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Open Access Research article

What do multiple sclerosis patients and their caregivers perceive as unmet needs?

Lorena Lorefice1*, Gioia Mura2, Giulia Coni1, Giuseppe Fenu1, Claudia Sardu3, Jessica Frau1, Giancarlo Coghe1, Marta Melis1, Maria Giovanna Marrosu1 and Eleonora Cocco1

Author Affiliations

1 Multiple Sclerosis Center, University of Cagliari, via Is Guadazzonis, 2, Cagliari 09126, Italy

2 Consultation Liaison Psychiatric Unit at the University Hospital of Cagliari, University of Cagliari and AOU, Cagliari, Italy

3 Department of Public Health, University of Cagliari, Cagliari, Italy

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BMC Neurology 2013, 13:177  doi:10.1186/1471-2377-13-177

Published: 15 November 2013

Abstract

Background

Multiple sclerosis (MS) has a major impact on the physical, psychological and social life of patients and their families. The aim of this study was to evaluate the different perceptions of patients and caregivers about management of MS, particularly about the same items, to gather information to ameliorate the care of patients.

Methods

We evaluated what MS patients and caregivers perceive as unmet needs and compared patients’ opinions with caregivers’ opinions using a multidimensional questionnaire. The questionnaire was specifically designed for the study, taking into account different aspects of the global care perceived by patients and care givers, such as information about MS, medical treatment and rehabilitation, patients’ relationships with medical staff and their psychological and social life.

Results

We administered the questionnaire to 497 patients and 206 caregivers. Results showed that the majority of participants were satisfied with medical staff but expressed a desire that staff be more forthcoming with information about MS. As for medical treatment concerns, more patients found there to be useful a multidisciplinary approach than caregivers did. Both required psychological support for patients but patients felt a greater need for it at the time of diagnosis, whereas caregivers felt it was required post-diagnosis. Both reported significant strains on patient relationships at work but no effect on other social interactions.

Conclusions

A better understanding of MS patient needs, starting from the point of view of patients and caregivers, could have a great impact on quality of life and on management of the disease.