A cross-sectional survey of patient satisfaction and subjective experiences of treatment with fingolimod

Figures & data

Figure 1 Fingolimod first-dose observation experience and treatment satisfaction survey flow diagram.

Note: (n) denotes the number of questions asked in each section of the survey; *number of questions asked depended on patient response to a leading question.
Abbreviations: TSQM, Treatment Satisfaction Questionnaire for Medication; DMT, disease-modifying therapy; MS, multiple sclerosis; n, number.

Figure 2 Study accrual and attrition.

Note: Percentages represent the number of patients meeting a specific criterion among all patients in the prior level (eg, patients not providing consent: 2025/5,617 = 35.7%; patients providing consent: 3646/5671 = 64.3%). ^aReasons for screen-out include: <18 years old (N = 24); not living in the United States (N = 10); not English-speaking (N = 9); no physician-diagnosed MS (N = 1650); never taken fingolimod (N = 2980). Reasons are not mutually exclusive.
Abbreviations: N, number; MS, multiple sclerosis.

Table 1 Sociodemographic and clinical characteristics

Characteristic	n (%) or mean (SD)
	Current fingolimod users (n = 310)	All respondents (n = 380)
Age (in years)	38.8 (11.8)	39.8 (12.6)
Female gender	163 (52.6%)	211 (55.5%)
Ethnicity
Hispanic or Latino	41 (13.2%)	48 (12.6%)
Race
White	245 (79.0%)	305 (80.3%)
Black or African American	40 (12.9%)	46 (12.1%)
Asian	24 (7.7%)	28 (7.4%)
Native Hawaiian or Pacific Islander	3 (1.0%)	4 (1.1%)
American Indian or Alaska Native	1 (0.3%)	3 (0.8%)
Other	5 (1.6%)	8 (2.1%)
Employment status
Employed, full-time	147 (47.4%)	164 (43.2%)
Employed, part-time	42 (13.6%)	48 (12.6%)
Homemaker	17 (5.5%)	23 (6.1%)
Student	13 (4.2%)	17 (4.5%)
Unemployed	18 (5.8%)	19 (5.0%)
Retired	11 (3.6%)	17 (4.5%)
Disabled	61 (19.7%)	91 (23.9%)
Other	1 (0.3%)	1 (0.3%)
Type of MS diagnosed
Relapsing remitting MS	157 (50.6%)	198 (52.1%)
Clinically isolated syndrome	65 (21.0%)	70 (18.4%)
Secondary progressive MS	56 (18.1%)	71 (18.7%)
Progressive MS without relapses	23 (7.4%)	26 (6.8%)
Unknown	9 (2.9%)	15 (3.9%)
Prior DMT experience (last DMT before fingolimod)
None	87 (28.1%)	107 (28.2%)
Interferon beta-1a (Avonex)	33 (10.6%)	34 (8.9%)
Interferon beta-1a (Rebif)	27 (8.7%)	35 (9.2%)
Interferon beta-1b (Betaseron or Extavia)	60 (19.4%)	74 (19.5%)
Glatiramer acetate (Copaxone)	63 (20.3%)	73 (19.2%)
Natalizumab (Tysabri)	24 (7.7%)	32 (8.4%)
Other	16 (5.9%)	25 (6.6%)
Time since first MS symptom (in years)a	11.4 (11.1)	12.0 (11.3)
Time since MS diagnosis (in years)b	9.4 (10.3)	9.8 (10.3)
Number of lifetime MS relapses, n (%)
0–1	23 (7.4%)	29 (7.6%)
2–3	101 (32.6%)	116 (30.5%)
4–6	83 (26.8%)	96 (25.3%)
7–9	40 (12.9%)	49 (12.9%)
10+	63 (20.3%)	90 (23.7%)
Number of MS relapses in past 6 months	1.5 (1.6)	1.5 (1.8)
Time since last MS relapse (in years)c	3.5 (7.5)	3.3 (7.1)
Patient determined disease steps, n (%)
Normal (0)	76 (24.5%)	85 (22.4%)
Mild disability (1)	69 (22.3%)	81 (21.3%)
Moderate disability (2)	55 (17.7%)	64 (16.8%)
Gait disability (3)	48 (15.5%)	59 (15.5%)
Early cane (4)	28 (9.0%)	41 (10.8%)
Late cane (5)	23 (7.4%)	32 (8.4%)
Bilateral support (6)	4 (1.3%)	8 (2.1%)
Wheelchair/scooter (7)	4 (1.3%)	7 (1.8%)
Bedridden (8)	3 (1.0%)	3 (0.8%)

