Literature DB >> 11464851

Improving the quality of life for people with ALS: the challenge ahead.

H Mitsumoto1, M Del Bene.   

Abstract

In tandem with recent progress in basic and clinical research in amyotrophic lateral sclerosis (ALS), clinical care and management has improved substantially. Key processes and practices have been established and are specified in current ALS Practice Parameters; the international ALS databases identify the current status of care and management given by physicians. A number of prospective clinical management research studies are now well underway to establish the effective utility of enteral feeding, assistive ventilatory device, and exercise in patients with ALS. One of the main research objectives in the clinical management of ALS is to improve patients' quality of life. For patients with ALS, only comprehensive multidisciplinary care can effectively improve their overall quality of life from diagnosis to death. This paper will briefly review a number of factors that must be considered if we are to improve the quality of life for these patients, including comprehensive medical management, patient education, the importance of hope, the role of the health care professional, and the patients themselves.

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Mesh:

Year:  2000        PMID: 11464851     DOI: 10.1080/146608200300079464

Source DB:  PubMed          Journal:  Amyotroph Lateral Scler Other Motor Neuron Disord        ISSN: 1466-0822


  15 in total

Review 1.  The management of motor neurone disease.

Authors:  P N Leigh; S Abrahams; A Al-Chalabi; M-A Ampong; L H Goldstein; J Johnson; R Lyall; J Moxham; N Mustfa; A Rio; C Shaw; E Willey
Journal:  J Neurol Neurosurg Psychiatry       Date:  2003-12       Impact factor: 10.154

2.  A cross sectional study on determinants of quality of life in ALS.

Authors:  A Chiò; A Gauthier; A Montuschi; A Calvo; N Di Vito; P Ghiglione; R Mutani
Journal:  J Neurol Neurosurg Psychiatry       Date:  2004-11       Impact factor: 10.154

Review 3.  The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis.

Authors:  Ammarah Y Soofi; Vanina Dal Bello-Haas; Michelle E Kho; Lori Letts
Journal:  Qual Life Res       Date:  2017-12-04       Impact factor: 4.147

4.  Kinematic Features of Jaw and Lips Distinguish Symptomatic From Presymptomatic Stages of Bulbar Decline in Amyotrophic Lateral Sclerosis.

Authors:  Andrea Bandini; Jordan R Green; Jun Wang; Thomas F Campbell; Lorne Zinman; Yana Yunusova
Journal:  J Speech Lang Hear Res       Date:  2018-05-17       Impact factor: 2.297

Review 5.  The neuropathological signature of bulbar-onset ALS: A systematic review.

Authors:  S Shellikeri; V Karthikeyan; R Martino; S E Black; L Zinman; J Keith; Y Yunusova
Journal:  Neurosci Biobehav Rev       Date:  2017-02-02       Impact factor: 8.989

6.  Speech Movement Measures as Markers of Bulbar Disease in Amyotrophic Lateral Sclerosis.

Authors:  Sanjana Shellikeri; Jordan R Green; Madhura Kulkarni; Panying Rong; Rosemary Martino; Lorne Zinman; Yana Yunusova
Journal:  J Speech Lang Hear Res       Date:  2016-10-01       Impact factor: 2.297

7.  Tollgate-based progression pathways of ALS patients.

Authors:  Özden O Dalgıç; F Safa Erenay; Kalyan S Pasupathy; Osman Y Özaltın; Brian A Crum; Mustafa Y Sir
Journal:  J Neurol       Date:  2019-01-25       Impact factor: 4.849

8.  Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care.

Authors:  Anne Hogden; David Greenfield; Peter Nugus; Matthew C Kiernan
Journal:  Health Expect       Date:  2013-12-23       Impact factor: 3.377

9.  Usage of support services in primary lateral sclerosis.

Authors:  Tracy L Peters; Mary Kay Floeter
Journal:  Amyotroph Lateral Scler       Date:  2009-06

10.  Psychometric Properties of Rapid Word-Based Rate Measures in the Assessment of Bulbar Amyotrophic Lateral Sclerosis: Comparisons With Syllable-Based Rate Tasks.

Authors:  Sanjana Shellikeri; Reeman Marzouqah; Benjamin Rix Brooks; Lorne Zinman; Jordan R Green; Yana Yunusova
Journal:  J Speech Lang Hear Res       Date:  2021-10-26       Impact factor: 2.674

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