Although experts recommend that people with multiple sclerosis (MS) should begin treatment with disease-modifying agents (DMAs) as soon as possible after diagnosis and continue indefinitely, many do not use these agents or discontinue them prematurely. Since DMAs reduce relapse rates and slow disease progression, and since even benign relapses and course can lead to axonal damage and permanent neurologic impairment, it is important that all appropriate candidates have access to treatment. We used a population-based sample of people with MS to determine rates, predictors, and reasons for use, non-use, and discontinuation of DMAs.
Methods
We collected data from 2156 people with MS on their use of and experience with DMAs. We used chi-squared tests to compare current, past, and never users of any DMA and ever users of individual DMAs, and logistic regression to identify predictors of use.
Results
One-half of the participants were using a DMA at the time of the interview; 12.2% had used previously, but stopped. Reasons for never using and reasons for stopping were at odds with expert recommendations. Characterization of users, and of their experiences by type of DMA, was consistent with current knowledge of these agents. Seeing a neurologist for usual MS care was an important factor in starting and persisting with DMA therapy.
Conclusions
Dissemination of expert opinion about, and management strategies for, use of DMAs to non-neurologic professionals and patients and their families might help more people who are appropriate candidates for DMA therapy to start and continue treatment.
2 Richert ND Zierak MC Bash CN Lewis BK McFarland HF Frank JA . MRI and clinical activity in MS patients after terminating treatment with interferon beta-1b.Mult Scler2000; 6: 86 – 90 .
3.
3 Durelli L Bongioanni MR Ferrero B Ferri R Imperiale D Bradac GB . Interferon alpha-2a treatment of relapsing–remitting multiple sclerosis: disease activity resumes after stopping treatment.Neurology1996; 47: 123 – 129 .
4.
4 Myhr KM Riise T Lilleas FEG Beiske TG Celius EG Edland A . Interferon-alpha 2a reduces MRI disease activity in relapsing–remitting multiple sclerosis.Neurology1999; 52: 1049 – 1056 .
5.
5 Goodin DS Frohman EM Garmany GP Halper J Likosky WH Lublin FD . Disease-modifying therapies in multiple sclerosis. Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and the MS Council for Clinical Practice Guidelines.Neurology2002; 58: 169 – 178 .
6.
6 Freedman MS Blumhardt LD Brochet B Comi G Noseworthy JH Sandberg-Wolheim M . and the Paris Workshop Group. International consensus statement on the use of disease-modifying agents in multiple sclerosis.Mult Scler2002; 8: 19 – 23 .
7.
7 Corboy JR Goodin DS Frohman EM . Disease-modifying therapies for multiple sclerosis.Current Treatment Options in Neurology2003, 5: 35 – 54
8.
8 Kappos L . Effect of drugs in secondary disease progression in patients with multiple sclerosis.Mult Scler2004; 10: S46 – S55 .
9.
9 Vollmer TL Hadjimichael O Preiningerova J Ni W Buenconsejo J . Disability and treatment patterns of multiple sclerosis patients in United States: a comparison of veterans and non-veterans.J Rehabil Res Dev2002; 39: 163 – 174 .
10.
10 Lo A Hadjimichael O Vollmer TL . Treatment patterns of multiple sclerosis patients: a comparison of veterans and non-veterans using the NARCOMS registry.Mult Scler2005; 11: 33 – 40 .
11.
12.
12 Mohr DC Likosky W Boudewyn A Marietta P Dwyer P Van Der Wende J . et al. Side effect profile and adherence to in the treatment of multiple sclerosis with interferon beta-1a.Mult Scler1998; 4: 487 – 489 .
13.
13 Rio J Porcel J Tellez N Sanchez-Betancourt A Tintore M Arevalo MJ . Factors related with treatment adherence to interferon β and glatiramer acetate therapy in multiple sclerosis.Mult Scler2005; 11: 306 – 309 .
14.
14 Haas J Firzlaff M . Twenty-four-month comparison of immunomodulatory treatments - a retrospective open label study in 308 RRMS patients treated with beta interferons or glatiramer acetate (Copaxone).Eur J Neurol2005; 12: 425 – 431 .
15.
