Designing and Validating a Hereditary Spastic Paraplegia-Specific Quality of Life Rating Scale (HSPQoL).

ABSTRACT: Patients with Hereditary Spastic Paraplegia (HSP) report reduced quality of life (QoL) compared to the general population. Generic QoL measures do not address disease-specific aspects such as spasticity, access to specialty HSP clinics, and bladder symptoms. We designed and validated a HSP-specific QoL scale (HSPQoL), intended for use in standard clinical settings and clinical trials. HSP-specific items were added to the RAND 36-Item Short Form Health Survey (SF-36) to form HSPQoL. Following literature review/expert input, 23 items were presented to a panel of HSP clinicians, patients, and patient representatives (n = 12) using a modified Delphi process. Items were ranked for clarity and relevance (inclusion criteria: 80% consensus). 21/23 items met the inclusion criteria. Interviews with

SUBMITTER: Siow SF 

PROVIDER: S-EPMC11649815 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature