SCIENCE@home

Theme 12 Clinical Management and Support

J. Bedford,E. Mioshi,Keelie Denson,Ericka P Greene,K. Bokuda,Kentaro Kawama,Hideki Kimura,K. Hayashi,T. Kawazoe,Keigo Totani,Yoshiyuki Matsuki,Noritaka Wakasugi,Keisuke Ishizawa,Juri Sawada,Yumi Itagaki,M. Haraguchi,C. Matsuda,Yuki Nakayama,Miyuki Yabuki,Kazushi Takahashi,Toshio Shimizu,Andr e Maier,Max Monti,Peggy Schumann,Yasmin Koc,D. Kettemann,J. Norden,B. Walter,Philipp Schmitt,T. Grehl,U. Weyen,Susanne Petri,Annekathrin R € odiger,R. Steinbach,J. Grosskreutz,S. Bernsen,P. Weydt,Joachim Wolf,Maximilian Vidovic,P. Baum,Moritz Metelmann,J. Weishaupt,S. Spittel,K. €. ortvelyessy,Christoph M € unch,T. Meyer,Bettina M. G € oricke,P. Lingor,I. Cordts,M. Boentert,Zacharias Kohl,Y. Koc,S. Subramanian,K. €. O. elyessy,Alessio Riitano,Marina Hempler,Felix Kolzarek

Published 2025 in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

ABSTRACT

Background: The rate and variation of symptom deterioration in ALS is somewhat unpredictable (1), care is complex involving a wide range of health and social care professionals (HSCPs). (2) These elements present significant challenges for people living with ALS when making decisions. (3). Moreover, patient wishes and readiness to make clinical decisions may not align with the expectations of professionals regarding disease management and progression. (2) Therefore, the identification of effective interventions to support decision making is important to inform future research and practice. Objective: To understand the current landscape of available interventions to support people with ALS engage with clinical treatment decisions. Methods: This study employed a scoping review to make a comprehensive assessment of the type, extent and scale of existing literature. Searches were carried out using the electronic databases SCOPUS and EBSCO (MEDLINE, PsychINFO, CINAHL). All sources up to 27/06/2024 were included. Results: Searches identified 424 papers, of which 20 met eligibility criteria. Most studies were conducted in the USA, UK and Australia and used qualitative methodologies (65%). Study participants included plwALS (n ¼ 768; 59.77% male), carers (n ¼ 158; 65.6% female), or health and social care professionals (HSCP, n ¼ 51). Five studies reported participants ’ ethnicity, from which 91.1% were White. Only 5 studies reported an intervention to support people with ALS engage with clinical treatment decisions. Three elements were noticeable across the five interventions: i) the quality and content of discussion between the HSCP and the person with ALS, ii) timing, and iii) appropriate use and clear transmission of information. Discussion: The results suggest there is a small number of interventions designed specifically to enable patient engagement with clinical

PUBLICATION RECORD

CITATION MAP

EXTRACTION MAP

CLAIMS

  • No claims are published for this paper.

CONCEPTS

  • No concepts are published for this paper.

REFERENCES

Showing 1-23 of 23 references · Page 1 of 1

CITED BY

  • No citing papers are available for this paper.

Showing 0-0 of 0 citing papers · Page 1 of 1