15 Tremlett HL Oger J . Interrupted therapy: stopping and switching of the beta-interferons prescribed for MS.Neurology2003; 61: 551 – 554 .
16.
16 Mohr DC Goodkin DE Likosky W Gatto N Neilley LK Griffin C . Therapeutic expectations of patients with multiple sclerosis upon initiating interferon beta-1b: relationship to adherence to treatment.Mult Scler1966; 2: 222 – 226 .
17.
17 Sorensen PS Koch-Henriksen N Ravnborg M Frederiksen JL Jensen K Heltberg A . on behalf of the Danish Multiple Sclerosis Study Group. Immunomodulatory treatment of multiple sclerosis in Denmark: a prospective nationwide study.Mult Scler2006; 12: 253 – 264 .
18.
18 Ruggieri RM Settipani N Viviano L Attanasio M Giglia L Almasio P . Long-term interferon-beta treatment for multiple sclerosis.Neurol Sci2003; 24: 361 – 364 .
19.
19 Taus C Taffi R Morelli M Fie A Angeled VA Sgolastra M . Adherence to IFNβ therapy in multiple sclerosis: an Italian clinical setting.Mult Scler2001; 7: S18 – S128 .
20.
20 O’Rourke KET Hutchinson M . Stopping beta-interferon therapy in multiple sclerosis: an analysis of stopping patterns.Mult Scler2005; 11: 46 – 50 .
21.
21 Paolillo A Pozzillia C Giugnia E Tomassinia V Gasperini C Fiorellia M . A 6-year clinical and MRI follow-up study of patients with relapsing–remitting multiple sclerosis treated with Interferon-beta.Eur J Neurol2002; 9: 645 – 655 .
22.
22 Porcel J Rio J Sanchez-Betancourt A Arevalo MJ Tintore M Tellez N . Long-term emotional state of multiple sclerosis patients treated with interferon beta.Mult Scler2006; 12: 802 – 807 .
23.
23 Milanese C La Mantia L Palumbo R Martinelli V Murialdo A Zaffaroni M . the North Italy Multiple Sclerosis Group. A post-marketing study on interferon β 1b and 1a treatment in relapsing–remitting multiple sclerosis: different response in drop-outs and treated patients.J Neurol Neurosurg Psychiatry2003; 74: 1689 – 1692 .
24.
24 Holland N Wiesel P Cavallo P Edwards C Halper J Kalb R . Adherence to disease-modifying therapy in multiple sclerosis: Part I.Rehabil Nurs2001; 26: 172 – 176 .
25.
25 Holland N Wiesel P Cavallo P Edwards C Halper J Kalb R . Adherence to disease-modifying therapy in multiple sclerosis: Part II.Rehabil Nurs2001; 26: 221 – 226 .
26.
26 Bayas A Gold R . Lessons from 10 years of interferon beta-1b (Betaferon/Betaseron) treatment.J Neurol2003; 250: IV3 – IV8 .
27.
27 Bayas A Rieckmann P . Managing the adverse effects of interferon-β therapy in multiple sclerosis.Drug Safety2000; 22: 149 – 159 .
28.
28 Lublin FD Whitaker JN Eidelman BH Miller AE Arnason BG Burks JS . Management of patients receiving interferon beta-1b for multiple sclerosis: report of a consensus conference.Neurology1996; 46: 12 – 18 .
29.
29 Munschauer FE Weinstock-Guttman B . Importance of adherence to and persistence with prescribed treatments in patients with multiple sclerosis. Business briefing: U S Neurology Review2005; 1–5.
30.
30 Langer-Gould A Moses HH Murray TJ . Strategies for managing the side effects of treatments for multiple sclerosis.Neurology2004; 63: S35 – S41 .
31.
31 Daugherty KK Butler JS Mattingly M Ryan M . Factors leading patients to discontinue multiple sclerosis therapies.J Am Pharm Assoc2005; 45: 371 – 375 .
32.
32 Johnson KL Kuehn CM Yorkston KM Kraft GH Klasner E Amtmann D . Patient perspectives on disease-modifying therapy in multiple sclerosis.Int J Mult Scler Care2006; 8: 11 – 18 .
