Concept elicitation interview respondent sample: summary | ||||
---|---|---|---|---|
Patient demographic characteristics | Prophylactic regimen (n = 19) | On demand regimen (n = 5) | Inhibitor regimen (n = 6) | Total (n = 30) |
Age | ||||
Mean | 35.7 | 32.2 | 47.8 | 37.5 |
Median | 35 | 31 | 53 | 35.5 |
(range) | (20–55) | (20–47) | (23–65) | (20–65) |
Marital Status, n (%) | ||||
Single | 9 (47.4) | 4 (80) | 1 (16.7) | 14 (46.7) |
Married | 6 (31.6) | 1 (20) | 4 (66.7) | 11 (36.7) |
Partnered | 2 (10.5) | 0 (0) | 0 (0) | 2 (6.7) |
Separated | 0 (0) | 0 (0) | 1 (16.7) | 1 (3.3) |
Divorced | 2 (10.5) | 0 (0) | 0 (0) | 2 (6.7) |
Race/Ethnicity, n (%) | ||||
Asian-American | 1 (5.3) | 1 (20) | 0 (0) | 2 (6.7) |
Black/African-American | 5 (26.3) | 1 (20) | 0 (0) | 6 (20) |
Latino/Hispanic | 0 (0) | 0 (0) | 1 (16.7) | 1 (3.3) |
Mixed Race | 1 (5.3) | 1 (20) | 1 (16.7) | 3 (10) |
White/Caucasian | 11 (57.9) | 2 (40) | 4 (66.7) | 17 (56.7) |
Decline to answer | 1 (5.3) | 0 (0) | 0 (0) | 1 (3.3) |
Work Status, n (%) | ||||
Work part-time | 6 (31.6) | 0 (0) | 1 (16.7) | 7 (23.3) |
Work full time | 9 (47.4) | 2 (40) | 3 (50) | 14 (46.7) |
Student | 1 (5.3) | 1 (20) | 0 (0) | 2 (6.7) |
Not working (disabled) | 2 (10.5) | 2 (40) | 2 (33.3) | 6 (20) |
Not working | 1 (5.3) | 0 (0) | 0 (0) | 1 (3.3) |
Education, n (%) | ||||
High school | 2 (10.5) | 1 (20) | 0 (0) | 3 (10) |
Vocational/technical | 1 (5.3) | 0 (0) | 2 (33.3) | 3 (10) |
Some college | 7 (36.8) | 3 (60) | 1 (16.7) | 11 (36.7) |
College degree | 7 (36.8) | 0 (0) | 3 (50) | 10 (33.3) |
Graduate/professional | 2 (10.5) | 1 (20) | 0 (0) | 3 (10) |
Patient general health, disease and treatment characteristics | Prophylactic regimen (n = 19) | On demand regimen (n = 5) | Inhibitor regimen (n = 6) | Total (n = 30) |
---|---|---|---|---|
Hemophilia Type, n (%) | ||||
Type A | 15 (78.9) | 5 (100) | 6 (100) | 26 (86.7) |
Type B | 4 (21.1) | 0 (0) | 0 (0) | 4 (13.3) |
Hemophilia Severity Level, n (%) | ||||
Severe | 18 (94.7) | 4 (80) | 6 (100) | 28 (93.3) |
Moderate | 1 (5.3) | 1 (20) | 0 (0) | 2 (6.7) |
Number of comorbidities | ||||
Mean | 3.3 | 1.8 | 2.5 | 2.9 |
Median | 3 | 2 | 2.5 | 2.9 |
(range) | (1–7) | (0–4) | (0–4) | (0–7) |
Lifetime Inhibitor Status, n (%) | ||||
Current inhibitor | 6 (100) | 6 (20) | ||
… inhibitor status high | – | – | 4 (66.7) | 4 (13.3) |
… inhibitor status low | – | – | 2 (33.3) | 2 (6.7) |
Past inhibitor | 8 (42.1) | 0 (0) | 0 (0) | 8 (26.7) |
Never had inhibitor | 11 (57.9) | 5 (100) | 0 (0) | 16 (53.3) |
Number of years with current inhibitor | ||||
Mean | 0 (0) | 0 (0) | 36.2a | |
Median | 0 (0) | 0 (0) | 37a | |
(range) | 0 (0) | 0 (0) | (“several years”– 47) | |
