Introduction
Methods
Design and sample
Procedure
Measures
Statistical analysis
Results
Sample characteristics
Have baseline data only (n = 135) | Have baseline and follow- up data (n = 323) | Test statistic comparing baseline versus FU groups | P value | ||
---|---|---|---|---|---|
Caregiver age | Mean (SD) | 39.71 (8.92) | 40.46 (8.56) | − 0.84 | 0.403 |
Caregiver gender | Male (%) | 16% | 10% | 2.7046 | 0.100 |
Female (%) | 84% | 90% | |||
Missing (%) | 1% | 0% | |||
Caregiver education | High school or less (%) | 14% | 14% | 5.6534 | 0.130 |
Some college (%) | 44% | 36% | |||
College (%) | 31% | 32% | |||
Graduate degree (%) | 10% | 19% | |||
Race | American Indian or Alaska Native (%) | 4% | 2% | 1.7903 | 0.181 |
Middle Eastern (%) | 1% | 1% | Fisher’s exact | 0.604 | |
South Asian (%) | 1% | 1% | Fisher’s exact | 0.640 | |
Other Asian (%) | 3% | 3% | Fisher’s exact | 0.940 | |
Black or African American (%) | 7% | 8% | 0.258 | 0.612 | |
Native Hawaiian or Pacific Islander (%) | 1% | 1% | Fisher’s exact | 0.844 | |
Caucasian (%) | 81% | 81% | 0.0283 | 0.866 | |
Marital status | Never married (%) | 10% | 7% | Fisher’s exact | 0.292 |
Married (%) | 70% | 74% | |||
Cohabitation/domestic partnership (%) | 5% | 4% | |||
Separated (%) | 1% | 4% | |||
Divorced (%) | 13% | 9% | |||
Widowed (%) | 1% | 2% | |||
Number of children | Mean (SD) | 1.79 (1.18) | 1.99 (1.20) | − 1.62 | 0.106 |
Number of children with hemophilia | 0 (%) | 23% | 12% | Fisher’s exact |
0.035
|
1 (%) | 58% | 70% | |||
2 (%) | 16% | 15% | |||
3 (%) | 2% | 3% | |||
4 (%) | 1% | 1% | |||
Number of people caring for with hemophilia | 1 (%) | 76.30% | 75.23% | Fisher’s Exact | 0.756 |
2 (%) | 20% | 20.12% | |||
3 (%) | 2.22% | 3.72% | |||
4 (%) | 1.48% | 0.62% | |||
5 (%) | 0.31% | ||||
Relationship to care recipient | Son (%) | 73% | 75% | Fisher’s exact |
0.032
|
Daughter (%) | 4% | 1% | |||
Children (%) | 10% | 16% | |||
Brother (%) | 0% | 0% | |||
Other Family Member (%) | 8% | 6% | |||
Multiple Family Members (%) | 4% | 3% | |||
Number of years caring for patient | Mean (SD) | 12.70 (8.01) | 11.67 (7.25) | 1.35 | 0.179 |
Insurance typea | Private (%) | 73% | 74% | 0.006 | 0.938 |
Medicare, Medicaid, CHAMPUS, HIS Supplemental (%) | 24% | 26.93% | 0.5169 | 0.472 | |
Does not have insurance (%) | 5.19% | 4% | 0.1575 | 0.691 |
Have baseline data only (n = 135) | Have baseline and follow-up data (n = 323) | Test statistic comparing baseline versus FU groups | P value | |
---|---|---|---|---|
Baseline PROs | ||||
HCI | ||||
