Skip to main content
Top
Published in: Neurological Sciences 6/2019

01-06-2019 | Multiple Sclerosis | Original Article

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

Authors: Michela Ponzio, Andrea Tacchino, Concetta Vaccaro, Giampaolo Brichetto, Mario Alberto Battaglia, Michele Messmer Uccelli

Published in: Neurological Sciences | Issue 6/2019

Login to get access

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.
Literature
1.
3.
go back to reference Battaglia MA, Bezzini D (2017) Estimated prevalence of multiple sclerosis in Italy in 2015. Neurol Sci 38(3):473–479CrossRefPubMed Battaglia MA, Bezzini D (2017) Estimated prevalence of multiple sclerosis in Italy in 2015. Neurol Sci 38(3):473–479CrossRefPubMed
4.
go back to reference Milo R, Kahana E (2010) Multiple sclerosis: geoepidemiology, genetics and the environment. Autoimmun Rev 9(5):A387–A394CrossRefPubMed Milo R, Kahana E (2010) Multiple sclerosis: geoepidemiology, genetics and the environment. Autoimmun Rev 9(5):A387–A394CrossRefPubMed
5.
6.
go back to reference Asche CV, Singer ME, Jhaveri M, Chung H, Miller A (2010) All-cause health care utilization and costs associated with newly diagnosed multiple sclerosis in the United States. J Manag Care Pharm 16(9):703–712PubMed Asche CV, Singer ME, Jhaveri M, Chung H, Miller A (2010) All-cause health care utilization and costs associated with newly diagnosed multiple sclerosis in the United States. J Manag Care Pharm 16(9):703–712PubMed
7.
go back to reference Kobelt G, Thompson A, Berg J, Gannedahl M, Eriksson J, MSCOI Study Group; European Multiple Sclerosis Platform (2017) New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler 23(8):1123–1136CrossRefPubMedPubMedCentral Kobelt G, Thompson A, Berg J, Gannedahl M, Eriksson J, MSCOI Study Group; European Multiple Sclerosis Platform (2017) New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler 23(8):1123–1136CrossRefPubMedPubMedCentral
8.
go back to reference Ytterberg C, Johansson S, Gottberg K, Holmqvist LW, von Koch L (2008) Perceived needs and satisfaction with care in people with multiple sclerosis: a two-year prospective study. BMC Neurol 8:36CrossRefPubMedPubMedCentral Ytterberg C, Johansson S, Gottberg K, Holmqvist LW, von Koch L (2008) Perceived needs and satisfaction with care in people with multiple sclerosis: a two-year prospective study. BMC Neurol 8:36CrossRefPubMedPubMedCentral
9.
go back to reference Forbes A, While A, Taylor M (2007) What people with multiple sclerosis perceive to be important to meeting their needs. J Adv Nurs 58:11–22CrossRefPubMed Forbes A, While A, Taylor M (2007) What people with multiple sclerosis perceive to be important to meeting their needs. J Adv Nurs 58:11–22CrossRefPubMed
10.
go back to reference Patten SB, Williams JV, Lavorato DH, Terriff D, Metz LM, Berzins S, Bulloch AG (2012) Perceived met and unmet health-care needs in a community population with multiple sclerosis. Int J MS Care 14(1):2–8CrossRefPubMedPubMedCentral Patten SB, Williams JV, Lavorato DH, Terriff D, Metz LM, Berzins S, Bulloch AG (2012) Perceived met and unmet health-care needs in a community population with multiple sclerosis. Int J MS Care 14(1):2–8CrossRefPubMedPubMedCentral
11.
go back to reference Edmonds P, Vivat B, Burman R, Silber E, Higginson IJ (2007) ‘Fighting for everything’: service experiences of people severely affected by multiple sclerosis. Mult Scler 13(5):660–667CrossRefPubMed Edmonds P, Vivat B, Burman R, Silber E, Higginson IJ (2007) ‘Fighting for everything’: service experiences of people severely affected by multiple sclerosis. Mult Scler 13(5):660–667CrossRefPubMed
12.
13.
go back to reference Rieckmann P, Centonze D, Elovaara I, Giovannoni G, Havrdová E, Kesselring J, Kobelt G, Langdon D, Morrow SA, Oreja-Guevara C, Schippling S, Thalheim C, Thompson H, Vermersch P, Aston K, Bauer B, Demory C, Giambastiani MP, Hlavacova J, Nouvet-Gire J, Pepper G, Pontaga M, Rogan E, Rogalski C, van Galen P, Ben-Amor AF (2017) Members of the MS in the 21st Century Steering Group. Mult Scler Relat Disord 19:153–160CrossRefPubMed Rieckmann P, Centonze D, Elovaara I, Giovannoni G, Havrdová E, Kesselring J, Kobelt G, Langdon D, Morrow SA, Oreja-Guevara C, Schippling S, Thalheim C, Thompson H, Vermersch P, Aston K, Bauer B, Demory C, Giambastiani MP, Hlavacova J, Nouvet-Gire J, Pepper G, Pontaga M, Rogan E, Rogalski C, van Galen P, Ben-Amor AF (2017) Members of the MS in the 21st Century Steering Group. Mult Scler Relat Disord 19:153–160CrossRefPubMed
