A prospective study of quality of life in amyotrophic lateral sclerosis patients

Acta Neurologica Scandinavica
Birgitta Jakobsson LarssonIngela Nygren

Abstract

The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time. Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS). Data were collected from diagnosis and thereafter, every six months for a period of two years. Twelve patients completed the 24-month follow-up. Family, friends and own physical health were important for overall quality of life, from diagnosis and during the disease progression. Most patients had good quality of life, which remained stable, despite changed physical functions. Several patients scored above the cut-off score for doubtful and clinical anxiety and depression early on after diagnosis, and there was a significant decrease in anxiety over time. Soon after diagnosis, there was a correlation between depress...Continue Reading

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Citations

Feb 4, 2019·Acta Neurologica Scandinavica·Fabiola De MarchiLetizia Mazzini
Nov 18, 2017·Acta Neurologica Scandinavica·E BroussalisJ Kraus
Apr 4, 2019·Frontiers in Neurology·Rangariroyashe Hannah ChipikaPeter Bede
Jul 9, 2020·Journal of Neurology·Cynthia R Vázquez MedranoDorothée Lulé
Oct 5, 2018·Journal of Neuromuscular Diseases·Petter SandstedtMarie Kierkegaard
Nov 24, 2020·Health and Quality of Life Outcomes·Miriam GalvinOrla Hardiman
Nov 24, 2020·Disability and Rehabilitation·Hikari AndoCarolyn A Young
Jan 15, 2021·Neurological Sciences : Official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology·Corrado CabonaClaudia Caponnetto
Jun 23, 2021·Palliative & Supportive Care·Birgitta Jakobsson LarssonIngela Nygren
Sep 30, 2020·Rehabilitation Nursing : the Official Journal of the Association of Rehabilitation Nurses·Juyeon Oh, Jung A Kim
Sep 30, 2021·The American Journal of Hospice & Palliative Care·Anish SethiSam Maiser

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