Morbidity and mortality measured through ?Days Alive and Out of Hospital?(DAOH) in patients with amyloidosis. Author(s) : Posadas Martínez, María Lourdes; Epstein, Teo; Vaena, Mariana; Osorno, María Sol; Brulc, Erika Bárbara; Carretero, Marcelina;

MARIA LOURDES POSADAS MARTINEZ

Simposio; XVIIIth International Symposium on Amyloidosis; 2022

Contribution ID : 116Track / Type : ISA 2022 Abstract SubmissionFormat : Undecided (Oral or Poster Presentation)Title : Morbidity and mortality measured through ?Days Alive and Out of Hospital?(DAOH) in patients with amyloidosis.Author(s) : Posadas Martínez, María Lourdes; Epstein, Teo; Vaena, Mariana; Osorno, María Sol; Brulc, Erika Bárbara; Carretero, Marcelina; Sáez, María Soledad; Sorroche, Patricia Beatriz; Pollán, Javier; Aguirre, María Adela; Nucifora, Elsa MercedesBackground: Several studies evaluate overall survival in different types of amyloidosis, but the impact on morbidity is less well known. Days alive and out of hospital (DAOH) is a novel patient-centered outcome that assesses the burden of disease, through the measurement of morbidity and mortality.Objectives: To describe DAOH in patients with AL, ATTR and AA amyloidosis in an Institutional Registry of Amyloidosis.Material and Methods: Prospective cohort of consecutive patients diagnosed as AL or ATTR or AA, from the Institutional Registry of Amyloidosis (RIA) belonging to the Health Maintenance Organizations of the Italian Hospital of Buenos Aires between 01/01/2010 and 31/08/2021. Patients with follow-up in another institution or less than 365 days were excluded. Quantitative variables were described with their median and interquartile range, and categorical variables with absolute and relative frequencies. We calculated DAOH at 1, 3, and 5 years, subtracting days hospitalized and days dead from the potential follow-up time. Only patients with a follow-up equal to or greater than the potential follow-up time were included in each group. We use Kruskal Wallis to compare DAOH between types of amyloidosis. Results and Discussion: 177 patients were eligible, of whom 60 were excluded and 117 included for analysis. Of these, the total completed the follow-up for DAOH at one year, 71 for DAOH at 3 years and 51 for DAOH at 5 years (Figure 1). Of the 117 patients included, 36% were women, the median age was 73 years, and the Charlson score was 4 (IR 3-6). The most frequently affected organ was the heart (66%), followed by the kidney (37%). The 77% had at least one episode of hospitalization during the total follow-up time. The median number of hospitalizations was 2 (IR 1-3). The median of DAOH was 360 (IR 323-365), 1055 (IR 712-1094) and 1712 days (IR 712-1798) at 1, 3 and 5 years, respectively. The median of DAOH at 1 year was 346 (275-365), 365 (IR 353-365), and 355 days (207-365) for AL, ATTR, and AA, respectively (p 0.01). The median of DAOH at 5 years was 1739 (IR 352-1793), 882 (IR 804-1762) and 1791 days (IR 1627-1824) for AL, ATTR and AA, respectively (p 0.36).In the present study we found that DAOH varies between types of amyloidosis. The AL type presented lower DAOH at 1 year, compared to ATTR and AA. This may be due to the fact that at the time of diagnosis, patients with AL are more seriously ill, requiring early hospitalizations, either in order to establish support or specific treatments such as heart transplantation, autologous stem cells, and oncospecific therapy.The small sample size in DAOH at 5 years could explain the lack of power to detect differences between the types of amyloidosis. However, ATTR shows a median of around 900 days shorter compared to AL and AA. This may be because, unlike the faster-progressing of AL, ATTR is a slower-progressing disease, which occurs mainly in the elderly and frail population, which increases mortality and the number of hospitalizations for all causes over time.Regarding type AA, it seems to be the group with the lowest morbidity and mortality. This could be due to the fact that it is a chronic disease, with mainly renal involvement, which does not put the patient's life at risk in the short term. Summary & Conclusion: DAOH is a patient-centered outcome measure that describes the patient's disease journey. This is the first work that describes DAOH in the 3 types of systemic amyloidosis. This result can become a relevant measure for monitoring chronic diseases.Keywords: Inmunoglobulin light chains; transthyretin amyloidosis; amyloidosis AA; patient-centered outcome; prognosis; morbidity; mortality