Seeking a measure of clinically meaningful change in ALS

Autor: Raymond R. Goetz, Merit Cudkowicz, Hiroshi Mitsumoto, Jonathan S. Katz, William S. David, Jonathan D. Glass, Judith G. Rabkin, Stanley H. Appel, Martin McElhiney, Dallas A. Forshew, Robert G. Miller, Ericka Simpson
Rok vydání: 2014
Předmět:
Zdroj: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 15:398-405
ISSN: 2167-9223
2167-8421
Popis: We sought to identify a method to assess 'clinically meaningful change' perceived by patients, caregivers and clinical raters in relation to changes in ALSFRS-R scores at three-month intervals. In this five-site study, 81 patient-caregiver dyads were interviewed at baseline, three, and six months to assess changes in ALSFRS-R in relation to perceived occurrence of change, its magnitude and impact. Ratings by patients, caregivers and clinical raters were analyzed over three-month intervals within and between respondent groups. We found that patients, clinical raters, and caregivers agreed about 80% of the time about whether change occurred, and in what direction, on each of three visits. The perceived magnitude of change for the four domains measured by the ALSFRS-R was correlated with ratings of impact within respondent groups and across time. We also found moderate associations between changes in ALSFRS-R domain scores and judgments of symptom impact as rated by patient, caregiver and clinical rater. Independent measures (Quality of Life, Goal Assessment Scaling) showed no consistent correlations with ALSFRS-R change scores. In conclusion, the use of scales to assess the perceived magnitude and impact of change corresponding with the domains of the ALSFRS-R may be a step towards understanding of the clinical meaning of changes in that measure.
Databáze: OpenAIRE
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