Table 3.
Baseline Sample Characteristics
| Variable | Control (n = 25) n (%) | Intervention overall (n = 25) n (%) | Intervention Phase 1 (n = 12) n (%) | Intervention, Phase 2 (n = 13) n (%) |
|---|---|---|---|---|
| Age, mean (SD) | 38.0 (12.5)* | 31.2 (9.9)* | 28.6 (5.0) | 33.5 (12.8) |
| Male gender | 13 (52) | 15 (60) | 6 (50) | 9 (69) |
| White race | 25 (100) | 25 (100) | 12 (100) | 13 (100) |
| Education | ||||
| Some high school | 0 (0) | 2 (8) | 0 (0) | 2 (15) |
| High school diploma | 10 (40) | 13 (52) | 7 (58) | 6 (46) |
| College degree | 15 (60) | 10 (40) | 5 (42) | 5 (38 |
| Professional or graduate degree | 0 (0) | 0 (0) | 0 (0) | 0 (0) |
| Financial status at end of month | ||||
| Money left over | 16 (64) | 11 (44) | 5 (42) | 6 (46) |
| Just enough money | 8 (32) | 11 (44) | 5 (42) | 6 (46) |
| Not enough money | 1 (4) | 3 (12) | 2 (17) | 1 (8) |
| FEV1% predicted (most recent), mean (SD) | 41.8 (16.6) | 41.2 (14.3) | 38.8 (9.1) | 43.5 (17.8) |
| BMI (most recent), mean (SD) | 21.0 (2.7) | 21.0 (3.1) | 21.6 (2.5) | 20.6 (3.6) |
| Supplemental oxygen use, n (%) | 5 (20) | 3 (12) | 2 (17) | 1 (8) |
| No. of CF-related hospitalizations in past 12 months, mean (IQR) | 1.0 (1.0) | 1.7 (1.7) | 1.6 (1.6) | 1.8 (1.9) |
| No. of CF clinic outpatient visits in past 12 months, mean (IQR) | 5.7 (2.4) | 5.7 (1.6) | 5.3 (1.7) | 6.0 (1.5) |
| Quality of life | ||||
| CFQ-R (mean, SD) | ||||
| Physical functioning | 54.3 (25.2) | 61.9 (24.9) | 63.1 (20.2) | 60.8 (29.3) |
| Vitality | 54.0 (17.2) | 54.3 (18.5) | 58.3 (14.7) | 50.6 (21.4) |
| Health perception | 56.0 (23.2) | 52.0 (25.2) | 54.6 (23.9) | 49.6 (27.1) |
| Respiratory symptoms | 56.8 (15.6) | 59.4 (18.2) | 62.0 (18.0) | 56.9 (18.8) |
| Treatment burden | 49.8 (14.0) | 52.9 (21.8) | 60.2 (21.4) | 46.2 (20.7) |
| Role functioning | 72.3 (24.3) | 66.0 (22.6) | 74.3 (19.6) | 58.3 (23.1) |
| Emotional functioning | 79.7 (18.0) | 75.5 (20.5) | 82.8 (14.6) | 68.7 (23.3) |
| Social functioning | 62.7 (20.2) | 63.3 (15.8) | 69.4 (14.5) | 57.7 (15.3) |
| PROMIS Global Health (mean, SD) | ||||
| Physical health | 42.7 (4.1) | 42.2 (4.3) | 44.1 (3.1)* | 40.5 (4.5)* |
| Mental health | 41.7 (4.0) | 42.4 (4.5) | 41.9 (3.5) | 42.8 (5.4) |
| Mental health | ||||
| HADS (mean, SD) | ||||
| Anxiety | 4.9 (4.4) | 5.2 (3.4) | 4.7 (2.4) | 5.8 (4.2) |
| Depression | 3.4 (3.0) | 3.3 (3.1) | 2.5 (2.1) | 4.1 (3.7) |
| PHQ-9 (mean, SD) | 4.4 (3.5) | 4.4 (3.5) | 3.8 (2.9) | 4.8 (4.0) |
| Symptoms | ||||
| ESAS Global Distress Score (mean, SD) | 207.6 (136.0) | 187.6 (126.7) | 141.7 (78.8) | 230.0 (149.5) |
| Advance care planning | ||||
| Living will signed | 5 (20) | 8 (32) | 3 (25) | 5 (38) |
| Advance directive signed | 6 (24) | 6 (24) | 3 (25) | 3 (28) |
| Surrogate decision-maker identified to primary physician | 5 (20) | 6 (24) | 4 (33) | 2 (18) |
| End of life medical preferences discussed | 6 (24) | 4 (16) | 2 (17) | 2 (15) |
BMI, body mass index; CFQ-R, Cystic Fibrosis Questionnaire-Revised; HADS, Hospital Anxiety and Depression Scale; IQR, interquartile range; PHQ-9, Patient Health Questionnaire-9; SD, standard deviation.