Table 2 Comprehensive flow of ALS progression before and after PEG tube insertion.

From: Timing and impact of percutaneous endoscopic gastrostomy insertion in patients with amyotrophic lateral sclerosis: a comprehensive analysis

 

Diagnosis(t2)

T-rec for gastrostomy(t3)

PEG insertion(t4)

One-year post-PEG(t5)

Duration from onset (months, median (IQR))

8 (5–13)

22 (15–30)

30 (20–44)

41 (29–55)

 Bulbar onset

9 (6–15)

20 (12–30)

23 (19–41)

34 (26–53)

 Limb onset

8 (5–12)

23 (15–31.5)

32 (23–47)

43 (33.5–57)

ALSFRS-R score (points, median (IQR))

41 (37–44)

30.5 (25–35)

17 (10–24)

6.5 (0–14)

 Bulbar onset

41 (37–44)

35 (30–38)

24 (16–30)

8 (0–18)

 Limb onset

41 (37–44)

28 (23–34)

14 (8–19)

5 (0–13)

ALSFRS-R bulbar score (points, median (IQR))a

10 (9–12)

8 (6–9)

4 (3–6)

 

 Bulbar onset

9 (7–10)

7 (5–7)

4 (2–5)

 

 Limb onset

11 (10–12)

8 (7–9)

5 (3–6)

 

ALSFRS-R swallowing score (points, median (IQR))b

3 (3–4)

2 (2–3)

1 (0–1)

 

 Bulbar onset

3 (3–3)

2 (2–2)

1 (0–2)

 

 Limb onset

4 (3–4)

2 (2–3)

1 (0–1)

 

Rate of ALSFRS-R decline (points, median (IQR))c

0.8 (0.5–1.4)d

0.7 (0.3–1.2)e

1.7 (0.9–4.0)f

0.6 (0.1–1.9)g

 Bulbar onset

0.7 (0.4–1.3)

0.5 (0.1–1.0)

2.1 (0.9–4.7)

1.0 (0.3–2.5)

 Limb onset

0.8 (0.5–1.4)

0.8 (0.5–1.2)

1.6 (0.9–3.4)

0.5 (0.1–1.3)

BMI (kg/m2, mean ± SD)

22.7 ± 3.2

21.3 ± 3.1

19.5 ± 3.4

 

 Bulbar onset

22.2 ± 3.2

21.1 ± 3.3

19.7 ± 3.5

 

 Limb onset

23.0 ± 3.2

21.5 ± 3.0

19.4 ± 3.3

 

Weight loss (%, mean ± SD)

 

6.1 ± 5.3

13.7 ± 11.8

 

 Bulbar onset

 

4.9 ± 5.5

11.4 ± 10.2

 

 Limb onset

 

6.7 ± 5.0

15.0 ± 12.5

 
  1. T-rec for gastrostomy, Recommended time for PEG insertion; PEG, percutaneous endoscopic gastrostomy; ALSFRS-R, amyotrophic lateral sclerosis functional rating scale-revised; IQR, interquartile range; BMI, body mass index; SD, standard deviation.
  2. aSum of the bulbar subset of ALSFRS-R questions 1–3 (speech, salivation, swallowing) ranges from 0 to 12 points; bScore for ALSFRS-R question 3 (swallowing) ranges from 0 to 4 points; cThe disease progression was measured by the rate of decline in ALSFRS-R score using the following formula: the rate of decline = (difference of ALSFRS-R score between the two-time points) / (duration between the two time points in months). dThe median (IQR) rate of decline from symptom onset(t1) to diagnosis(t2); eThe median (IQR) rate of decline from diagnosis(t2) to T-rec for gastrostomy(t3); fThe median (IQR) rate of decline from T-rec for gastrostomy(t3) to PEG insertion(t4); gThe median (IQR) rate of decline from PEG insertion(t4) to one year past PEG insertion (t5).
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