SAFE scale Italian validation

This dataset was collected as part of the European project HORIZON-MSCA-2022-SE-01 “DOC-BOX: Development of a multimodal toolbox to ensure a fast and reliable diagnosis of consciousness disorders”. Specifically, one of the aims of the DOC-BOX project concerns the engagement of informal caregivers of patients with Disorder of Consciousness (DoC) in the clinical routine (Work Package 3). Within this framework, the SAFE scale was developed to collect the opinion of informal caregivers of patients with DoC about the patient’s ability to perform specific behaviors. The SAFE is composed by 14 items derived from the Coma Recovery Scale-revised item indicative of cognitively-mediated behaviors (i.e., indicative of a diagnosis of at least Minimally Conscious State minus). The validation procedure of the SAFE scale included the explanation of the scale to the informal caregivers of patients with DoC by an expert clinician. Starting from this day, informal caregivers observed their respective patients with DoC for 15 days. At the end of this observation period (i.e., T0), informal caregivers were required to fill in the SAFE scale by responding whether, in their opinion, the patient was able to perform a specific behavior in the previous 15 days (yes/no replies). Two days after (i.e., T1), informal caregivers were required to fill in the SAFE scale again, always by referring to the same observation period so as to test the test-retest reliability. Furthermore, clinicians independently assessed the patients with DoC multiple times during the above 15 days of observation and the patient’s best performance was taken into account. The dataset contains data from 42 informal caregivers and their respective patients with DoC, collected in one neurological institute and two neuro-rehabilitation centers between 2021-2025. Specifically, the dataset includes informal caregiver’s sociodemographic data, patient’s sociodemographic and clinical data, informal caregiver’s responses to the SAFE item at T0 and T1, and the patient’s best performance at the CRS-r along with their diagnosis. See the Data Dictionary file for a detailed description of the dataset.