Table 1. Characteristics of Caregivers Participating in Interviews and Their Corresponding Patients (n = 27 Caregiver-Patient Pairs).
| Caregiver and Patient Characteristics | Number (range or %) |
|---|---|
| Caregivers | |
| Relationship to patient | |
| Parent | 24 (88) |
| Grandparent | 1 (4) |
| Spouse | 1 (4) |
| Friend | 1 (4) |
| Mean age in years (range) | 58 (32–82) |
| Female gender | 23 (85) |
| Primary caregiver to patient | 26 (96) |
| Patients | |
| Mean age at death in years (range) | 24 (8–47) |
| Female gender | 18 (67) |
| Lung function: average FEV1 over last | |
| 6 months of life | |
| Less than 40% of predicteda | 24 (89) |
| Less than 30% of predictedb | 16 (59) |
| Lung transplant status | |
| Underwent transplant | 13 (48) |
| Awaiting transplant | 5 (19) |
| Declined transplant | 2 (7) |
| Not referred for transplantc | 7 (26) |
| Location of death | |
| Hospital, intensive care unit | 9 (33) |
| Hospital, medical ward | 13 (48) |
| Home | 5 (19) |
| Functional status during last 6 months of life |
|
| Very limited | 9 (33) |
| Somewhat limited | 14 (52) |
| Not very limited | 4 (15) |
| Not limited at all | 0 (—) |
a
Severe lung disease in CF is defined as FEV1 below 40% of predicted.
b
FEV1 below 30% is the cutoff below which lung transplantation may be considered.
c
Of those not referred for transplant, five did not meet medical criteria, one had medical contraindications to transplant, and one was nonadherent to medical therapies.