From: Disease progression in women with X-linked adrenoleukodystrophy is slow
N | Mean ± SD / median (range) / proportion | |
---|---|---|
Clinical characteristics of the cohort | ||
Follow-up time in years | 34 | 7.8 (6.4–8.7) |
Symptomatic (baseline) | 65 | 37 (57%) |
Symptomatic (follow-up) | 34 | 27 (79%) |
Conversion to symptomatic during follow-up period | 34 | 8 (24%) |
Walking (baseline) - unrestricted | 62 | 40 (65%) |
- restricted | 62 | 14 (23%) |
- with an aid | 62 | 8 (13%) |
Change in walking status during follow-up | 32 | 3 (0.1%) |
Age in years (baseline) | 65 | 49.2 ± 14.2 |
- Age youngest symptomatic woman | 1 | 36 |
- Age oldest asymptomatic woman | 1 | 73 |
- Age youngest woman with aided walking | 1 | 38 |
- Age oldest woman with unrestricted walking | 1 | 74 |
Outcome measures at baseline | ||
EDSS | 63 | 2.5 (0–6) |
ALDS | 64 | 89.47 (71.92–89.47) |
SF-36: Physical functioning | 64 | 0.22 (−3.69–1.16) |
SF-36: Role limitations due to physical problems | 64 | 0.52 (−2.55–1.63) |
SF-36: Bodily pain | 64 | 0.12 (− 3.11–1.50) |
SF-36: General health perceptions | 64 | −0.15 (− 3.63–1.85) |
SF-36: Vitality | 63 | −0.14 (− 2.48–1.58) |
SF-36: Social functioning | 64 | 0.24 (− 3.02–1.09) |
SF-36: Role limitations due to emotional problems | 64 | 0.55 (− 2.77–0.95) |
SF-36: Mental health | 63 | 0.33 (−1.79–1.54) |
SF-36: Physical component summary | 63 | 49.37 (17.26–62.36) |
SF-36: Mental component summary | 63 | 53.89 (35.89–66.30) |