Current Regimen, n (%) | ||||
Current Inhibitor regimen | – | – | 6 (100) | 6 (20) |
On Demand regimen (no current inhibitor) | – | 5 (100) | - | 5 (16.7) |
Prophylactic, regimen (no current inhibitor) | 19 (100) | – | - | 19 (63.3) |
Cognitive debriefing respondent sample: summary | ||||
---|---|---|---|---|
Patient demographic characteristics | Prophylactic regimen (n = 10) | On demand regimen (n = 2) | Inhibitor regimen (n = 2) | Total (n = 14) |
Age | ||||
Mean | 36.8 | 54.5 | 34.5 | 36.8 |
Median | 29 | 54.5 | 34.5 | 29 |
(range) | (20–59) | (45–64) | (26–43) | (20–64) |
Marital Status, n (%) | ||||
Single | 9 (90) | 0 (0) | 2 (100) | 11 (78.6) |
Married | 1 (10) | 2 (100) | 0 (0) | 3 (21.4) |
Race/Ethnicity, n (%) | ||||
Asian-American | 2 (20) | 0 (0) | 0 (0) | 2 (14.3) |
Black/African-American | 2 (20) | 0 (0) | 0 (0) | 2 (14.3) |
Latino/Hispanic | 2 (20) | 0 (0) | 1 (50) | 3 (21.4) |
White/Caucasian | 3 (30) | 2 (100) | 1 (50) | 6 (42.9) |
Decline to answer | 1 (10) | 0 (0) | 0 (0) | 1 (7.1) |
Work Status, n (%) | ||||
Work part-time | 1 (10) | 0 (0) | 1 (50) | 2 (14.3) |
Work full time | 4 (40) | 1 (50) | 1 (50) | 6 (42.9) |
Student | 1 (10) | 0 (0) | 0 (0) | 1 (7.1) |
Not working (disabled) | 2 (20) | 1 (50) | 0 (0) | 3 (21.4) |
Not working | 2 (20) | 0 (0) | 0 (0) | 2 (14.3) |
Education, n (%) | ||||
High school | 3 (30) | 0 (0) | 0 (0) | 3 (21.4) |
Some college | 4 (40) | 1 (50) | 1 (50) | 6 (42.9) |
College degree | 2 (20) | 1 (50) | 0 (0) | 3 (21.4) |
Graduate/professional | 1 (10) | 0 (0) | 1 (50) | 2 (14.3) |
Cognitive debriefing respondent sample: summary | ||||
---|---|---|---|---|
Patient general health, disease and treatment characteristics | Prophylactic regimen (n = 10) | On demand regimen (n = 2) | Inhibitor regimen (n = 2) | Total (n = 14) |
Hemophilia Type, n (%) | ||||
Type A | 8 (80) | 2 (100) | 2 (100) | 12 (85.7) |
Type B | 2 (20) | 0 (0) | 0 (0) | 2 (14.3) |
Hemophilia Severity Level, n (%) | ||||
Severe | 8 (80) | 1 (50) | 2 (100) | 11 (78.6) |
Moderate | 2 (20) | 1 (50) | 0 (0) | 3 (21.4) |
Number of comorbidities | ||||
Mean | 2.5 | 4 | 1.5 | 2.6 |
Median | 2 | 4 | 1.5 | 2 |
(range) | (0–6) | (3–5) | (1–2) | (0–6) |
Lifetime Inhibitor Status, n (%) | ||||
Current inhibitor | 2 (100) | 2 (14.3) | ||
… inhibitor status high | – | – | 2 (100) | 2 (14.3) |
Past inhibitor | 2 (20) | 0 (0) | 0 (0) | 2 (14.3) |
Never had inhibitor | 8 (80) | 2 (100) | 0 (0) | 10 (71.4) |
Current Regimen, n (%) | ||||
Current Inhibitor regimen | - | - | 2 (100) | 2 (14.3) |
On Demand regimen (no current inhibitor) | - | 2 (100) | - | 2 (14.3) |
Prophylactic, regimen (no current inhibitor) | 10 (100) | - | - | 10 (71.4) |