Neuropsychological assessment practices in PRECISION-ALS: challenges and opportunities for harmonization.
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Costello Emmet, De Vocht Joke, Beswick Emily, Mac Domhnaill Éanna, Peelo Colm, Foucher Juliette, Mayberry Emily J, Chiwera Theresa, Hiemstra Fenna, Caravaca Puchades Alejandro, Iazzolino Barbara, Palumbo Francesca, Alves Inês, Kasper Elisabeth, Galvin Miriam, Heverin Mark, Ingre Caroline, Mcdermott Christopher J, Shaw Pamela, Al-Chalabi Ammar, Van Den Berg Leonard H, Povedano Panadés Mónica, Chiò Adriano, Carvalho Mamede De, Bencheikh Sofiane, Corcia Philippe, Mouzouri Mohammed, Hermann Andreas, Abrahams Sharon, Pender Niall, Van Damme Philip, Hardiman Orla
Аннотация
METHODS: Representatives from PRECISION-ALS sites were surveyed with a semi-structured interview, gathering information on how people with ALS are assessed for cognitive/behavioral change, including how they are initially screened, classified as impaired/unimpaired, and followed up longitudinally. Assessment practices across PRECISION-ALS sites were summarized using descriptive analysis.
RESULTS: Ten of the eleven PRECISION-ALS sites perform cognitive and/or behavioral screening at least once during the course of the disease, using the Edinburgh Cognitive and Behavioral ALS Screen, either for clinical or research purposes. All centers categorize impairment, but differ how it is defined, with some using local norms, and others using other countries' norms. Most sites account for age and education, but differ in how these factors are considered. Longitudinal protocols vary in terms of the number of assessments, time intervals, and use of alternative versions. Behavioral screening is more consistently implemented, with the ECAS caregiver interview as the standard tool, however there is a lack of clarity in how this data is applied. Many sites supplement cognitive and behavioral screening with additional measures of mood and/or neuropsychiatric symptoms.
CONCLUSIONS: These findings illustrate areas of commonality and divergence in neuropsychological screening practices. Site-specific variations are likely to confound research involving cross-country data-sharing. PRECISION-ALS, in generating prospective population-based datasets, will provide agreed harmonized protocols for neuropsychological assessment across participating sites.