Practical impact | 50.44 (9.95) | 49.74 (9.96) | 0.684 | 0.49 |
Symptom impact | 49.81 (10.45) | 50.04 (9.81) | − 0.2185 | 0.83 |
Social impact | 51.08 (10.73) | 49.47 (9.57) | 1.5775 | 0.12 |
Physical impact | 50.97 (10.66) | 49.54 (9.66) | 1.3997 | 0.16 |
Emotional impact | 51.43 (10.66) | 49.34 (9.60) | 2.0569 |
0.04
|
Financial impact | 50.90 (10.48) | 49.53 (9.70) | 1.2653 | 0.21 |
Positive emotions | 50.34 (9.31) | 49.90 (10.28) | 0.4308 | 0.67 |
Lifestyle impact | 50.91 (10.17) | 49.55 (9.86) | 1.3355 | 0.18 |
Burden | 50.62 (10.28) | 49.63 (9.78) | 0.8935 | 0.37 |
PedsQL | ||||
Parent HRQL | 62.12 (22.55) | 67.04 (21.63) | − 2.1913 |
0.03
|
Family functioning score | 63.22 (22.98) | 69.21 (22.17) | − 2.6019 |
0.01
|
Total score | 60.89 (20.95) | 65.72 (20.09) | − 2.317 |
0.02
|
WPAI | ||||
% Overall work impairment due to health | 28.85 (30.40) | 24.92 (25.27) | 1.2035 | 0.23 |
Correlations among the three GAC items
Longitudinal construct validity
HCI Subscale | Reduced burden (n = 69) | No change in burden (n = 153) | Increased Burden (n = 100) | P* | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
MID (Mean Δ) | SD of Δ | MSRM | 95% CI | MID (Mean Δ) | SD of Δ | MSRM | 95% CI | MID (Mean Δ) | SD of Δ | MSRM | 95% CI | |||||
Practical impact | − 2.34 | 9.39 | − 0.25 | − 5.35 | − 0.21 | 0.44 | 8.49 | 0.05 | − 0.99 | 1.88 | 1.77 | 9.54 | 0.19 | − 0.95 | 3.61 |
0.01
|
Symptom impact | − 1.74 | 8.55 | − 0.20 | − 4.38 | 0.83 | 0.03 | 9.40 | 0.00 | − 1.42 | 1.48 | 1.68 | 9.07 | 0.19 | − 0.66 | 3.96 | 0.06 |
Social impact | − 1.70 | 7.21 | − 0.24 | − 4.56 | 0.14 | 0.50 | 8.34 | 0.06 | − 0.81 | 1.81 | 2.26 | 8.72 |
0.26
| − 0.33 | 3.84 |
0.01
|
Physical impact | − 1.66 | 7.24 | − 0.23 | − 4.28 | 0.08 | 0.44 | 6.82 | 0.06 | − 0.78 | 1.65 | 2.48 | 8.99 |
0.28
| 0.11 | 3.97 |
0.00
|
Emotional impact | − 1.78 | 7.52 | − 0.24 | − 4.72 | − 0.06 | 0.61 | 8.03 | 0.08 | − 0.68 | 1.91 | 2.70 | 8.74 |
0.31
| 0.02 | 4.15 |
0.00
|
Financial impact | − 1.51 | 8.10 | − 0.19 | − 3.49 | 1.01 | − 0.27 | 8.10 | − 0.03 | − 1.52 | 0.99 | 3.16 | 7.39 |
0.43
| 1.44 | 5.43 |
0.00
|
Lifestyle impact | − 1.10 | 8.85 | − 0.12 | − 3.79 | 0.69 | 0.45 | 7.59 | 0.06 | − 0.79 | 1.70 | 1.87 | 7.51 |
0.25
| − 0.57 | 3.40 | 0.05 |
Positive emotions | − 1.47 | 7.97 | − 0.18 | − 4.00 | 1.13 | − 0.08 | 8.91 | 0.00 | − 1.46 | 1.40 | 1.45 | 9.79 | 0.15 | − 0.82 | 3.73 | 0.12 |
Burden summary
| − 2.20 | 6.86 | − 0.32 | − 4.40 | − 0.50 | 0.24 | 6.53 | 0.04 | − 0.84 | 1.33 | 2.57 | 7.27 |
0.35
| 0.60 | 4.06 |
0.00
|