Table 2 Caregiver productivity and financial costs

Family lost one full income – refuse promotion or change career, n (%)

  Gave up paid employment completely

4 (18)

  Refused promotions/changed career goals

4 (18)

  Both: Gave up paid employment completely and refused promotions/changed career goals

4 (18)

  Neither: Did not give up employment or change career goals

10 (45)

Median (IQR) caregiver employment reduction, hours/week/family

24.0 (25.0)

Median (IQR) caregiver missed workdays for planned appt (past 12 months)

7.5 (13.5)

Median (IQR) caregiver missed workdays for unplanned appointment (past 12 months)

2.5 (7.0)

Median (IQR) caregiver missed workdays XLMTM-related issue (past 12 months)

4.0 (5.0)

Median (IQR) productivity loss/year, $

$33,324 ($46,462)

Median (IQR) annual direct medical out-of-pocket costs (N = 22)

Cost ($)

Wheelchair

$0 ($175)

Assistive technology

$81 ($407)

Disposable medical equipment

$339 ($1,831)

Ventilation

$0 ($0)

Medical procedures

$0 ($0)

Medical therapy

$0 ($119)

Total direct medical

$1,392 ($2,160)

Median (IQR) annual indirect medical out-of-pocket costs (N = 22)

Cost ($)

Home modifications

$528 ($1,776)

Vehicle modifications

$2,450 ($5,877)

Total indirect medical

$4,188 ($6,370)

Median (IQR) annual expenses (N = 22)

Cost ($)

Additional vacation expenses

$0 ($875)

Caregiver training

$0 ($0)

School transportation

$0 ($0)

HCP visits with travel

$500 ($775)

Specialist school costs

$0 ($0)

Total

$950 ($1,675)

Median (IQR) annual financial assistance (N = 22)

Cost ($)

SSDI assistance

$29 ($1,454)

Non-SSDI assistance

$435 ($5,556)

Total financial assistance

$1,812 ($5,407)