Purpose: Multiple sclerosis (MS) has a significant impact on all aspects of patient quality of life (QoL). Furthermore, the fear of relapses and the feelings of patients during relapses must be taken into account in care. The objective of this work was to validate the PERSEPP scale ("PERception de la Sclérose En Plaques et de ses Poussées"), a new QoL evaluation scale for relapsing-remitting forms of MS.
Methods: Relapsing-remitting patients were included in a multicenter study. Various validation criteria of this scale were analyzed: acceptability, construct validity (internal and external validity), and reliability (internal consistency and reproducibility test-retest). Responsiveness will be studied in order to complete the validation process.
Results: The responses of 305 MS patients were analyzed. The process of reducing the items led us to retain 66 items of a total of 112 items. The 66-item PERSEPP scale (final version) was well accepted. Five dimensions (33 items) make up the scale: social support (α = 0.81), relationship difficulties (α = 0.71), fatigue (α = 0.74), state of mind and associated sleep disorders (α = 0.78), and time perspective (α = 0.75). Three additional modules (33 items) explore coping (α = 0.60), symptoms (α = 0.89), and treatment (α = 0.92). Test-retest reliability, measured by the intraclass correlation coefficient (ICC), was acceptable (0.72 < ICC < 0.92).
Conclusions: The PERSEPP scale has been validated and could be used in clinical trials and in daily practice. Additional studies will then complete the validation process.