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Heterogeneity in ALSFRS-R decline and survival: a population-based study in Italy.
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- Author(s): Mandrioli, Jessica; Biguzzi, Sara; Guidi, Carlo; Sette, Elisabetta; Terlizzi, Emilio; Ravasio, Alessandro; Casmiro, Mario; Salvi, Fabrizio; Liguori, Rocco; Rizzi, Romana; Pietrini, Vladimiro; Borghi, Annamaria; Rinaldi, Rita; Fini, Nicola; Chierici, Elisabetta; Santangelo, Mario; Granieri, Enrico; Mussuto, Vittoria; Pasqua, Silvia; Georgoulopoulou, Eleni
- Source:
Neurological Sciences. Dec2015, Vol. 36 Issue 12, p2243-2252. 10p. 4 Charts, 2 Graphs. - Source:
- Additional Information
- Subject Terms:
- Subject Terms:
- Abstract: Very few studies examined trend over time of the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and factors influencing it; previous studies, then, included only patients attending tertiary ALS Centres. We studied ALSFRS-R decline, factors influencing this trend and survival in a population-based setting. From 2009 onwards, a prospective registry records all incident ALS cases among residents in Emilia Romagna (population: 4.4 million). For each patient, demographic and clinical details (including ALSFRS-R) are collected by caring physicians at each follow-up. Analysis was performed on 402 incident cases (1279 ALSFRS-R assessments). The average decline of the ALSFRS-R was 0.60 points/month during the first year after diagnosis and 0.34 points/month in the second year. ALSFRS-R decline was heterogeneous among subgroups. Repeated measures mixed model showed that ALSFRS-R score decline was influenced by age at onset (p < 0.01), phenotype (p = 0.01), body mass index (BMI) (p < 0.01), progression rate at diagnosis (ΔFS) (p < 0.01), El Escorial Criteria-Revised (p < 0.01), and FVC% at diagnosis (p < 0.01). Among these factors, at multivariate analysis, only age, site of onset and ΔFS independently influenced survival. In this first population-based study on ALSFRS-R trend, we confirm that ALSFRS-R decline is not homogeneous among ALS patients and during the disease. Factors influencing ALSFRS-R decline may not match with those affecting survival. These disease modifiers should be taken into consideration for trials design and in clinical practice during discussions with patients on prognosis. [ABSTRACT FROM AUTHOR]
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