Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective

Figures & data

Table 1. Instruments and domains of the variables collected in this study.

Instruments	Domains
Standardized face-to-face interviews	Age (years) Sex (male/female) Living situation (living alone/co-habiting) Work status (full or part time/not working) Immunomodulatory treatment Disease duration (years since diagnosis) MS type (relapsing MS/progressive MS)
Expanded Disability Status Scale	Disease severity (mild MS: EDSS 0–3.5, moderate MS: EDSS 4–6.5 and severe MS: EDSS 7–9.5).
Katz ADL Index Extended	Dependency in personal and instrumental activities in daily living.
Frenchay Activities Index	Participation in social/lifestyle activities

EDSS: Expanded Disability Status Scale; MS: multiple sclerosis.

Figure 1. Study flowchart.

Table 2. Baseline data for participants with mild, moderate and severe MS completing the study and those lost to the 10-year follow-up.

	Completing the study (n = 264)			Lost to follow-up (n = 112)
	Mild MS (n = 142)	Moderate MS (n = 84)	Severe MS (n = 38)	Mild MS (n = 35)	Moderate MS (n = 33)	Severe MS (n = 44)
Age (years), mean (SD)	42.8 (11.1)	50.3 (9.7)	54.3 (10.7)	43.0 (13.4)	56.6 (10.8)	56.4 (13.0)
Female sex, n (%)	100 (66)	54 (64)	25 (66)	25 (71)	24 (73)	33 (75)
Living alone, n (%)	33 (23)	25 (30)	11 (29)	12 (34)	9 (27)	25 (57)
Working, n (%)	109 (77)	39 (46)	4 (10)	22 (63)	5 (15)	2 (5)
MS duration (years), median (IQR)	9.0 (12.3)	16.0 (12.8)	22.0 (15.3)	8.0 (9.0)	20.0 (16.0)	24 (16.8)
EDSS-score, median (IQR)	1.5 (1.5)	5.5 (1.5)	8.0 (0.5)	2.0 (1.5)	6.0 (1.5)	8.0 (0.5)
Immunomodulatory treatment (%)	98 (69)	57 (68)	22 (58)	25 (71)	20 (61)	24 (54)
Progressive MS, n (%)	16 (11)	63 (75)	36 (95)	5 (14)	25 (76)	41 (93)

EDSS: Expanded Disability Status Scale; IQR: interquartile range; MS: multiple sclerosis; SD: standard deviation.

Figure 2. Percentages of people in the (A) mild, (B) moderate and (C) severe MS groups demonstrating dependency in personal and instrumental activities of daily living at baseline and the 10-year follow-up. Each activity was scored as being “dependent” (i.e. requiring assistance) or “independent” (i.e. able to perform the activity without assistance) according to the Katz ADL Index Extended. Data presents the percentages of people with MS who reported dependency. *Significant difference (p ≤ 0.01) between baseline and the 10-year follow-up.

Table 3. Proportions (percentages) in the mild, moderate and severe MS group demonstrating activity limitations (i.e. dependency in ADL) and participation restrictions (i.e. restrictions in social/lifestyle activities) at baseline and 10-year follow-up.

	Mild MS (n = 142)		Moderate MS (n = 84)		Severe MS (n = 38)
	Baseline	10 year	Baseline	10 year	Baseline	10 year
Personal ADL	5 (3)	29 (20)*	10 (12)	41 (49)*	26 (68)	36 (95)*
Instrumental ADL	23 (16)	60 (42)*	59 (70)	74 (88)*	38 (100)	38 (100)
Social/lifestyle activities	3 (2)	12 (8)	14 (17)	37 (44)*	27 (71)	32 (84)

ADL: Activities of daily living; MS: multiple sclerosis.

*Significant difference (p ≤ 0.01) between baseline and the 10-year follow-up.

Figure 3. Percentages of people in the (A) mild, (B) moderate and (C) severe MS groups demonstrating participation restrictions in domestic, leisure/work and outdoor activities at baseline and the 10-year follow-up. Each activity was scored between 0 and 3 (0 = “never” and 3 = “at least weekly”) according to the Frenchay Activities Index and people with MS who reported 0 or 1 were classified as being restricted in that activity. Data presents the percentages of people with MS who reported restricted participation. *Significant difference (p ≤ 0.01) between baseline and the 10-year follow-up.