14.
go back to reference Polman CH, Reingold SC, Banwell B, Clanet M, Cohen JA, Filippi M, Fujihara K, Havrdova E, Hutchinson M, Kappos L, Lublin FD, Montalban X, O'Connor P, Sandberg-Wollheim M, Thompson AJ, Waubant E, Weinshenker B, Wolinsky JS (2011) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol 69(2):292–302CrossRefPubMedPubMedCentral Polman CH, Reingold SC, Banwell B, Clanet M, Cohen JA, Filippi M, Fujihara K, Havrdova E, Hutchinson M, Kappos L, Lublin FD, Montalban X, O'Connor P, Sandberg-Wollheim M, Thompson AJ, Waubant E, Weinshenker B, Wolinsky JS (2011) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol 69(2):292–302CrossRefPubMedPubMedCentral
15.
go back to reference Ponzio M, Tacchino A, Zaratin P, Vaccaro C, Battaglia MA (2015) Unmet care needs of people with a neurological chronic disease: a cross-sectional study in Italy on multiple sclerosis. Eur J Pub Health 25(5):775–780CrossRef Ponzio M, Tacchino A, Zaratin P, Vaccaro C, Battaglia MA (2015) Unmet care needs of people with a neurological chronic disease: a cross-sectional study in Italy on multiple sclerosis. Eur J Pub Health 25(5):775–780CrossRef
16.
go back to reference Collins CD, Ivry B, Bowen JD, Cheng EM, Dobson R, Goodin DS, Lechner-Scott J, Kappos L, Galea I (2016) A comparative analysis of patient-reported expanded disability status scale tools. Mult Scler 22(10):1349–1358CrossRefPubMed Collins CD, Ivry B, Bowen JD, Cheng EM, Dobson R, Goodin DS, Lechner-Scott J, Kappos L, Galea I (2016) A comparative analysis of patient-reported expanded disability status scale tools. Mult Scler 22(10):1349–1358CrossRefPubMed
17.
go back to reference Kurtzke JF (1983) Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurol 33:1444–1452CrossRef Kurtzke JF (1983) Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurol 33:1444–1452CrossRef
18.
go back to reference StataCorp (2017) Stata Statistical Software: Release 15. StataCorp LLC, College Station StataCorp (2017) Stata Statistical Software: Release 15. StataCorp LLC, College Station
19.
go back to reference Lonergan R, Kinsella K, Fitzpatrick P, Duggan M, Jordan S, Bradley D, Hutchinson M, Tubridy N (2015) Unmet needs of multiple sclerosis patients in the community. Mult Scler Relat Disord 4(2):144–150CrossRefPubMed Lonergan R, Kinsella K, Fitzpatrick P, Duggan M, Jordan S, Bradley D, Hutchinson M, Tubridy N (2015) Unmet needs of multiple sclerosis patients in the community. Mult Scler Relat Disord 4(2):144–150CrossRefPubMed
20.
go back to reference Potemkowski A, Brola W, Ratajczak A, Ratajczak M, Kowalewski M, Lewita M, Kapica-Topczewska K, Tarasiuk J, Stępień A, Gocyła-Dudar K, Zaborski J, Bartosik-Psujek H (2017) The most important psychological and psychosocial needs of Polish multiple sclerosis patients and their significant others. Neuropsychiatr Dis Treat 13:1817–1824CrossRefPubMedPubMedCentral Potemkowski A, Brola W, Ratajczak A, Ratajczak M, Kowalewski M, Lewita M, Kapica-Topczewska K, Tarasiuk J, Stępień A, Gocyła-Dudar K, Zaborski J, Bartosik-Psujek H (2017) The most important psychological and psychosocial needs of Polish multiple sclerosis patients and their significant others. Neuropsychiatr Dis Treat 13:1817–1824CrossRefPubMedPubMedCentral
21.
go back to reference Borreani C, Bianchi E, Pietrolongo E, Rossi I, Cilia S, Giuntoli M, Giordano A, Confalonieri P, Lugaresi A, Patti F, Grasso MG, de Carvalho LL, Palmisano L, Zaratin P, Battaglia MA, Solari A, PeNSAMI project (2014) Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention. PLoS One 9(10):e109679CrossRefPubMedPubMedCentral Borreani C, Bianchi E, Pietrolongo E, Rossi I, Cilia S, Giuntoli M, Giordano A, Confalonieri P, Lugaresi A, Patti F, Grasso MG, de Carvalho LL, Palmisano L, Zaratin P, Battaglia MA, Solari A, PeNSAMI project (2014) Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention. PLoS One 9(10):e109679CrossRefPubMedPubMedCentral
22.
go back to reference Freeman JA, Langdon DW, Hobart JC, Thompson AJ (1997) The impact of inpatient rehabilitation on progressive multiple sclerosis. Ann Neurol 42:236–244CrossRefPubMed Freeman JA, Langdon DW, Hobart JC, Thompson AJ (1997) The impact of inpatient rehabilitation on progressive multiple sclerosis. Ann Neurol 42:236–244CrossRefPubMed
