Validation of the Italian version of a patient-reported outcome measure for Hereditary Spastic Paraplegia.

ABSTRACT:

Background and aim

Patient-reported outcome measures (PROMs) are recognized as valuable measures in the clinical setting. In 2018 we developed the Italian version of the "Hereditary Spastic Paraplegia-Self Notion and Perception Questionnaire" (HSP-SNAP), a disease-specific questionnaire that collects personal perception on motor symptoms related to HSP such as stiffness, weakness, imbalance, reduced endurance, fatigue and pain. In this study our primary aim was to assess the questionnaire validity and reliability. Our secondary aim was to characterize the symptoms "perceived" by patients with HSP and compare them with those "perceived" by age-matched healthy subjects.

Methods

The 12-item HSP-SNAP questionnaire was submitted to 20 external judges for comprehensibility and to

SUBMITTER: Diella E 

PROVIDER: S-EPMC10984402 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature