Adherence to disease-modifying treatments in patients with multiple sclerosis in Spain

Figures & data

Table 1 Questionnaire: evaluated variables

1. Sociodemographic and pathology data	Response
F1. Spanish province
F2. Birth year
F3. Gender
F4. MS type
F5. How long have you been receiving medication to treat your MS?
F5b. In what year did you start taking medication to treat MS?
F6. How many treatments have you received since you started taking medication for MS?
F7. What is the medication you are currently receiving for MS?
F8. If F6 response ≥1. What was the medication you received for MS?
F9. If F6 response >2. Before this, do you remember what was the medication you received for MS?
F10. Do you belong to any patients association?
F10b. Which?
2. MS information	Response (scale 1–10)
P1. To what extent do you consider medication for MS important? Rate with a grade from 1 to 10, where 1 is “Not at all important” and 10 “Very important”
P2. To what extent do you consider it important to correctly follow the indications about taking your medication for MS? Rate with a grade from 1 to 10, where 1 is “Not at all important” and 10 “Very important”
P3. To what extent do you think that the INFORMATION that you have received from health professionals about the treatment of MS has been sufficiently CLEAR enough? Rate with a grade from 1 to 10, where 1 is “Not at all clear” and 10 “Very clear”
P4. Rate with a grade from 1 to 10, where 1 is “I do not care about anything” and 10 “I’m very worried” To what extent do you worry about the following aspects of your medication for MS?   • Possible mild side effects   • Possible serious side effects   • (If >45, do not ask) the possible interference with pregnancy   • The way to take/administer the medication   • The slowness in its effect/benefit   • The impact of medication on your daily life
3. Current MS treatment (adherence to current treatment)	Response
P5. What is the name of the medication you are currently receiving for MS?
P6. How long have you been taking your current medication?
P7. (Morisky–Green test) Next, focus on the last 6 months and on the medication you are currently receiving for MS.   • 1= Do you ever forget to take medications to treat your illness?   • 2= Do you take the medications at the indicated times?   • 3= When you are well, do you stop taking the medication?   • 4= If you ever feel bad, do you stop taking it?
P7b. If response P7_2=2. Why?
P8. If response P7_1=1. Have you forgotten any dose in the last 30 days?
P9. If response P7_1=1. What do you do when you forget a shot of your current medication?   • 1= I do not take it and wait until the next shot   • 2= I take it the moment I remember   • 3= In the next shot, I take two (double the dose)   • Other (specify)
P10. If response P7_1 or P7_3 or P7_4=1. If you forget or stop taking any dose, do you communicate it to your …?   • Doctor   • Nurse   • Hospital pharmacist   • Other (specify)
P11. If response P7_2=2. If you do not take the medication at the indicated times, do you communicate it to your …?   • Doctor   • Nurse   • Hospital pharmacist   • Other (specify)
P12. If responseP7_1=1. Why do you think you forget your medication for MS?
P13. Have you voluntarily stopped taking any dose in the last 30 days?
P14. For what reasons have you voluntarily stopped taking your medication for MS?
P15. To what extent do you feel satisfied with the form of your medication (knowing that the majority of the medication can be oral, injectable, intravenous, and is administered daily, weekly, or monthly)?
P16. If response P15 value is 0-7. Why do you value it in this way?
4. Interruptions to the current MS treatment	Response
P18. Have you interrupted the medication on any occasion in the last 6 months?   • 1= Yes, I am not currently taking it   • 2= Yes, there was a season that I stopped taking it   • 3= No, I have always taken it
P19. If response P18=1 or 2. In the last 6 months, how many times have you interrupted the current medication?
P20. If response P18=1 or 2. For what reasons did you interrupt the medication?   • 1= I went traveling   • 2= I was sick   • 3= I had to take another medication   • 4= It made me feel bad (side effects)   • 5= I wanted to get pregnant/I was pregnant   • 6= I did not want to inject myself   • Other (specify)
P21. If response P18=1 or 2. For how many days did you interrupt treatment the last time you interrupted?
P22. If response P18=1 or 2. Who made the decision?   • 1= Own decision   • 2= Doctor’s decision   • 3= Another person (who:)
P23. If response P22=1. You reported this interruption to a …   • Doctor   • Hospital pharmacist   • Nurse
5. Adherence level to previous treatment	Response
P24. Before the current treatment, did you receive another treatment for MS?   • 1= Yes   • 2= No
P25. What medication did you receive before the current one?
P26. How long did you take it?
P27. Who decided to change to current medication?   • 1= Doctor   • 2= Patient   • Other (specify)
P27b. If response P27=1. Why did your doctor change you to the current medication? P27c. If response P27=2. Why did you decide to change to the current medication?   • 1= I wanted to get pregnant/I was pregnant   • 2= It was very uncomfortable to take (many pills, I do not like punctures …)   • 3= I never remembered to take it   • 4= Because it had no effect   • 5= Because it made me feel bad (side effects)   • Other (specify)
P28. With what do you think you are more adherent?   • 1= Current   • 2= Previous
P29. Why?   • 1= Administration frequency   • 2= Administration route   • Other (specify)
6. Patient attitudinal profile	Response
P30. There are 3 patient profiles. You may identify with some aspects of the three, but I need you to tell me, with which of the three do you feel more identified with today in relation to MS disease and its treatments? If you had to choose only one?   • 1= I feel that I can continue living the life that I want and although sometimes I have to adapt to this situation, I can find a way to do it since I am a practical person. My attitude toward illness and treatment is proactive, realistic, and open to new options   • 2= Sometimes I feel that neither the doctors nor my family understand what I’m going through. As far as my illness is concerned, I feel alone and not very optimistic in the evolution of the disease and the help that the treatments can provide me   • 3= I have learned to live day by day since nobody knows what can happen tomorrow. Adaptability and pragmatism are my main values. “Carpe diem” is a philosophy of life. I try to disconnect from the disease and the treatment by showing an open attitude, without worrying too much, and adapting to things as they come
7. Patient and pathology characteristics	Response
P31. In what year were you diagnosed with MS?
P32. Have you suffered any exacerbation in the last year?   • 1= Yes   • 2= No
P33. If response P32=1. How many exacerbations have you had in the last year?
P34. How many months have passed since you had the last exacerbation?
P35. How many months have passed between the last exacerbation and the previous one?
P36. In the last year, how many hospital admissions do you remember were caused by your MS?
P37. Do you have any impairment/disability caused by MS?   • 1= Yes → What?_____________   • 2= No
P38. Would you mind telling me what your marital status is?   • 1= Single   • 2= Married   • 3= Divorced   • Widow(er)
P39. Do you need your family’s help or outside help for your day-to-day life?   • 1= Yes → What?_____________   • 2= No
P40. What other health problems do you have besides MS?   • 1= Hypertension   • 2= High cholesterol   • 3= Diabetes mellitus   • 4= Renal problems (acute/chronic renal failure, lithiasis …)   • 5= Cardiac problems (acute myocardial infarction, heart failure …)   • 6= Respiratory problems (asthma, chronic bronchitis, lung edema …)   • 7= Urologic problems   • Other (specify)   • No more
P41. Should you take other medications to control these problems?   • 1= Hypertension   • 2= High cholesterol   • 4= Renal problems   • 5= Cardiac problems   • 6= Respiratory problems   • 7= Urologic problems   • Other
P42. From a scale of 1 to 10, to what extent do you comply with what is indicated by the doctor when taking these other medications?
P43. What is your employment status?   • 1= Employed   • 2= Unemployed

