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 patien ts 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 p atient's relationships, functional capacity and mental health. HRQOL measur es include information about patients' physical impairments, functional lev el, and psychosocial status, This study compares a tool designed for the AL S population, the Sickness Impact Profile ALS-19 (SIP/ALS-19), and two tool s 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 wo uld 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 t o 19 subjects diagnosed with ALS. The scores for each test were ranked and analyzed for agreement using the Spearman rank correlation coefficient. Res ults: 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 correla tion with the QWB SA. CONCLUSIONS: The study did not demonstrate significant correlation among th e three quality of life measures. The SIP/ALS-19, SF-36, and QWB SA each ha ve a different focus in measuring HRQOL. The healthcare practitioner should consider the patient's stage of disease, treatment goals, and type of inte rventions planned when selecting a HRQOL tool for the ALS patient.