There were 271 participants. Of these, 223 had HSCT; 45 participants are not included in the analysis.
Of the participants that received HSCT, 73.5% were female. Most were in the age range 35–54 years (Table 1). The majority of participants had a household income greater than US$50,000 (Table 2). The greatest number of participants came from Australia and the United States (Fig. 1).
Table 1
Percentage of respondents in relation to age
Age
|
Respondents (%)
|
18–24
|
1.34
|
25–34
|
4.03
|
35–44
|
31.84
|
45–54
|
39.91
|
55–64
|
19.20
|
65 & over
|
3.59
|
Table 2
Percentage of respondents in relation to total household income
Total household income (US$)
|
Respondents (%)
|
< $18,000
|
3.14
|
$18,000-–$29,999
|
8.07
|
$30,000–$49,999
|
7.62
|
$50,000–74,999
|
17.94
|
$75,000–$99,999
|
22.87
|
$100,000–$149,999
|
17.49
|
> $150,000
|
20.63
|
94.6% of participants were suffering from MS. 2.7% had Chronic Inflammatory Demyelinating Polyneuropathy. There were two participants with Stiff Person’s Syndrome, and one person for each of clinically isolated MS, scleroderma, Polyneuropathy, Organomegaly, Endocrinopathy, Myeloma Protein Syndrome (POEMS) and neuromyelitis optica (NMO).
The preponderance of participants had their treatment in Russia (38.7%) (Fig. 2). 78.1% of participants had non-myeloablative treatment, the others myeloablative.
Treatment costs ranged from less than US$15,000 to greater than US$150,000, with nearly half of the participants spending between US$50,000 to US$74,999 (Table 3 ). Most participants waited from 3 to > 12 months before treatment (Table 4).
Table 3
Percentage of respondents in relation to treatment cost
Total household income (US$)
|
Respondents (%)
|
< $15,000
|
7.65
|
$15,000-–$29,999
|
0.90
|
$30,000–$49,999
|
10.36
|
$50,000–74,999
|
45.50
|
$75,000–$99,999
|
17.12
|
$100,000–$149,999
|
12.16
|
> $150,000
|
6.31
|
Table 4
Percentage of respondents in relation to waiting times prior to treatment
Waiting time (months)
|
Respondents (%)
|
< 1
|
4.50
|
1–2
|
6.31
|
3–5
|
31.53
|
6–8
|
21.17
|
9–11
|
12.61
|
> 12
|
23.86
|
54.5% of neurologists were not supportive of their patient receiving HSCT treatment. Post-treatment, 65.5% of neurologists continued patient care. In addition, 65.0% of participants continued to see the same neurologist before and after stem cell treatment.
83.33% of participants were satisfied with the level of post-treatment care. Participants saw five types of medical specialists following HSCT: neurologist, hematologist, general practitioner, rheumatologist and physiotherapist. On average, additional costs amounted to approximately US$13,800, including travel and accommodation for family members, meal costs, etc.
Of the 223 participants that have had HSCT, 85.5% either agreed or strongly agreed that the treatment has been successful in managing symptoms of their disease. Participants reported that their symptoms had improved. This occurred early following the operation, i.e. immediately, to weeks, months and a few years. Some participants reported no change. In addition, 95.4% of participants would recommend the treatment to other people.
The EDSS was recorded by the participants neurologist before and after stem cell transplantation. The scores before and after treatment are tabulated in Supplementary Table 2, along with the differences. The average reduction in EDSS after treatment was 1.2 (95% CI: 0.97–1.41) among 197 participants (p < 0.0001; t value: 10.7, df 196) suggesting a significant difference (see Fig. 3). There were 17 participants whose EDSS scores were higher after transplantation, with 50 participants whose scores remained unchanged – 130 participants showed an increased score (see Fig. 3).