Título :	Quality-of-life assessment instruments used across ALS clinics
Autor :	Mehta, Ambereen K. Mello, Max Sarmet Moreira Smiderle Maiser, Samuel Meyer, Jenny A. Kolodziejczak, Sherry Washington, Karla Simmons, Zachary
metadata.dc.identifier.orcid:	https://orcid.org/0000-0001-7834-2279 https://orcid.org/0000-0001-8574-5332
metadata.dc.contributor.affiliation:	Johns Hopkins School of Medicine, Department of Medicine, Baltimore, Maryland, USA University of Brasília, Graduate Department of Health Science and Technology Hennepin Healthcare, Department of Neurology, Minneapolis, Minnesota, USA SUNY Upstate Medical University, Syracuse, Department of Neurology, New York, USA ALS Care Clinic/Cardiac Pulmonary Rehab/ Therapy Services/Worker's Program, Crestwood Medical Center, Huntsville, Alabama, USA Washington University in St. Louis, School of Medicine, Department of Medicine, St. Louis, Missouri, USA Penn State Health Milton S. Hershey Medical Center, Department of Neurology, Hershey, Pennsylvania, USA
Assunto::	Esclerose lateral amiotrófica Cuidados médicos ambulatoriais Qualidade de vida
Fecha de publicación :	12-oct-2023
Editorial :	Wiley
Citación :	MEHTA, Ambereen K. et al. Quality-of-life assessment instruments used across ALS clinics. Muscle & Nerve, [S. l.], v. 68, n. 6, 865‐872, 2023. DOI: https://doi.org/10.1002/mus.27985.
Abstract:	Introduction/Aims: Instruments have been developed to assess quality of life (QoL) among people with amyotrophic lateral sclerosis (ALS). It is unclear whether these are utilized regularly in the clinical setting to guide individual patient care. In this study we aimed to understand the current use of instruments and existing barriers to assessing QoL in clinical ALS care. Methods: An anonymous survey developed by Northeast ALS (NEALS) Consortium Palliative Committee members was distributed to all multidisciplinary NEALS mem bers. Data were summarized via calculation of descriptive statistics. ALS Center characteristics were compared using chi-square and Fisher exact tests for categorical variables. Results: Seventy-three (6.4%) of the 1132 NEALS members responded to the survey, representing 148 clinics, 49.3% of whom reported assessing QoL during clinic visits. The most used ALS-specific instruments were the ALS Assessment Questionnaire (19.4%) and Amyotrophic Lateral Sclerosis Specific Quality of Life scale (16.6%). Barriers reported were uncertainty regarding which instrument to use and length of visits. QoL assessment was not significantly correlated with length of clinic visit but with access to specialty palliative care. Discussion: QoL assessments are performed by some, but not all, ALS centers during clinical visits. Although this study did have a low number of responding centers, the percentage, the proportion is similar to that seen in earlier studies, which limits the findings' generalizability. The value of QoL assessments' impact on outcomes should be further investigated and, if warranted, creative ways sought to increase the frequency of their use, including patient self-assessments before clinic and/or the use of teleheath to reduce the length of clinic visits.
metadata.dc.description.unidade:	Faculdade UnB Ceilândia (FCE)
metadata.dc.description.ppg:	Programa de Pós-Graduação em Ciências e Tecnologias em Saúde
DOI:	https://doi.org/10.1002/mus.27985
metadata.dc.relation.publisherversion:	https://onlinelibrary.wiley.com/doi/10.1002/mus.27985
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