Introduction
Methods
Design
Qualitative phase
Quantitative phase
Sample
Eligibility criteria
Recruitment
Procedure
Incentive payments
Measures
Statistical analysis
Results
Sample characteristics
N | 458 |
Caregiver age | |
Mean (SD) | 39.24 (8.66) |
Caregiver gender (%) | |
Male | 11.8 |
Female | 88.0 |
Caregiver education (%) | |
High school or less | 13.8 |
Some college | 38.7 |
College | 31.4 |
Graduate degree | 16.2 |
Insurance type (%) | |
Private | 73.6 |
Medicare, medicaid, CHAMPUS, HIS, supplemental | 26.0 |
Does not have insurance | 4.6 |
Missing | 1.1 |
Number of children | |
Mean (SD) | 1.93 (1.20) |
Number of people caring for with hemophilia (%) | |
1 | 75.6 |
2 | 20.1 |
3 | 3.3 |
4 | 0.9 |
Relationship to care recipient (%) | |
Son | 74.2 |
Daughter | 1.8 |
Children | 14.2 |
Other family member | 6.3 |
Multiple family members | 3.3 |
Number of children (under age 18) with hemophilia (%) | |
0 | 15.1 |
1 | 66.4 |
2 | 15.3 |
3 | 2.6 |
4 | 0.7 |
Number of years caring for patient | |
Mean (SD) | 10.48 (6.95) |
Severity of hemophilia (%) | |
Mild (%) | 7.4 |
Moderate (%) | 15.1 |
Severe (%) | 77.1 |
On prophylaxis regimen (% yes) | |
% yes | 79.0 |
Race (%) | |
American Indian or Alaska Native | 2.8 |
Middle Eastern | 1.1 |
South Asian | 1.1 |
Other Asian | 3.1 |
Black or African American | 7.6 |
Native Hawaiian or Pacific Islander | 0.9 |
Caucasian | 81.0 |
Clotting factor products (%) | |
Advate | 41.1 |
Adynovate | 1.1 |
Alprolix | 3.7 |
Benefix | 14.9 |
Eloctate | 5.2 |
Helixate FS | 3.5 |
Hemofil | 0.2 |
Ixinity | 0.5 |
Kogenate FS | 9.6 |
Monoclate | 0.4 |
Mononine | 0.5 |
Novoeight | 2.8 |
Recombinate | 2.5 |
Rixibis | 1.6 |
Xyntha | 3.0 |
Other | 9.1 |
Psychometric development of the HCI
Factor analyses and IRT analyses
Results of the round one EFAs
Results of the round two EFAs
Subscale | Item content summary | CFI | RMSEA (90% confidence interval) | Factor loading | Score range | Alpha reliability | Test–retest stability |
---|---|---|---|---|---|---|---|
Practical Impact | Ordering supplies, preparing medication | 1.00 | 0.00 | 0.70 | 37.2–80.5 | 0.78 | 0.67 |
Medical appointments | (0.000, 0.000) | 0.85 | |||||
Travel to hospital | 0.81 | ||||||
Symptom Impact | Witness pain | 0.99 | 0.08 | 0.76 | 28.0–68.9 | 0.81 | 0.68 |
Worry about pain during infusions | (0.041, 0.115) | 0.58 | |||||
Worry about bleeding pain | 0.88 | ||||||
Suffer when see pain | 0.83 | ||||||
Distressed with breakthrough bleeding | 0.62 | ||||||
Lifestyle Impact | Not enough time for self | 1.00 | 0.04 | 0.92 | 36.9–73.9 | 0.90 | 0.74 |
Stressed | (0.000, 0.108) | 0.93 | |||||
Give up exercise | 0.84 | ||||||
Family gives up things | 0.79 | ||||||
Social Impact | Worry about family impact | 0.99 | 0.21 | 0.77 | 38.1–79.8 | 0.89 | 0.79 |
Limited time for other family members | (0.159, 0.268) | 0.86 | |||||
Stressed as a family | 0.89 | ||||||
Strain with spouse/partner | 0.83 | ||||||
Physical Impact | Fatigue | 0.99 | 0.06 | 0.91 | 39.0–77.5 | 0.93 | 0.9 |
Sleepless nights | (0.025, 0.103) | 0.90 | |||||
Tired emotionally and physically | 0.93 | ||||||
Appetite changes | 0.89 | ||||||
Health suffered | 0.86 | ||||||
Emotional Impact | Ups and downs | 1.00 | 0.02 | 0.88 | 37.7–76.1 | 0.91 | 0.89 |
Lost control | (0.000, 0.071) | 0.90 | |||||
Always on edge | 0.89 | ||||||
Stress overwhelming | 0.78 | ||||||
Impending doom | 0.87 | ||||||
Financial Impact | Financial burdens on family | 1.00 | 0.08 | 0.72 | 37.9–73.1 | 0.88 | 0.78 |
Interfere with job or daily activities | (0.044, 0.118) | 0.86 | |||||
Lost time from work | 0.88 | ||||||
Take turns going to work | |||||||
Cut down work hours | 0.84 | ||||||
Positive Emotions | Feel better about self | 1.00 | 0.10 | 0.73 | 19.6–62.2 | 0.88 | 0.8 |
More compassionate | (0.067, 0.139) | 0.66 | |||||
Stronger person | 0.94 | ||||||
Inner strength | 0.97 | ||||||
Sense of perspective | 0.83 |
Reliability
Scoring the HCI
Creating a Burden Summary score
Construct validity of the HCI
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