Needs of neuro-oncological patients and their caregivers during the hospitalization and after discharge: results from a longitudinal study

Purpose The aims of this study are to identify neuro-oncological patients’ and their caregivers’ needs during hospitalization (T0) and at 4 months after discharge (T1); to analyze the longitudinal changes in patients’ and caregivers’ needs and burden; to identify correlations between patients’ needs and caregivers’ burden and needs. Methods A pilot observational longitudinal study was conducted on 94 neuro-oncological patients and their caregivers using NEQ to evaluate patients’ needs, CNA, and FSQ for caregivers’ needs and burden at T0 and T1. Descriptive statistics were performed to illustrate the distribution of questionnaires’ scores. The longitudinal change of NEQ, FSQ, and CNA scores were investigated using Wilcoxon test. Spearman’s correlation was used to measure the relation between NEQ and FSQ and CNA scores. Results The most frequent patients and caregivers’ needs were material and informative. Needs tend to decrease over time; in particular FSQ factor “need for knowledge about the disease”, CNA factor “Information/communication needs” and CNA total score significantly decreased ( p