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Disparity between perceived needs and service provision: a cross-sectional study of Italians with multiple sclerosis

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Abstract

Background

Assessing the coverage by public or private resources in meeting health-related and social-related needs may be useful for service planning and guide optimization of care, important especially in view of an increase in the prevalence of multiple sclerosis (MS).

Methods

An ad hoc questionnaire assessed satisfaction of health-related and social care–related needs in a cross-sectional study of 1014 people with MS identified through MS outpatient clinics and local branches and social media channels of the Italian MS Society.

Results

87.1% and 79.8% of the responders had experienced at least one health-related or social-related need, respectively. The study demonstrated significant gaps between perceived needs and service provision. Rehabilitation, residential care, and psychological support were most frequently unsatisfied health-related needs, while the more commonly unmet social-related needs were financial support, elimination of architectural barriers, workplace adaptations, and career guidance. The multivariate analysis highlighted that the satisfaction of health-related needs was primarily associated with geographic area of residence. Social-related needs correlated with both clinical and sociodemographic aspects.

Conclusion

The results provide insight into the range of interventions, care, and support people with MS report to be important to them at different points in their disease trajectory. More emphasis should be put on the inequitable distribution of NHS services in different geographic areas of Italy as well as on particularly fragile subgroups of the MS population (older individuals, and those with higher levels of disability) because the care of these individuals continues to be assumed by the family.

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Acknowledgements

We wish to thank the people with MS who participated in this study and the volunteers from the local branches of the Italian MS Society who made an important contribution to making this study possible.

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Authors and Affiliations

  1. Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), via Operai 40, 16149, Genoa, Italy

    Michela Ponzio, Andrea Tacchino, Giampaolo Brichetto & Michele Messmer Uccelli

  2. Fondazione CENSIS, Rome, Italy

    Concetta Vaccaro

  3. AISM Rehabilitation Service, Italian Multiple Sclerosis Society, Genoa, Italy

    Giampaolo Brichetto

  4. Department of Life Science, University of Siena, Siena, Italy

    Mario Alberto Battaglia

Authors
  1. Michela Ponzio
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  2. Andrea Tacchino
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  3. Concetta Vaccaro
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  4. Giampaolo Brichetto
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  5. Mario Alberto Battaglia
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  6. Michele Messmer Uccelli
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Correspondence to Michela Ponzio.

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Ponzio, M., Tacchino, A., Vaccaro, C. et al. Disparity between perceived needs and service provision: a cross-sectional study of Italians with multiple sclerosis. Neurol Sci 40, 1137–1144 (2019). https://doi.org/10.1007/s10072-019-03780-z

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  • DOI: https://doi.org/10.1007/s10072-019-03780-z

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