33.
33 Mohr DC Boudewyn AC Likosky W Levine E Goodkin DE . Injectable medication for the treatment of multiple sclerosis: the influence of self-efficacy expectations and injection anxiety on adherence and ability to self-inject.Ann Behav Med2001; 23: 125 – 132 .
34.
34 Feinstein A . Multiple sclerosis, disease-modifying treatments and depression: a critical methodological review.Mult Scler2000; 6: 343 – 348 .
35.
35 Mohr DC Goodkin DE Likosky W Gatto N Baumann KA Rudick RA . Treatment of depression improves adherence to interferon beta-1b therapy for multiple sclerosis.Arch Neurol1997; 54: 531 – 533 .
36.
36 Mohr DC Likosky W Dwyer P Van Der Wende J Boudewyn AC Goodkin DE . Course of depression during the initiation of interferon beta-1a treatment for multiple sclerosis.Arch Neurol1999; 56: 1263 – 1265 .
37.
37 Fraser C Hadjimichael O Vollmer T . Predictors of adherence to glatiramer acetate therapy in individuals with self-reported progressive forms of multiple sclerosis.J Neurosci Nurs2003; 35: 163 – 170 .
38.
38 Fraser C Hadjimichael O Vollmer T . Predictors of adherence to Copaxone therapy in individuals with relapsing–remitting MS.J Neurosci Nurs2001; 33: 231 – 239 .
39.
39 Walther E Hohlfeld R . Side effects of interferon beta therapy and their management.Neurology1999; 53: 1622 – 1627 .
40.
40 Gottberg K Gardulf A Fredrikson S . Interferon-beta treatment for patients with multiple sclerosis: the patients' perceptions of the side-effects.Mult Scler2000; 6: 349 – 354 .
41.
41 Stangel M; Gold R; Gass A; Haas J; Jung S; Elias W; . Current issues in immunomodulatory treatment of multiple sclerosis. A practical approach. J Neurol 2006; 253: I/32–I/36.
42.
42 Minden SL Frankel D Hadden L Perloff J Srinath KP Hoaglin DC . The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics.Mult Scler2006; 12: 24 – 38 .
43.
43 Poser CM Paty DW Scheinberg L McDonald I Davis FA Ebers GC . New diagnostic criteria for multiple sclerosis: guidelines for research protocols.Ann Neurol1983; 13: 227 – 231 .
44.
45.
46.
47.
48.
48 Veit CT Ware JE . The structure of psychological distress and well-being in general populations.J Consult Clin Psychol1983; 51: 730 – 742
49.
49 Hohol MJ Orav EJ Weiner HL . Disease steps in multiple sclerosis: a simple approach to evaluate disease progression.Neurology1995; 45: 251 – 255 .
50.
50 Lublin FD Reingold SC . Defining the course of multiple sclerosis: results of an international survey.Neurology1996; 46: 907 – 911 .
51.
51 Randolph L . Record of physicians’ activities (PPA questionnaire). Physician Characteristics and Distribution in the U.S. Chicago, IL : American Medical Association , 1997.
52.
53.
54.
54 Northrop D . Getting disease-modifying drugs in the U.S.Inside MS2002; 20 (3).
55.
55 Minden SL Frankel D Hadden L Hoaglin DC . Access to health care for people with multiple sclerosis.Mult Scler2007; 13: 547 – 558 .
56.
56 Trapp BD Peterson JP Ransohoff FM Rudick R Mork S . Axonal transection in the lesions of multiple sclerosis.New Engl J Med1998; 338: 278 – 285 .
57.
57 Bjartmar C Trapp BD . Axonal and neuronal degeneration in multiple sclerosis: mechanisms and functional consequences.Curr Opin Neurol2001; 14: 271 – 278 .
58.
58 Heesen C Kasper J Segal J Kopke S Muhlhauser I . Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis.Mult Scler2004; 10: 643 – 650 .
59.
59 Minden SL; Marder WD; Harrold LN; Dor A; . Multiple sclerosis: a statistical portrait. A compendium of data on demographics, disability, and health services utilization in the United States. Report to the National Multiple Sclerosis Society, August 1993.
