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Universidade de Brasília
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dc.contributor.authorMehta, Ambereen K.-
dc.contributor.authorMello, Max Sarmet Moreira Smiderle-
dc.contributor.authorMaiser, Samuel-
dc.contributor.authorMeyer, Jenny A.-
dc.contributor.authorKolodziejczak, Sherry-
dc.contributor.authorWashington, Karla-
dc.contributor.authorSimmons, Zachary-
dc.date.accessioned2023-11-24T10:56:22Z-
dc.date.available2023-11-24T10:56:22Z-
dc.date.issued2023-10-12-
dc.identifier.citationMEHTA, 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.pt_BR
dc.identifier.urihttp://repositorio2.unb.br/jspui/handle/10482/46905-
dc.language.isoengpt_BR
dc.publisherWileypt_BR
dc.rightsAcesso Restritopt_BR
dc.titleQuality-of-life assessment instruments used across ALS clinicspt_BR
dc.typeArtigopt_BR
dc.subject.keywordEsclerose lateral amiotróficapt_BR
dc.subject.keywordCuidados médicos ambulatoriaispt_BR
dc.subject.keywordQualidade de vidapt_BR
dc.identifier.doihttps://doi.org/10.1002/mus.27985pt_BR
dc.relation.publisherversionhttps://onlinelibrary.wiley.com/doi/10.1002/mus.27985pt_BR
dc.description.abstract1Introduction/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.pt_BR
dc.identifier.orcidhttps://orcid.org/0000-0001-7834-2279pt_BR
dc.identifier.orcidhttps://orcid.org/0000-0001-8574-5332pt_BR
dc.contributor.affiliationJohns Hopkins School of Medicine, Department of Medicine, Baltimore, Maryland, USApt_BR
dc.contributor.affiliationUniversity of Brasília, Graduate Department of Health Science and Technologypt_BR
dc.contributor.affiliationHennepin Healthcare, Department of Neurology, Minneapolis, Minnesota, USApt_BR
dc.contributor.affiliationSUNY Upstate Medical University, Syracuse, Department of Neurology, New York, USApt_BR
dc.contributor.affiliationALS Care Clinic/Cardiac Pulmonary Rehab/ Therapy Services/Worker's Program, Crestwood Medical Center, Huntsville, Alabama, USApt_BR
dc.contributor.affiliationWashington University in St. Louis, School of Medicine, Department of Medicine, St. Louis, Missouri, USApt_BR
dc.contributor.affiliationPenn State Health Milton S. Hershey Medical Center, Department of Neurology, Hershey, Pennsylvania, USApt_BR
dc.description.unidadeFaculdade UnB Ceilândia (FCE)pt_BR
dc.description.ppgPrograma de Pós-Graduação em Ciências e Tecnologias em Saúdept_BR
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