Highlights
- •This study is community-based, which may reflect patients׳ unmet needs more accurately than a purely hospital-based study.
- •Unmet needs in >50% suggests that non-pharmacological needs are suboptimally addressed for many MS patients.
- •Physiotherapy offers significant benefits in MS, but is the most frequently reported unmet need.
- •Results highlight need for increased fund allocation, especially for development of multidisciplinary community supports.
- •Identifying unmet needs may inform more equitable health service planning, especially for the identified high-risk group.
Abstract
Background
There is no evidence that disease modifying therapies (DMTs) are beneficial in progressive
(non-relapsing) MS. However, these patients may benefit from multidiscipliniary interventions,
and require financial and community support. Non-pharmacological needs of MS patients
may be overlooked during fund allocation, and identification of unmet needs is important
to optimise care and inform governmental resource distribution.
Aim
To identify unmet needs of MS patients in 3 areas during an Irish epidemiology study.Patients
and methods: Observational study in 3 regions in Ireland: South Dublin SCD (an urban
area), Donegal DGL and Wexford WEX (rural counties).A validated Needs Assessment Questionnaire
(NAQ) was completed by MS patients at research clinics, or by telephone if unable
to attend.
Results
We identified 632 patients with multiple sclerosis: 23% SCD (urban), 30.8% WEX, and
46.2% DGL.MS subtype was relapsing remitting (RR) in 51.1%, secondary progressive
(SP) in 39.7%, and primary progressive (PP) in 9.2%. EDSS was </=6 in 86% and >6.5
in 14%. NAQ was completed by 325 (49.9%).Group A: 155 (47.7%) reported no unmet needs
relating to MS.Group B: 170 (52.3%) reported unmet needs relating to MS,including
all in a group continuing to use disease-modifying therapy without benefit (EDSS>6.5).Number
of unmet needs per patient in group B: 1 need 27%, ≥2 needs 73%, ≥5 24%.Unmet needs
overall correlated with EDSS >6.5 (p<0.001),MS subtype: RR 36.4%/SP 69.8%/PP 59.5% (p<0001),increased age (p 0.003) and MS duration (p 0.003). Multivariate analysis: presence
of unmet needs related to higher EDSS (p<0.001), rural residence (p<0.05), SPMS (p<0.05).Financial unmet needs frequency differed by county: DGL 23.9%, WEX 17%, SCD
10.4% (p 0.045) and marital status: 24% single, 13.5% married (p 0.03).Multivariate analysis: related to rural residence (p<0.05), being single (p<0.05).Occupational therapy (OT) unmet needs frequency differed by subtype:RR 6%/SP
24.5%/ PP 19% (p 0.001), MS duration: 19.7 v 14.8y (p 0.003)and increasing age: 52.5 v 45.8y (p 0.0006).Multivariate analysis: rural, older age, higher EDSS (p<0.05).Physiotherapy unmet needs frequency differed by subtype: RR 17.2%/SP 43.4%/PP
31.7% (p<0.001), MS duration (p<0.001), and age (p 0.002).Multivariate analysis: related to higher EDSS (p<0.001).Employment unmet needs frequency differed by gender:male 22.9%, female 12.8%
(p 0.02).Social unmet needs frequency differed by subtype: RR 12%/SP 39.2%/PP 32.5%,
MS duration and age (p 0.001): multivariate analysis: SPMS (p<0.001).
Discussion
More than 50% reported unmet needs relating to MS: suggesting non-pharmacological
needs are not optimally addressed, particularly in older, single, rural residents,
with greater EDSS and progressive non-relapsing MS. Physiotherapy offers significant
benefits, but is the most frequently reported unmet need.These findings highlight
the need for increased fund allocation, especially for development of community supports
and multidisciplinary/ social services.Identifying unmet needs may help inform health
service planning, and emphasises particular need for improved resources in a high-risk
group of MS patients.
Keywords
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Article info
Publication history
Published online: February 03, 2015
Accepted:
January 5,
2015
Received in revised form:
December 7,
2014
Received:
July 8,
2014
Identification
Copyright
© 2015 Elsevier B.V. Published by Elsevier Inc. All rights reserved.
