Assessing individual quality of life in amyotrophic lateral sclerosis

Background: Quality of life (QoL) assessment in amyotrophic lateral scleros is (ALS) has typically involved the use of general or disease-specific heal th status questionnaires. This study assessed the feasibility of using a pa tient-centered approach to QoL measurement in ALS. Objectives: (1) To asses s the internal consistency reliability and validity of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) as a measure of QoL in A LS. (2) To provide a brief description of QoL in ALS, and to examine the re lationships between QoL, illness severity and psychological distress in thi s group. Methods: Twenty-six patients with ALS were recruited through the I rish Register for ALS/motor neurone disease (MND). Illness severity was ass essed with the ALS Functional Rating Scale (ALSFRS). Levels of psychologica l distress were measured with the Hospital Anxiety and Depression Scale (HA DS). Individual QoL was assessed with SEIQoL. Results: Patients were at var ious stages of ALS. Mean levels of anxiety and depression were in the norma l range. Twenty-one patients completed SEIQoL; five patients completed a sh orter version, SEIQoL-Direct Weighting (SEIQoL-DW). Internal consistency re liability and validity results for SEIQoL were high. Conclusions: SEIQoL is generally acceptable for use in ALS in terms of its practical feasibility, and has high internal validity and consistency reliability in this patient group. However, patients severely disabled by ALS may not be able to compl ete SEIQoL; further research is required to confirm the use of SEIQoL-DW as an alternative measure of individual QoL in ALS.