Abstract

The PROMs (Patient–Reported Outcome Measures) Survey is an ongoing, observational, prospective, cohort survey of UK patients newly diagnosed with relapsing Multiple Sclerosis (MS) receiving an injectable disease–modifying drug (DMD) (subcutaneous [sc] interferon [IFN] beta–1a or ‘other DMD’). The survey was designed to establish the impact of DMDs and associated support services on patient–reported experience measures and outcomes in MS, in response to proposed National Health Service (NHS) reforms for the reimbursement of DMDs for MS. Independent homecare companies responsible for delivering prescription medications directly to patients with MS in the UK administered online questionnaires to patients at baseline. Further questionnaires will be distributed every 12 weeks thereafter, up to a maximum of 96 weeks. The baseline questionnaire was completed before the patients received their first injection. Patients have up to 4 weeks to complete each follow–up questionnaire. This interim report provides an initial overview of patients participating in the MS PROMs Survey and their baseline responses prior to starting DMD therapy, including health–related quality of life (using generic EQ–5D and MS Impact Scale [MSIS]–29 questionnaires), work productivity and activity impairment (WPAI) index, and experience of support services. It was anticipated that there would be no differences between the patient groups at baseline. A total of 168 patients participated: 62 receiving sc IFN beta–1a and 106 receiving ‘other DMDs’. The majority of participants were female (75%), white/Caucasian (94%), had a mean age of 38 years and were in paid employment (77%). The mean utility for patients, based on EQ–5D scores, was 0.71 (in which 1=perfect health). Mean baseline MSIS–29 physical score was 28.5, indicating that patients were at the lower end of the disability scale, although the psychological score was slightly higher (36.1). There was no significant difference between the sc IFN beta–1a and ‘other DMD’ groups for either of these measures. There was also no significant difference in work–related impairment; at baseline, in total, 14.6% reported time missed from work, 26.4% reported impairment while working, and 39.0% reported activity impairment, due to health during the previous 7 days. EQ–5D scores at baseline showed that 20.1% of patients were experiencing moderate problems doing their usual activities, 20.8% had moderate problems walking, 20.8% were experiencing moderate levels of pain or discomfort and 14.5% were moderately anxious or depressed. Most patients (80%) said that they do have access to NHS support services and the preferred methods of accessing these services (in order of preference) were face–to–face, by telephone and on the internet. As expected, there were no significant differences in baseline characteristics between patients in the sc IFN beta–1a group and ‘other DMD’ group across any of the questionnaires. These data provide an important snapshot of the newly diagnosed MS population in the UK. Ongoing data will be published as they become available.