Integrated specialty care for amyloidosis: a scoping review using the Consolidated Framework for Implementation Research.

Abstract

Background: Amyloidosis is a complex and rare disease requiring specialized, multidisciplinary care to effectively manage its diverse manifestations. Existing evidence underscores the benefits of such care, linked to improved patient outcomes and clinician satisfaction. With the rising incidence of amyloidosis diagnoses and rapid advancements in treatment, the need for coordinated, expert-led care is increasing. However, implementing these centers is challenging due to resource allocation and inter-specialty collaboration. While resource allocation is a known hurdle, there has not been a comprehensive review of all the barriers and facilitators to establishing these clinics. This scoping review aims to identify the barriers and facilitators related to the implementation of coordinated, multidisciplinary specialty care clinics in amyloidosis management.

Methods: An electronic search was conducted in Medline, Embase, and CINAHL for studies published in English from 2013 to 2023, supplemented by a grey literature search. The inclusion criteria focused on studies discussing multidisciplinary clinical environments for amyloidosis care, particularly light-chain (AL) and transthyretin amyloidosis (TTR). Exclusion criteria included books, opinion pieces, dissertations, and conference abstracts. Data were analyzed and synthesized using a narrative synthesis approach, guided by the Consolidated Framework for Implementation Research (CFIR), and reported according to PRISMA-ScR guidelines.

Results: The search resulted in 1547 findings. After screening with Covidence, 7 papers were included in the final review. Independent reviewers screened and extracted the papers. Key facilitators identified include access to experts, adequate staffing, secure funding, partnerships with patient advocacy groups, and robust processes for multidisciplinary communication. Barriers primarily relate to the complexity of care, a lack of standardized protocols, difficulties in communication and coordination between providers, and challenges in training and maintaining knowledgeable care providers. The review also revealed significant gaps in existing research.

Conclusions: This review enhances understanding of the barriers and facilitators in establishing amyloidosis specialty clinics. Addressing these barriers and leveraging facilitators are crucial for shaping the future of amyloidosis care. These insights support a model for implementing integrated care for this growing patient population and highlight the need for further research to support policy development and effective implementation of these specialized clinics.