Individual Quality of Life is not Correlated with Health-Related Quality of Life or Physical Function in Patients with Amyotrophic Lateral Sclerosis

2004 ◽  
Vol 7 (4) ◽  
pp. 551-557 ◽  
Author(s):  
Christian Neudert ◽  
Maria Wasner ◽  
Gian Domenico Borasio
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Physical Function ◽  
Individual Quality ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Individual Quality Of Life ◽  
Lateral Sclerosis

scholarly journals Quality of life among relatives of patients with amyotrophic lateral sclerosis: A prospective and longitudinal study

2021 ◽  
pp. 1-9
Author(s):  
Birgitta Jakobsson Larsson ◽  
Anneli Ozanne ◽  
Karin Nordin ◽  
Ingela Nygren
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Physical Function ◽  
Well Being ◽  
Individual Quality ◽  
Time Points ◽  
Disease Trajectory ◽  
Individual Quality Of Life ◽  
Lateral Sclerosis

Abstract Objective Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression. Method A total of 31 relatives were included. Data collection was performed at five time points: 1–3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life — Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R). Results The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives’ iQoL correlated with emotional well-being and the patient's physical function at different time points. Significant of result Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives’ iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives’ own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.

Predictors of health-related quality of life in people with amyotrophic lateral sclerosis

2016 ◽  
Vol 370 ◽  
pp. 269-273 ◽  
Author(s):  
Petter Sandstedt ◽  
Sverker Johansson ◽  
Charlotte Ytterberg ◽  
Caroline Ingre ◽  
Lotta Widén Holmqvist ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Lateral Sclerosis

Measurement of Health-Related Quality of Life in Patients With Amyotrophic Lateral Sclerosis in Clinical Trials of New Therapies

Medical Care ◽  
1999 ◽  
Vol 37 (1) ◽  
pp. 15-26 ◽  
Author(s):  
Anne M. Damiano ◽  
Donald L. Patrick ◽  
Gladys I. Guzman ◽  
Marek J. Gawel ◽  
Deborah F. Gelinas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Related Quality ◽  
New Therapies ◽  
Related Quality ◽  
Health Related ◽  
Lateral Sclerosis
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