title: Needs of neuro-oncological patients and their caregivers during the hospitalization and after discharge: results from a longitudinal study.
abstract: 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.
  
  
  
  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.
  
  
  
  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 < 0.001). NEQ total score significantly correlated with FSQ factors "emotional burden" and "need for knowledge about the disease" and CNA total and factors scores at T0 and T1. At T0, NEQ correlated significantly with FSQ factor "thoughts about death", while at T1, it correlated with FSQ factor "problems in social involvement".
  
  
  
  It is crucial to plan an assessment of patients' and caregivers' needs from the very beginning, in order to identify those individuals potentially at risk of developing high level of distress and to provide information and support following the illness trajectory of the brain tumor.
authors.affiliation: Neurology, Public Health and Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy.
authors.forename: C
authors.initials: C
authors.lastname: Scaratti
authors.affiliation: Neurology, Public Health and Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy.
authors.forename: M
authors.initials: M
authors.lastname: Leonardi
authors.affiliation: Department of Neurosurgery, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Saladino
authors.affiliation: Unit of Molecular Neuro-Oncology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: E
authors.initials: E
authors.lastname: Anghileri
authors.affiliation: Department of Neurosurgery, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: M
authors.initials: M
authors.lastname: Broggi
authors.affiliation: Department of Neuroncology, Unit of Neurology II, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: E
authors.initials: E
authors.lastname: Lamperti
authors.affiliation: Neurosurgery Department, Radiotherapy Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: L
authors.initials: L
authors.lastname: Fariselli
authors.affiliation: Neurology, Public Health and Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy.
authors.forename: R
authors.initials: R
authors.lastname: Ayadi
authors.affiliation: Department of Neurosurgery, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: G
authors.initials: G
authors.lastname: Tringali
authors.affiliation: Neurology, Public Health and Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy. silvia.schiavolin@istituto-besta.it.
authors.forename: S
authors.identifier: 0000-0002-5391-7539
authors.initials: S
authors.lastname: Schiavolin
mesh_terms: D000223:Adaptation, Psychological / Q000502:physiology*; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D005260:Female; D006760:Hospitalization; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010351:Patient Discharge; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Burden; Caregivers; Home setting; Hospitalization; Needs; Neuro-oncological patients