaires completed between 2015 and 2018 were collected from 287 patients, completing 18,176 questionnaires. Adverse events were defined as all-cause mortality, heart failure- or cardiac-related hospital admission or emergency cardiac care visits within 30 days after completion of each questionnaire. Multilevel logistic regression analyses were performed to assess the association between the heart failure coach questionnaire items and the odds of an adverse event. RESULTS: No association between dyspnea and adverse events was observed (odds ratio 1.02, 95% confidence interval 0.79-1.30). Peripheral edema (odds ratio 2.21, 95% confidence interval 1.58-3.11), persistent chest pain (odds 2.06, 95% confidence interval 1.19-3.58), anxiety about heart failure (odds ratio 2.12, 95% confidence interval 1.44-3.13), and extensive struggle to perform daily activities (odds ratio 2.23, 95% confidence interval 1.38-3.62) were significantly associated with adverse outcome. DISCUSSION: Regular assessment of more than the classical signs and symptoms may be helpful to identify heart failure patients at risk for clinical deterioration and should be an integrated part of heart failure telemonitoring programs.

Telemonitoring in patients with heart failure: Is there a long-term effect?

INTRODUCTION: Evidence suggests that telemonitoring decreases mortality and heart failure (HF)-related hospital admission in patients with HF. However, most studies follow their patients for only several months. Little is known about the long-term effects of telemonitoring after a period of application. METHODS: In 2007, the TEHAF study was initiated to compare tailored telemonitoring with usual care with respect to time until first HF-related hospital admission. In total, 301 patients completed the study after a follow-up period of one year. No differences could be found in time to first HF-related admission between intervention and control groups. Here, we performed a retrospective analysis in order to investigate potential long-term effects of telemonitoring. The primary endpoint was time to first HF-related hospital admission. Secondary endpoints were, amongst others, all-cause mortality, hospital admission due to HF and days alive and out of hospital (DAOOH). Electronic files of all included patients were reviewed between October 2007 and September 2015. RESULT: Mean follow-up duration was 1652 days (standard deviation: 1055 days). No significant difference in time to first HF-related hospital admission (log-rank test, p = 0.15), all-cause mortality (log-rank test, p = 0.43), or DAOOH (two-sample t-test, p = 0.87) could be found. However, patients that underwent telemonitoring had significantly fewer HF-related hospital admissions (incident rate ratio 0.54, 95% confidence interval 0.31-0.88). DISCUSSION: Telemonitoring did not significantly influence the long-term outcome in our study. Therefore, extending the follow-up period of telemonitoring studies in HF patients is probably not beneficial.