Table 3 Healthcare utilization
From: Diagnostic and clinical experience of patients with pantothenate kinase-associated neurodegeneration
All patients N = 39 | Lowest n = 9 | Second Lowest n = 10 | Third Lowest n = 10 | Highest n = 10 | P-value | |
|---|---|---|---|---|---|---|
PKAN treatments received | ||||||
Medication from doctor, n (%) | 39 (100%) | 9 (100%) | 10 (100%) | 10 (100%) | 10 (100%) | |
Vitamins or OTC, n (%) | 35 (89.7%) | 8 (88.9%) | 7 (70.0%) | 10 (100%) | 10 (100%) | 0.0886 |
Injections (botulinum toxin, etc), n (%) | 25 (64.1%) | 4 (44.4%) | 7 (70.0%) | 5 (50.0%) | 9 (90.0%) | 0.1422 |
Therapies (physical, speech, occupational, etc), n (%) | 36 (92.3%) | 7 (77.8%) | 10 (100%) | 9 (90.0%) | 10 (100%) | 0.2198 |
Surgery, n (%) | 16 (41.0%) | 2 (22.2%) | 2 (20.0%) | 3 (30.0%) | 9 (90.0%) | 0.0036 |
DBS device | 9 (23.1%) | 2 (22.2%) | 2 (20.0%) | 2 (20.0%) | 3 (30.0%) | 0.9443 |
Other surgery | 14 (35.9%) | 2 (22.2%) | 1 (10.0%) | 2 (20.0%) | 9 (90.0%) | 0.0006 |
Other treatment, n (%)a | 14 (35.9%) | 1 (11.1%) | 5 (50.0%) | 4 (40.0%) | 4 (40.0%) | 0.3322 |
PKAN healthcare utilization past year | ||||||
Medical visits | 0.3446 | |||||
Mean (SD) | 13.0 (13.1) | 12.2 (16.8) | 7.6 (5.3) | 13.9 (15.6) | 18.3 (11.9) | |
Median | 8.0 | 6.0 | 5.0 | 7.0 | 15.0 | |
Range (min, max) | (1.0–56.0) | (2.0–56.0) | (1.0–15.0) | (3.0–50.0) | (1.0–40.0) | |
Therapy visits | n = 38/39 | n = 9/10 | 0.2188 | |||
Mean (SD) | 55.2 (78.5) | 23.1 (50.2) | 33.7 (32.1) | 85.1 (126.5) | 78.7 (69.1) | |
Median | 22.5 | 6.0 | 26.5 | 20.0 | 46.0 | |
Range (min, max) | (0.0–384.0) | (0.0–156.0) | (0.0–100.0) | (0.0–384.0) | (1.0–208.0) | |
Caregiving required | ||||||
Part-time caregiver, n (%) | 25 (64.1%) | 3 (33.3%) | 6 (60.0%) | 8 (80.0%) | 8 (80.0%) | 0.1656 |
Age at onset, y | n = 23/25 | n = 1/3 | ||||
Mean (SD) | 11.5 (7.6) | 12.0 (NA) | 17.7 (8.0) | 10.8 (7.9) | 7.6 (4.8) | 0.0975 |
Median | 11.0 | 12.0 | 19.0 | 11.0 | 7.0 | |
Range (min, max) | (< 1.0–28.0) | (12.0–12.0) | (6.0–28.0) | (< 1.0–20.0) | (< 1.0–14.0) | |
Full-time caregiver, n (%) | 21 (53.8%) | 1 (11.1%) | 3 (30.0%) | 7 (70.0%) | 10 (100%) | 0.0021 |
Age at onset, y | n = 20/21 | n = 2/3 | ||||
Mean (SD) | 10.3 (6.6) | 19.0 (NA) | 16.5 (9.2) | 9.7 (7.3) | 8.5 (5.1) | 0.2379 |
Median | 10.0 | 19.0 | 16.5 | 12.0 | 8.5 | |
Range (min, max) | (< 1.0–23.0) | (19.0–19.0) | (10.0–23.0) | (< 1.0–20.0) | (< 1.0–17.0) | |