Loss of appetite is related to undesirable loss of weight in amyotrophic lateral sclero-sis (ALS) and affects up to two thirds of people with this disease. Little is known about the instruments used to measure appetite loss, its impact on quality of life (QoL), or strategies used to improve loss of appetite. In this study we aim to charac-terize the existing literature on the symptom of appetite loss in ALS through a sys-tematic scoping review following the framework by Arksey and O'Malley and PRISMA guidelines. Studies assessing appetite in people with ALS (pALS) published in English and indexed on Web of Science, PubMed, and Scopus databases were included. A total of 156 full references were identified, of which 10 articles met the inclusion criteria and were eligible for data synthesis after screening. Seven unique instruments were used to assess appetite across the included studies, most com-monly the Council of Nutrition Appetite Questionnaire. No studies included a subjec-tive assessment of appetite loss. A total of 12 unique potential associated factors across five studies were identified. QoL was measured in seven studies using nine different QoL measurement tools. Few studies measure appetite in pALS and there is no consensus on the assessment tool used. Few studies evaluated the impact of appetite as a symptom on QoL. Furthermore, the heterogeneity of outcomes and risk factors of the existing data limit the clinical application of these findings. Future stud-ies are needed to guide clinical management and interventions for people with ALS and appetite loss.
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