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

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Abstract

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 < 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”.

Conclusions

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.

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Acknowledgements

The authors thank Quintas Rui, Motta Saba (Scientific Directorate), Finocchiaro Gaetano, Silvani Antonio, Simonetti Giorgia, Petruzzi Alessandra (Department of Neuro-Oncology), Di Meco Francesco, Ferroli Paolo, Franzini Angelo (Department of Neurosurgery), Confalonieri Paolo, Vela Gomez Jesus (Department of Clinical Neuroscience- Day Hospital), Cordone Angelo, Bettamio Valentina, Carulli Wania, Moreschi Clara, Reggiori Barbara (Health Directorate) from Neurological Institute C. Besta IRCCS Foundation for their valuable contributions to the project.

The disability case management project for neurooncological patients is a No profit project (2014-2016) sponsored by the Neurological Institute C. Besta IRCCS Foundation.

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Authors and Affiliations

  1. Neurology, Public Health and Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy

    C Scaratti, M Leonardi, R Ayadi & S Schiavolin

  2. Department of Neurosurgery, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy

    A Saladino, M Broggi & G Tringali

  3. Unit of Molecular Neuro-Oncology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy

    E Anghileri

  4. Department of Neuroncology, Unit of Neurology II, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy

    E Lamperti

  5. Neurosurgery Department, Radiotherapy Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy

    L Fariselli

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  1. C Scaratti
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  2. M Leonardi
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  3. A Saladino
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  4. E Anghileri
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  9. G Tringali
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  10. S Schiavolin
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Corresponding author

Correspondence to S Schiavolin.

Ethics declarations

This study was approved by the local ethics committee and all patients and caregivers signed an informed consent form.

Conflict of interest

The authors declare that they have no conflict of interests.

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Scaratti, C., Leonardi, M., Saladino, A. et al. Needs of neuro-oncological patients and their caregivers during the hospitalization and after discharge: results from a longitudinal study. Support Care Cancer 25, 2137–2145 (2017). https://doi.org/10.1007/s00520-017-3619-6

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  • DOI: https://doi.org/10.1007/s00520-017-3619-6

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