Unmet needs of multiple sclerosis patients in the community

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: Community services; Multiple sclerosis; Needs assessment questionnaire; Unmet needs.