Agreement among three quality of life measures in patients with ALS

Aim: To determine the concurrent validity of three self-administered health-related quality of life (HRQOL) questionnaires when administered to patients with amyotrophic lateral sclerosis (ALS). Background: ALS is the most common motor neuron disease among adults. As a rapidly progressive and fatal disease, ALS has devastating effects on the patient's relationships, functional capacity and mental health. HRQOL measures include information about patients' impairments, functional level, and psychosocial status. This study compares a tool designed for the ALS population, the Sickness Impact Profile ALS-19 (SIP/ALS19), and two tools designed to be used in any population, the Quality of Wellbeing Scale SA (QWB SA), and the SF-36 Health Survey (SF-36). Correlation of the scores would suggest that each tool is valid as a stand-alone measurement of quality of life for this patient population. Methods: The SIP/ALS-19, the SF-36, and the QWB SA were self-administered to 19 subjects diagnosed with ALS. The scores for each test were ranked and analyzed for agreement using the Spearman rank correlation coefficient. Results: The SIP/ALS-19 demonstrated moderate to good correlation with the QWB SA and fair correlation with the SF-36. The SF-36 had little to no correlation with the QWB physical SA. Conclusions: The study did not demonstrate significant correlation among the three quality of life measures. The SIP/ALS-19, SF-36, and QWB SA each have a different focus in measuring HRQOL. The healthcare practitioner should consider the patient's stage of disease, treatment goals, and type of interventions planned when selecting a HRQOL tool for the ALS patient.