Journal Article

Single German centre experience with patient journey and care-relevant needs in amyloidosis: The German AMY-NEEDS research and care program

Frantz, Stefan, Bratan, Tanja, Neuderth, Silke, Ihne-Schubert, Sandra Michaela, Leberzammer, Maria, Weidgans, Marcel, Schubert, Torben, Störk, Stefan, Einsele, Hermann, Knop, Stefan

2024

Overview

Amyloidosis is a rare multi-system disorder associated with frequently delayed diagnosis, enormous disease burden and psychosocial distress. Systematic assessment of needs was performed by a subtype-spanning questionnaire-based survey within the AMY-NEEDS research and care program. 118 patients with proven amyloidosis (62.7% ATTR, 22.0% AL, 15.3% other forms) were included in August 2020 until February 2021 (mean age 71.2 ±11.3 years; 30% women). The median diagnostic delay between onset of symptoms and diagnosis was 9.0 (range: 2.5; 33.0) months. Local health care providers (HCPs) play a central role on the way to diagnosis. Diagnosis itself typically requires a clinical but not necessarily a university setting. In the treatment phase, the focus moves to the amyloidosis centre as primary contact and coordinator, with general practitioners (GPs) acting predominantly as a contact point in crisis and link to additional services. About half of patients reported impaired quality of life and one third suffering from anxiety and depressed mood, respectively. The majority of patients talk about their concerns with close caregivers and local HCPs. Advance care planning is a relevant, yet insufficiently met need. The journey of patients with amyloidotic disease, their contact partners and needs at different stages were characterized in detail within the German health care system. An amyloidosis-specific care concept has to master the multitude of interfaces connecting the numerous treatment providers involved with the amyloidosis centre and GPs as key players. Telemedical approaches could be a promising and well-accepted option allowing optimal coordination and communication.

• Publisher: Public Library of Science,Public Library of Science (PLoS)
• Subject: Aged / Aged, 80 and over / Amyloidosis / Amyloidosis - psychology / Amyloidosis - therapy / Biology and Life Sciences / Caregivers - psychology / Delayed Diagnosis / Diagnosis / Disease management / Female / Germany - epidemiology / Health care / Health care policy / Health insurance / Health Sciences / Health services / Humans / Hälsovetenskap / Male / Medical and Health Sciences / Medical diagnosis / Medicin och hälsovetenskap / Medicine and Health Sciences / Middle Aged / Multidisciplinary teams / Nursing / Omvårdnad / Patient care planning / Patients / People and Places / Quality of Life / Rare diseases / Signs and symptoms / Social Sciences / Surveys and Questionnaires