Patient-Reported Experience Measures and Outcomes in Multiple Sclerosis

Background: Proposed National Health Service reforms in the UK would require that disease-modifying drugs (DMDs) for multiple sclerosis (MS) show improvements in patient-reported outcomes, and provide evidence of patient satisfaction with the available support services.

Objectives: To establish the impact of DMDs and associated support services on patient-reported experience measures and outcomes (PROMS survey) in MS.

Methods: PROMS is an ongoing, observational, prospective, cohort survey of UK patients newly diagnosed with relapsing MS receiving an injectable DMD (subcutaneous [sc] interferon [IFN] β-1a) or other DMD. Patients were recruited by independent homecare companies, responsible for delivering medications directly to patients with MS in the UK. Online questionnaires are being issued at baseline and every 12 weeks thereafter, up to a maximum of 96 weeks. Patients completed the baseline questionnaire before they received their first injection and have up to 4 weeks to complete each follow-up questionnaire. The study is designed to assess treatment satisfaction with sc IFN β-1a versus other DMDs, health-related quality of life (using generic EQ-5D and MS-specific MS Impact Scale-29), experience of support services, impact on work productivity and activity impairment.

Results: Baseline data are reported in this interim analysis (n=168). The majority of participants were female (75%), white (94%), had a mean age of 38 years and in employment. At baseline, the EQ-5D score was 73.21 in the whole population, equating to a utility of 0.71 (no significant difference between sc IFN β-1a and ‘other DMD’ groups). There was no significant difference in work-related impairment between sc IFN β-1a and ‘other DMD’ patients; at baseline, 14.6% reported time missed from work due to health during the last 7 days. ‘Moderate difficulties’ with everyday activities were experienced by 9–21% of patients. Generally, patients rated their MS nurses as very good in terms of personal manner, listening and practical skills. As expected, there were no significant differences between the sc IFN β-1a and ‘other DMD’ groups across any of the questionnaires.

Conclusions: This interim report provides an initial overview of patients participating in the MS PROMS survey and their baseline responses prior to starting DMD therapy. As expected, there were no significant differences in baseline characteristics between patients in the sc IFN β-1a group and 'other DMD' group.