Abbreviation: MS, multiple sclerosis.

Table 2 Sociodemographic characteristics of MS patients

Variables (n=157)	n	%
Localization in Spain
North	28	18
North East	34	22
Center	35	22
East	28	18
South	32	20
Age (years)
<40	60	38
40–49	52	33
>50	45	29
Gender
Male	44	28
Female	113	72
Marital status
Married	90	57
Single	52	33
Divorced	10	6
Widow(er)	4	3
Nk/Na	1	1
Employment status
Employed	56	36
Unemployed	101	64
Localization
Urban area	99	63
Rural area	58	37
Patients associations
Yes	74	47
No	83	53

Abbreviations: MS, multiple sclerosis; Nk/Na, not known/not available.

Table 3 Adherence according to administration route

	Oral (%) (n=59)	Injectable (%)(n=98)		P-value
		IV (%) (n=25)	SC (%) (n=73)
Compliance	63	77		0.064
		100	68	0.003
Forgetfulness	36	22		0.109
		0	30	0.005
Patient takes the medication at indicated hours	95	96		1.000
		100	94	0.542
Patient does not take the medication if feeling well	0	1		1.000
		0	1	1.000
Patient does not take the medication if feeling bad	3	1		0.654
		0	1	1.000

Notes: Bold values indicate statistical significance.

Abbreviations: IV, intravenous; SC, subcutaneous.

Table 4 Adherence to treatment in MS patients

N=157	Compliance (%)(n=112)	Non-compliance (%) (n=45)	P-value
Age (years)
<40	34	49	0.118
40–49	34	31	0.879
≥50	32	20	0.185
Mean	45.2	40.4	0.013
Gender
Male	27	31	0.727
Female	73	69	0.727
MS type
RRMS	72	80	0.426
SPMS	21	13	0.410
PPMS	7	7	1.000
Number of treatments
Mean	2.0	1.6	0.046
Patients associations
Yes	46	49	0.918
No	54	51	0.918
Diagnosis (years)
<5	19	38	0.021
5–10	36	18	0.035
>10	45	44	1.000
Mean	10.7	8.9	0.152
Exacerbation incidence focused on the last year
Exacerbations	30	33	0.862
No exacerbations	70	67	0.862
Exacerbations (mean)	1.6	1.3	0.474
Exacerbation incidence
Months since last exacerbation (mean)	32.9	27.0	0.329
Affectation/disability due to MS
With affectation/disability	72	71	1.000
Without affectation/disability	28	27	1.000
Nk/Na	0	2	1.000
Cognitive affectation due to MS
Cognitive affectation	3	19	0.002
Memory loss	1	16	0.002
Marital status
Married	63	42	0.025
Not married	37	58	0.025
Issues associated with medication
Medication importance (mean)	9.1	9.2	0.713
Importance of following indications (mean)	9.5	9.4	0.569
Clear information (mean)	8.9	8.4	0.028
Current treatment
Current oral treatment	33	49	0.940
Current injectable treatment	67	51	0.940
Current medication, months (mean)	43.7	56.7	0.100
Satisfaction with the current administration
Satisfaction with oral treatment (mean)	9.1	8.0	0.016
Satisfaction with injectable treatment (mean)	7.9	6.5	0.011
Patients’ profile according to their attitude toward the disease
Pragmatic	49	60	0.796
Proactive and realistic	35	31	0.359
Unoptimistic	16	9	0.246

Note: Bold values indicate statistical significance.

Abbreviations: MS, multiple sclerosis; Nk/Na, not known/not available; PPMS, primary progressive multiple sclerosis; RRMS, relapsing-remitting multiple sclerosis; SPMS, secondary progressive multiple sclerosis.