Burden of illness in multiple sclerosis (DEFENSE) study: the costs and quality-of-life of Finnish patients with multiple sclerosis

Figures & data

Figure 1. Distribution of PwMS by gender across EDSS categories.

Table 1. Sample demographics and disease characteristics (n = 553).

Gender, n (%)
Female	435 (78.7)
Age
Mean (SD)	53.8 (11.4)
Range	21–88
Aged <63, n (%)	421 (76.1)
Current employment situation, n (%)
Employed or self-employed	195 (35.3)
Student	2 (0.4)
Unemployed	23 (4.16)
On disability pension (any reason)	223 (40.3)
On retirement pension	110 (19.9)
Diagnosis
Mean (SD) age at diagnosis	37.4 (10.1)
Type of MS, n (%)
Relapsing remitting	244 (44.1)
Primary progressive	94 (17.0)
Secondary progressive	160 (28.9)
Does not know	55 (10.0)
Disease severity
Mean EDSS score (SD)	4.0 (2.45)
PwMS with relapses during past 12 months, n (%)	119 (21.5)

Figure 2. Total mean annual cost per PwMS.

Table 2. Use of medical resources and estimated direct healthcare costs.

	Proportion using resources in recall period (%)	Quantity used in recall period per user	Annual cost per user (€)		Estimated annual cost per PwMS (€)
			Mean	SD	Mean	SD
Total direct healthcare costs	94.9	NA	12,502	9970	11,931	10,092
Total inpatient care (days in recall period 12 months)	23.3	17.2	6764	5402	1578	3869
Inpatient care in healthcare center	12.5	11.4	2807	2499	71	585
Hospital ward	7.8	8.6	3796	4128	295	1527
Rehabilitation	18.3	16.8	6634	3415	1212	2949
Total ambulatory care (visits in recall period 3 months)	66.4	NA	4090	3247	2851	3276
Hospital ward	1.8	4.6	4048	6100	73	948
Health care center	9.4	2.3	1046	1061	98	444
Day hospital	32.7	1.7	1596	1091	522	975
General practitioner	6.9	1.4	673	300	46	187
Specialist, e.g. neurologist	16.1	1.2	1147	542	185	474
Neuropsychologist	4.2	1.9	1075	1030	45	297
Nurse	11.9	2.1	618	566	74	279
Nurse home visits	2.4	2.9	5781	6482	136	1297
Psychologist	4.5	4.3	1549	1649	70	471
Physiotherapist	41.2	11.8	2861	2002	1180	1907
Group physiotherapy	13.2	8.5	2006	1172	265	801
Masseur	10.5	3.9	663	481	70	255
Occupational therapist	4.7	3.2	1491	1502	70	449
Optician	3.4	1.0	140	0.00	5	26
Speech therapist	1.6	1.4	726	265	12	97
Total amount of tests (times during recall period 12 months)	19.3	1.3	490	392	95	259
Lumbar puncture	1.4	1.3	1250	707	18	169
MRI	19.0	1.2	404	165	77	174
Total amount of DMTs, other drugs and treatments (days during recall period 1 month)	93.3	NA	7 940	7796	7409	7788
Betainterferon or glatiramer acetate	35.3	NA*	12,444	0.00	4388	5951
Natalizumab or fingolimod	7.4	NA*	24,234	0.00	1797	6355
Antidepressants	21.9	28.3	109	23	24	46
Erectile dysfunction drugs	4.5	3.3	106	62	5	25
Oral steroids for relapses	3.3	1.2	97	32	3	18
Cystofix for urinary incontinence	2.7	26.7	313	0	9	51
Fampridine	1.6	27.2	5736	1916	93	762
Anti-fatique drugs	7.8	22.4	552	274	43	166
Neural pain drugs	17.9	26.1	638	214	114	261
Repeated catheterization for urinary incontinence	14.1	28.6	2160	0	305	753
Insomnia drugs	19.5	21.3	28	15	6	13
Intrathecal baclofen	0.7	30.0	4079	0	30	346
Medical cannabis	1.1	20.5	4327	2948	47	529
Other anti-spasticity drugs (titzanidine, baclofen, clonazepam)	35.1	23.9	301	133	106	164
Drugs for urinary incontinence	19.3	21.9	321	169	62	147
Usual painkillers	57.0	12.6	86	72	49	69
OTC medicines	66.9	NA**	493	420	330	415

*Current use was assumed to apply for a whole year.

**Amount of money consumed during 1 month was asked.

Table 3. Use of investments and services and estimated direct non-medical costs.

