Treatment experience, burden, and unmet needs (TRIBUNE) in Multiple Sclerosis study: the costs and utilities of MS patients in The Netherlands

Figures & data

Table 1. Patients' demographic characteristics, by disease severity.

	EDSS 0–3 (n = 122)		EDSS 4–6.5 (n = 112)		EDSS 7–9 (n = 29)
Gender: female, n (%)	99	(81%)	72	(64%)	20	(69%)
Age, Mean age (SD)	41.55	(10.03)	48.48	(9.99)	49.72	(11.23)
Living situation, n (%)
Alone	18	(15%)	12	(11%)	3	(10%)
With family, spouse/partner	103	(84%)	98	(88%)	25	(86%)
Nursing home	0	(0%)	0	(0%)	0	(0%)
No information available	1	(1%)	2	(2%)	1	(3%)
Education level, n (%)
Secondary school	22	(18%)	21	(19%)	3	(10%)
High school degree	34	(28%)	23	(21%)	13	(45%)
Professional diploma	58	(48%)	58	(52%)	11	(38%)
University degree	6	(5%)	7	(6%)	1	(3%)
Employment situation, n (%)
Employed	64	(52%)	26	(23%)	0	(0%)
Self-employed	8	(7%)	2	(2%)	0	(0%)
Home maker	15	(12%)	13	(12%)	3	(10%)
Retired due to age	0	(0%)	9	(8%)	1	(3%)
Retired due to MS	28	(23%)	58	(52%)	24	(83%)
Student	3	(2%)	1	(1%)	0	(0%)
Unemployed	4	(3%)	2	(2%)	0	(0%)
No information available	0	(0.0%)	1	(1%)	1	(3%)
Number of study participants with informal caregiver, n (%)	40	(33%)	75	(67%)	25	(86%)

EDSS, Expanded Disability Status Scale; MS, multiple sclerosis; SD, standard deviation.

Table 2. Patients' disease characteristics, by disease severity.

	EDSS 0–3 (n = 122)		EDSS 4–6.5 (n = 112)		EDSS 7–9 (n = 29)
Mean age at diagnosis (SD)	35.47	(9.36)	38.91	(9.71)	34.72	(8.35)
Mean age at symptom onset (SD)	31.09	(8.59)	33.01	(10.63)	29.55	(7.84)
MS type, n (%)
Relapsing–remitting MS	86	(70%)	34	(30%)	2	(7%)
Secondary progressive MS	8	(7%)	37	(33%)	16	(55%)
Primary progressive MS	1	(1%)	26	(23%)	10	(34%)
Don’t know	27	(22%)	15	(13%)	1	(3%)
Comorbidities, n (%)
Osteoporosis	4	(3%)	15	(13%)	4	(14%)
Depression/Anxiety	29	(24%)	30	(27%)	4	(14%)
Urinary tract infections/Incontinence	30	(25%)	56	(50%)	21	(72%)
Sleep problems	39	(32%)	46	(41%)	15	(52%)
Arthritis	8	(7%)	7	(6%)	4	(14%)
Hypertension	11	(9%)	13	(12%)	5	(17%)
Cognitive problems	73	(60%)	80	(71%)	16	(55%)
Mean EDSS score (SD)	1.85	(1.12)	5.31	(0.89)	7.41	(0.50)

EDSS, Expanded Disability Status Scale; MS, multiple sclerosis; SD, standard deviation.

Figure 1. Hours of professional and informal care and sick leave for RRMS patients with EDSS score ≤5 (95% CI), by relapse status.

Table 3. Direct medical, non-medical, indirect, and total costs per multiple sclerosis patient per year (Euros 2011), by disease severity.

	EDSS 0–3 (n = 122)			EDSS 4–6.5 (n = 112)			EDSS 7–9 (n = 29)
	Mean	SD	95% CI	Mean	SD	95% CI	Mean	SD	95% CI
Inpatient care	173	851	67–423	973	5637	285–2794	828†	2274	303–2506
Outpatient care	458	812	333–632	895*	1699	672–1300	1763†	4448	786–4910
Consultations	1013	1188	840–1255	1819*	1967	1468–2174	3257†‡	2340	2411–4155
Investigations	141	193	112–176	138	193	109–179	161	227	93–261
MS treatments	8975	7942	7623–10,437	9020	9036	7418–10,699	6557	8540	3862–9859
Other prescribed and OTC medication	513	1688	313–1138	823*	2228	581–1529	1411†‡	1844	981–2803
Total direct medical costs	11,274	8013	9970–12,765	13,668	11,635	11,770–15,963	13,978	11,264	10,017–18,628
Investments/modifications	602	1514	377–925	2045*	3109	1551–2664	4577†‡	3882	3253–6088
Professional care	643	3976	160–1866	3114*	11,914	1650–6803	20,600†‡	29,841	11,987–34,871
Informal care	3706	13,763	1757–7129	9808*	17,276	7121–13,166	27,127†	38,431	16,378–42,872
Total direct non-medical costs	4951	14,795	2870–8288	14,967*	23,421	11,143–19,885	52,303†‡	60,498	35,277–79,858
Sick leave	5233	13,745	3061–8349	1029*	6577	189–3017	0†	0	0–0
Retirement due to MS	9481	17,443	6772–13,544	21,393*	20,735	18,073–25,450	34,188†‡	15,881	28,490–39,886
Total indirect costs	14,714	19,828	11,131–18,547	22,421*	20,707	18,887–26,134	34,188†‡	15,881	28,490–39,886
Total costs	30,938	28,773	26,144–36,354	51,056*	38,812	44,242–58,350	100,469†‡	63,821	82,754–128,777

EDSS, Expanded Disability Status Scale; MS, multiple sclerosis; n.a., not applicable; OTC, over-the-counter; SD, standard deviation.

*Difference is statistically significant compared to the mild sub-group of patients (p-value <0.05).

†Difference is statistically significant compared to the mild sub-group of patients (p-value <0.05).

‡Difference is statistically significant compared to the moderate sub-group of patients (p-value <0.05).

Figure 2. Costs for RRMS patients with EDSS score ≤5 (95% CI), by relapse severity.

Figure 3. EQ-5D results (95% CI), by disease severity.

Figure 4. Fatigue and ADL (95% CI), by disease severity. *The Barthel Index score is decreasing with increasing disability. **The MFIS score is increasing with increasing disability.