Notes:

a Time since first MS symptom calculated as (date of survey completion) - (date of first MS symptoms);

b time since MS diagnosis calculated as (date of survey completion) - (date of MS diagnosis).

c Time since last MS relapse calculated as (date of survey completion) - (date of last MS relapse).

Abbreviations: n, number; SD, standard deviation; MS, multiple sclerosis; DMT, disease-modifying therapy.

Table 2 Reasons for starting or switching to fingolimod

Primary reasonsa	n (%), responses
	Treatment-experienced patients switching to fingolimod	Treatment-naïve patients starting fingolimod
Physician recommendation	148 (15.6%)	68 (32.7%)
Convenience of oral medication	146 (15.4%)	24 (11.5%)
Side effects with previous treatment	118 (12.5%)	N/A
Treatment failure with prior medication	104 (11.0%)	N/A
Dislike of injections/infusions	103 (10.9%)	20 (9.6%)
Expect few(er) or tolerable side effects	95 (10.0%)	28 (13.5%)
Expected efficacy of fingolimod	95 (10.0%)	27 (13.0%)
Ability to take medication at home	71 (7.5%)	28 (13.5%)
Expected safety of fingolimod	40 (4.2%)	10 (4.8%)
Cost	18 (1.9%)	2 (1.0%)

Note:

a Participants asked to report all primary reasons for starting/switching; percentages represent proportion of total responses (n = 947 in treatment-experienced patients; n = 208 in treatment-naïve patients).

Abbreviations: n, number; N/A, not applicable.

Figure 3 First dose experience.

Note:^aQuestion refers to difficulty tolerating side effects (“Overall, how difficult was it to tolerate any side effects experienced during your first dose of Gilenya [fingolimod]?”).

Figure 4 TSQM scale scores, overall and by treatment experience.

Abbreviations: TSQM, Treatment Satisfaction Questionnaire for Medication; n, number.

Table S1 Survey questions about first-dose experience

Thinking about your first-dose experience overall, including the time you spent at your doctor’s office when you received your first dose of Gilenya [fingolimod], how manageable was your first-dose experience? □ Not at all □ A little □ Moderately □ Very □ Extremely Thinking about your first-dose experience overall, including the time you spent at your doctor’s office when you received your first dose of Gilenya [fingolimod], how convenient was your first-dose experience? □ Not at all □ A little □ Moderately □ Very □ Extremely Overall, how easy was it to take your first dose of Gilenya [fingolimod]? □ Not at all □ A little □ Moderately □ Very □ Extremely Thinking about how you felt prior to going to your doctor’s office for your first dose, overall, how nervous were you about your first-dose experience? □ Not at all □ A little □ Moderately □ Very □ Extremely Thinking about your experiences during your first-dose observation period at your doctor’s office, overall, how stressful was your first-dose experience? □ Not at all □ A little □ Moderately □ Very □ Extremely Overall, how difficult was it to tolerate any side effects experienced during your first-dose of Gilenya [fingolimod]? □ Not at all □ A little □ Moderately □ Very □ Extremely □ I did not experience any side effects Overall, how satisfied were you with your first-dose experience? □ Not at all □ A little □ Moderately □ Very □ Extremely