	Proportion using resources in recall period (%)	Quantity used in recall period per user	Annual cost per user (€)		Estimated annual cost per PwMS (€)
			Mean	SD	Mean	SD
Total investments	21.2	NA	5329	4730	1128	3074
Minor changes to apartment	10.5	NA	850	0	89	261
Medium changes to apartment	6.5	NA	2850	0	186	704
Large changes to apartment	2.7	NA	10,870	0	295	1767
Changes made to car	3.3	NA	5020	0	163	892
Electric wheelchair	4.9	NA	5000	0	244	1078
Manual wheelchair	5.4	NA	2500	0	136	567
Walking aids	8.9	NA	167	0	15	47
Total professional services (hours per week during recall period 1 month)	32.7	30.5	23,022	32,271	7535	21,366
Home helper visits	6.7	9.5	18,867	39,460	1262	11,127
House service visits	2.0	40.0	41,664	66,818	829	10,714
Personal helper visits	20.3	30.1	18,456	21,401	3738	12,133
Meals on wheels	1.6	NA*	1680	0	27	213
Transportation service	28.6	NA*	5400	0	1543	2442
Total informal care (hours per week during recall period 1 month)	56.4	10.5	10,696	12,009	6035	10,461

*A service with fixed annual cost for users.

Figure 3. Effect of MS on working capacity: proportion (%) of PwMS below age of 63 of all patients in each EDSS category (bars) and proportion (%) of PwMS on disability pension due to MS of those below age of 63 (line).

Figure 4. Distribution of total annual costs across different resources.

Table 4. Costs and health-related quality-of-life per PwMS per year (€2013) by disease severity.

	EDSS
	0	1	2	3	4	5	6	6.5	7	8–9
Mean total costs (€)	10,835	19,289	29,232	40,739	40,343	58,265	58,549	58,632	73,862	109,901
SD	11,673	21,330	26,214	27,008	29,400	40,233	34,774	36,642	45,353	61,729
95% CI	7520–14,282	14,208–24,604	23,611–34,830	32,841–48,615	32,267–47,746	49,473–68,641	49,859–67,114	47,763–68,624	59,875–87,427	90,917–129,943
Mean direct healthcare costs (€)	8802	10,238	11,474	11,451	12,488	12,426	13,077	11,478	12,820	15,884
SD	9694	7550	10,457	8845	9188	12,190	11,064	9094	9047	11,671
95% CI	5922–11,543	8405–12,262	9419–13,706	8751–13,793	10,086–15,035	9545–15,537	10,548–16,185	9000–13,932	10,070–15,593	12,504–19,604
Mean non-medical direct costs (€)	49	830	1684	4502	5736	15,207	18,649	23,538	32,191	68,484
SD	221	2403	4188	5451	5990	19,691	16,716	14,281	21,844	50,036
95% CI	0–122	313–1411	950–2591	2998–6146	4229–7416	10,869–20,264	15,003–22,659	19,665–27,950	25,848–39,304	54,423–84,218
Mean productivity costs (€)	1984	8221	16,075	24,785	22,119	30,632	26,824	23,617	28,852	25,533
SD	8067	17,467	22,226	22,853	25,798	24,460	23,603	25,375	28,759	25,469
95% CI	49–4723	4212–12,591	11,581–20,598	18,304–31,422	14,964–28,511	24,683–36,611	20,826–33,132	16,022–30,116	20,162–37,613	17,671–33,770
Mean EQ-5D utility	0.951	0.878	0.751	0.700	0.686	0.587	0.596	0.483	0.431	0.143
SD	0.094	0.166	0.172	0.169	0.121	0.243	0.208	0.261	0.312	0.204
Mean EQ-5D VAS	90.1	83.4	73.3	69.7	70.1	56.7	55.7	56.1	57.3	47.2
SD	9.1	8.9	12.8	12.8	16.2	16.5	17.0	17.4	18.3	22.8

Table 5. Productivity costs due to sick-leave, reduced income, and early retirement due to MS.

Type of resource	Proportion using resources in recall period (%)	Quantity used in recall period per user	Annual cost per user (€)		Estimated annual cost per PwMS (€)
			Mean	SD	Mean	SD
Total productivity costs	49.9	NA	41,077	18,332	20,501	24,290
Sick leaves (days during recall period 3 months)	4.5	31.4	23,338	27,118	1055	7451
Reduced income	13.4	NA	14,159	6247	1895	5333
Early retirement due to MS	35.8	NA	49,020	4471	17,552	23,674