title: A mapping review of international guidance on the management and care of amyotrophic lateral sclerosis (ALS).
abstract: Management of ALS is suboptimal. Consequently, quality improvement interventions are needed to improve ALS care. An evidence-based insight into how patients should be managed is essential when developing quality improvement interventions. Therefore, this study aimed to map, categorize and summarize international guidance on the management and care of ALS and to identify gaps in this guidance by means of a mapping review. Literature was searched for clinical practice guidelines, quality indicators and evidence-based clinical summaries. A content analysis and meta-synthesis of the included literature was performed. Interventions and outcomes used in the management and care of ALS were identified and categorized. Furthermore, the amount of guidance underpinning these interventions and outcomes was analysed. Six clinical practice guidelines, one set of quality indicators and three evidence-based clinical summaries were identified. The results demonstrated that certain domains in ALS care, mainly disease-specific domains such as breathing and swallowing, are extensively addressed in the literature whereas other subjects, such as care coordination, receive little attention. In conclusion, this mapping review provides a scientific basis for targeting and developing the clinical content of a quality improvement intervention for the management of ALS.
authors.affiliation: a KU Leuven Institute for Healthcare Policy, Department of Public Health and Primary Care , University of Leuven - KU Leuven , Leuven, Belgium ;
authors.forename: Astrid I W A
authors.initials: AI
authors.lastname: Janssens
authors.affiliation: b KU Leuven Institute for Healthcare Policy, Department of Public Health and Primary Care, University of Leuven- KU Leuven, Leuven, Belgium ;
authors.forename: Marijke
authors.initials: M
authors.lastname: Ruytings
authors.affiliation: c Maurice Wohl Clinical Neuroscience Institute , King's College London , London , UK ;
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
authors.affiliation: d Rita Levi Montalcini Department of Neuroscience , University of Turin, Turin, Italy, and Azienda Ospedaliero Universitaria Città della Salute e della Scienza , Turin , Italy ;
authors.forename: Adriano
authors.initials: A
authors.lastname: Chio
authors.affiliation: e Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin , Dublin , Ireland ;
authors.forename: Orla
authors.initials: O
authors.lastname: Hardiman
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , Sheffield , UK ;
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: Mcdermott
authors.affiliation: g Outpatient Department for ALS and other Motor Neuron Diseases , Charité - Universitätsmedizin Berlin , Berlin , Germany ;
authors.forename: Thomas
authors.initials: T
authors.lastname: Meyer
authors.affiliation: h Department of Neuroscience and Rehabilitation , Fondazione Salvatore Maugeri IRCCS , Milan , Italy ;
authors.forename: Gabriele
authors.initials: G
authors.lastname: Mora
authors.affiliation: i Department of Neurosciences, VIB-Vesalius Research Center, Experimental Neurology-Laboratory of Neurobiology , University of Leuven - KU Leuven , Leuven , Belgium and Department of Neurology , University Hospitals Leuven , Leuven , Belgium ;
authors.forename: Philip
authors.initials: P
authors.lastname: Van Damme
authors.affiliation: j Brain Center Rudolf Magnus, Department of Neurology , University Medical Center Utrecht , Utrecht , The Netherlands ;
authors.forename: Leonard H
authors.initials: LH
authors.lastname: Van Den Berg
authors.affiliation: k KU Leuven Institute for Healthcare Policy , Department of Public Health and Primary Care , University of Leuven - KU Leuven , Leuven, Belgium and Department of Quality Management , University Hospitals Leuven , Leuven , Belgium ;
authors.forename: Kris
authors.initials: K
authors.lastname: Vanhaecht
authors.affiliation: l Department of Neurology, Klinikum rechts der Isar , Technische Universität München , Munich , Germany ;
authors.forename: Andrea S
authors.initials: AS
authors.lastname: Winkler
authors.affiliation: m Walter Sermeus, KU Leuven Institute for Healthcare Policy, Department of Public Health and Primary Care , University of Leuven - KU Leuven , Leuven , Belgium.
authors.forename: Walter
authors.initials: W
authors.lastname: Sermeus
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D016208:Databases, Factual / Q000706:statistics & numerical data; D019468:Disease Management; D006801:Humans; D007391:International Cooperation; D017410:Practice Guidelines as Topic
keywords: Amyotrophic lateral sclerosis; disease management; guidelines; quality improvement; review