23.
go back to reference Kraft GH (1999) Rehabilitation still the only way to improve function in multiple sclerosis. Lancet 354:2016–2017CrossRefPubMed Kraft GH (1999) Rehabilitation still the only way to improve function in multiple sclerosis. Lancet 354:2016–2017CrossRefPubMed
24.
go back to reference Wiles CM, Newcombe RG, Fuller KJ, Shaw S, Furnival-Doran J, Pickersgill TP, Morgan A (2001) Controlled randomized cross over trial of the effects of physiotherapy on mobility in chronic multiple sclerosis. J Neurol Neurosurg Psychiatry 70:174–179CrossRefPubMedPubMedCentral Wiles CM, Newcombe RG, Fuller KJ, Shaw S, Furnival-Doran J, Pickersgill TP, Morgan A (2001) Controlled randomized cross over trial of the effects of physiotherapy on mobility in chronic multiple sclerosis. J Neurol Neurosurg Psychiatry 70:174–179CrossRefPubMedPubMedCentral
25.
go back to reference Galobardes B, Lynch J, Smith GD (2007) Measuring socioeconomic position in health research. Br Med Bull 81-82:21–37CrossRefPubMed Galobardes B, Lynch J, Smith GD (2007) Measuring socioeconomic position in health research. Br Med Bull 81-82:21–37CrossRefPubMed
27.
go back to reference Battaglia M, Kobelt G, Ponzio M, Berg J, Capsa D, Dalén J, European Multiple Sclerosis Platform (2017) New insights into the burden and costs of multiple sclerosis in Europe: results for Italy. Mult Scler 23(2_suppl):104–116CrossRefPubMed Battaglia M, Kobelt G, Ponzio M, Berg J, Capsa D, Dalén J, European Multiple Sclerosis Platform (2017) New insights into the burden and costs of multiple sclerosis in Europe: results for Italy. Mult Scler 23(2_suppl):104–116CrossRefPubMed
28.
go back to reference Ponzio M, Gerzeli S, Brichetto G, Bezzini D, Mancardi GL, Zaratin P, Battaglia MA (2015) Economic impact of multiple sclerosis in Italy: focus on rehabilitation costs. Neurol Sci 36(2):227–234CrossRefPubMed Ponzio M, Gerzeli S, Brichetto G, Bezzini D, Mancardi GL, Zaratin P, Battaglia MA (2015) Economic impact of multiple sclerosis in Italy: focus on rehabilitation costs. Neurol Sci 36(2):227–234CrossRefPubMed
29.
go back to reference Dennison L, Moss-Morris R, Chalder T (2009) A review of psychological correlates of adjustment in patients with multiple sclerosis. Clin Psychol Rev 29(2):141–153CrossRefPubMed Dennison L, Moss-Morris R, Chalder T (2009) A review of psychological correlates of adjustment in patients with multiple sclerosis. Clin Psychol Rev 29(2):141–153CrossRefPubMed
31.
go back to reference Galushko M, Golla H, Strupp J, Karbach U, Kaiser C, Ernstmann N, Pfaff H, Ostgathe C, Voltz R (2014) Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: a qualitative study. J Palliat Med 17:274–281CrossRefPubMedPubMedCentral Galushko M, Golla H, Strupp J, Karbach U, Kaiser C, Ernstmann N, Pfaff H, Ostgathe C, Voltz R (2014) Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: a qualitative study. J Palliat Med 17:274–281CrossRefPubMedPubMedCentral
36.
go back to reference Pfleger CCH, Flachs EM, Koch-Henricksen N (2010) Social consequences of multiple sclerosis (1): early pension and temporary unemployment- a historical prospective cohort study. Mult Scler 16:121–126CrossRefPubMed Pfleger CCH, Flachs EM, Koch-Henricksen N (2010) Social consequences of multiple sclerosis (1): early pension and temporary unemployment- a historical prospective cohort study. Mult Scler 16:121–126CrossRefPubMed
38.
go back to reference Pugliatti M, Rosati G, Carton H, Riise T, Drulovic J, Vécsei L, Milanov I (2006) The epidemiology of multiple sclerosis in Europe. Eur J Neurol 13(7):700–722 ReviewCrossRefPubMed Pugliatti M, Rosati G, Carton H, Riise T, Drulovic J, Vécsei L, Milanov I (2006) The epidemiology of multiple sclerosis in Europe. Eur J Neurol 13(7):700–722 ReviewCrossRefPubMed
Metadata
Title
Disparity between perceived needs and service provision: a cross-sectional study of Italians with multiple sclerosis
Authors
Michela Ponzio
Andrea Tacchino
Concetta Vaccaro
Giampaolo Brichetto
Mario Alberto Battaglia
Michele Messmer Uccelli
Publication date
01-06-2019
Publisher
Springer International Publishing
Published in
Neurological Sciences / Issue 6/2019
Print ISSN: 1590-1874
Electronic ISSN: 1590-3478
DOI
https://doi.org/10.1007/s10072-019-03780-z

Other articles of this Issue 6/2019

Neurological Sciences 6/2019 Go to the issue