TABLE 2.
Management practices pertaining to use of hormonal therapy in West syndrome in the surveyed countries
| Question (Responses received) | India | Pakistan | Myanmar | Sri Lanka | Bhutan | Nepal | Bangladesh |
|---|---|---|---|---|---|---|---|
| ACTH used in practice (123) | 65/76 | 17/22 | 0/9 | 2/6 | 0/5 | 0/3 | 2/2 |
| Most common preparation of ACTH used (56) | Acton Prolongatum (41/50); Others: (9/50) | Acton Prolongatum (2/4); Others:(2/4) | NA | No response | NA | NA | Acton Prolongatum (1/2); Any (1/2) |
| Regimen used for ACTH(81) | |||||||
| Gradually Escalating | 24 | 7 | NA | — | NA | NA | — |
| Maximal dose at initiation | 39 | 5 | 2 | 2 | |||
| Either | 2 | — | — | — | |||
| Initial maximal dose used (48) | 75 IU (18/39); 60 IU (10/39); ≤40 IU (9/39); 3 IU/kg and 75 IU/m2 (1/39 each) | 60 IU (3/5), 75 IU (2/5) | NA | 75‐80 IU (2/2) | NA | NA | ≤40 IU (2/2) |
| Frequency of ACTH administration (80) | Once daily (56/64); twice a day (5/64), alternate day (3/64) | Once daily (10/12), twice a day (1/12), alternate day (1/12) | NA | Alternate day (2/2) | NA | NA | Once daily (2/2) |
| ACTH used in combination with other antiepileptic drugs (81) | 55/65 | 10/12 | NA | 1/2 | NA | NA | 2/2 |
| Maximum dose of oral steroids you use (in mg/kg/d) (90) | 3‐4 (30/63), 2 (18/63); 5‐8 (13/63); 4‐6 (1/63); 40 mg/d (1/63) | 2 (9/12), 3‐4 (1/12); 5‐8 (2/12) | 60 mg/d (5/8); 3‐4 (1/8); 5‐8 (1/8); 40‐60 mg/d (1/8) | 5‐8 (2/2) | 2 (2/2) | 60 mg/d (1/1) | 2 (2/2) |
| Duration of treatment for hormonal therapy (91) | 4‐12 w (45/64); < 4 w (16/64); >12 w (3/64) | 4‐12 w (10/12); < 4 w (2/12) | 4‐12 w (5/8); <4 w (3/8 | 4‐12 w (2/2) | 4‐12 w (2/2) | 4‐12 w (1/1) | 4‐12 w (2/2) |
| Frequency of blood pressure monitoring advised while on ACTH/oral steroids (91) | Daily (23/65), Weekly (20/65), Alternate day (17/65); Others (5/65) | Weekly (7/11), daily and alternate day (2/11 each) | Daily (4/8), Weekly (3/8), Alternate day (1/8) | Daily or weekly (1/2 each) | Daily or weekly (1/2 each) | Weekly (1/1) | Weekly (2/2) |
| Frequency of blood/ urine sugar monitoring while on ACTH/ oral steroids (95) | Weekly (34/65), alternate day (12/65), daily (7/65), no monitoring (6/65), others (6/65) | Weekly (7/12), daily (2/12), no monitoring (2/12), alternate day (1/12) | Weekly (3/8), at initiation and end of therapy (3/8), once at 2 w or no monitoring(1/8 each) | Daily or weekly (1/2 each) | Weekly or no monitoring (1/2 each) | Weekly (1/1) | Weekly (2/2) |
| Prophylactic therapy used after attaining remission with hormonal therapy (92) | 33/65 | 10/12 | 0/8 | 0/2 | 0/2 | 0/1 | 1/2 |
| Early relapse (within 1 year) treated with repeat hormonal therapy (92) | 48/65 | 8/12 | 8/8 | 2/2 | 1/2 | 1/1 | 2/2 |
Abbreviations: ACTH, adrenocorticotrophic hormone; d, day; IU, International unit; NA, not applicable; w, weeks.