Skip to main content

Table 6 Time to diagnosis

From: Understanding caregiver descriptions of initial signs and symptoms to improve diagnosis of metachromatic leukodystrophy

Characteristics

Overall (n = 32*)

Late infantile (n = 20)

Juvenile (n = 11)

Age at first symptom onset (years)

 Mean

3.4

1.4

7.2

 Median

1.5

1.5

5.6

 Range

0.3–14.0

0.3–2.5

3.5–14.0

Age at diagnosis (years)

 Mean

4.4

2.3

7.8

 Median

2.7

2.3

6.2

 Range

1.2–14.3

1.2–3.5

4.5–14.3

Time between symptom onset and diagnosis (months)**

 Mean

13.3

10.7

11.6

 Median

10.0

10.0

6.0

 Range

2.0–90.0

2.0–28.0

2.0–36.0

  1. *One respondent is not accounted for in onset type breakout due to reportedly being a borderline late infantile/juvenile case
  2. **Excludes 2 individuals (6.3%) who were diagnosed through genetic testing as a result of a sibling’s diagnosis and received diagnosed at or before onset of symptoms (1 DE and 1 FR individual)