Assessment demonstrates reduced quality of life in children with childhood-onset hereditary spastic paraplegia, indicating priority areas for supportive interventions.
We assessed health‐related quality of life (HRQoL) in 80 children with rare hereditary spastic paraplegias using the Caregiver Priorities and Child Health Index of Life with Disabilities and clinician‐reported outcomes. HRQoL was consistently reduced, particularly in relation to motor, autonomic, and bulbar symptoms. Children with complex HSP phenotypes had lower scores than those with pure forms. Scores correlated with established clinical scales but declined with age only in HSP‐ SPG11 and HSP‐ ZFYVE26 . These findings identify key determinants of reduced quality of life and highlight clinical targets for supportive interventions in childhood‐onset hereditary spastic paraplegia.
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Schmidt et al. (2025) studied this question.
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