Friedreich's Ataxia-Health Index Development and Validation of a Novel Disease-Specific Patient-Reported Outcome Measure

Friedreich's Ataxia-Health Index Development and Validation of a Novel Disease-Specific Patient-Reported Outcome Measure, Jamison Seabury, Spencer Rosero, Anika Varma, Jennifer Weinstein, Charlotte Engebrecht, Nuran Dilek, John Heatwole, Danae Alexandrou, Brittany Cohen, Jane Larkindale, David R. Lynch, Courtney Park, Sub H. Subramony, Ellen Wagner, Susan Walther, McKenzie Wells, Christine Zizzi, Chad Heatwole Neurol Clin Pract Oct 2023, 13 (5) e200180; DOI: 10.1212/CPJ.0000000000200180 

 Participants with FA identified 18 symptomatic themes of importance to be included as subscales in the FA-HI. The FA-HI demonstrates high internal consistency and test-retest reliability, and it was identified by participants as highly relevant, comprehensive, and easy to complete. FA-HI total and subscale scores statistically differentiated between subgroups of participants with varying levels of disease burden.