Comparison of instruments addressing quality of life in patients with ALS and their caregivers
- 22 January 2002
- journal article
- research article
- Published by Wolters Kluwer Health in Neurology
- Vol. 58 (2) , 320-322
- https://doi.org/10.1212/wnl.58.2.320
Abstract
Most quality of life (QoL) instruments for ALS focus on function. An open instrument, the Schedule for the Evaluation of Individual Quality of Life–Direct Weight (SEIQoL-DW) that asks subjects to nominate and rate QoL areas important at the time of evaluation, was given to patients and caregiver spouses. Patients also completed function-based instruments. Correlations were poor between SEIQoL-DW and function-based instruments. SEIQoL-DW scores were worse for caregivers than for patients, probably explained by shifts in patient expectations with disease progression.Keywords
This publication has 8 references indexed in Scilit:
- Quality of life in ALS is maintained as physical function declinesNeurology, 2001
- The amyotrophic lateral sclerosis assessment questionnaire (ALSAQ-40): tests of data quality, score reliability and response rate in a survey of patientsJournal of the Neurological Sciences, 2000
- Quality of life in ALS depends on factors other than strength and physical functionNeurology, 2000
- The psychological impact of MND on patients and carersJournal of the Neurological Sciences, 1998
- A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profileJournal of the Neurological Sciences, 1997
- A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDSBMJ, 1996
- Relationship of the Tufts Quantitative Neuromuscular Exam (TQNE) and the Sickness Impact Profile (SIP) in measuring progression of ALSNeurology, 1996
- The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptabilityPalliative Medicine, 1995