Table 1 AdvSM and ISM demographic and health characteristics: concept elicitation and cognitive briefing interviews
AdvSM patients | ISM patients | |||
|---|---|---|---|---|
CE interviews Total (N = 12) n (%)* | CD interviews Total (N = 13) n (%)* | CE interviews Total (N = 15)† n (%)* | CD interviews Total (N = 10) n (%)* | |
Age (years) | ||||
Range | 38.9–77.5 | 49.8–82.6 | 26.7–69.0 | 29.4–56.7 |
Mean (standard deviation [SD]) | 62.1 (12.9) | 68.7 (10.9) | 48.3 (14.2) | 45.0 (10.0) |
Gender | ||||
Female | 7 (58.3%) | 7 (53.8%) | 14 (93.3%) | 8 (80.0%) |
Male | 5 (41.7%) | 6 (46.2%) | 1 (6.7%) | 2 (20.0%) |
Race | ||||
White | 7 (58.3%) | 12 (92.3%) | 14 (93.3%) | 10 (100.0%) |
Not answered | 4 (33.3%) | 0 (0.0%) | – | – |
Asian | 1 (8.3%) | 0 (0.0%) | – | – |
American Indian or Alaska Native | 0 (0.0%) | 1 (7.7%) | 1 (6.7%) | 0 (0.0%) |
Ethnicity | ||||
Data not collected in Germany | 7 (58.3%) | 7 (53.8%) | – | – |
No, not Spanish/Hispanic/Latino | 4 (33.3%) | 5 (38.5%) | 13 (86.7%) | 10 (100.0%) |
Yes, Puerto Rican | – | – | 1 (6.7%) | 0 (0.0%) |
Not answered | 1 (8.3%) | 1 (7.7%) | 1 (6.7%) | 0 (0.0%) |
Highest level of education | ||||
High school diploma (or GED) or less | 3 (25.0%) | 1 (7.7%) | 2 (13.3%) | 2 (20.0%) |
Some college or certificate program | 4 (33.3%) | 7 (53.8%) | 3 (20.0%) | 2 (20.0%) |
College or university degree (two- or four-year) | 2 (16.7%) | 4 (30.8%) | 8 (53.3%) | 3 (30.0%) |
Graduate degree | 3 (25.0%) | 1 (7.7%) | 1 (6.7%) | 3 (30.0%) |
Other | – | – | 1 (6.7%) | 0 (0.0%) |
Work status | ||||
Retired | 6 (50.0%) | 9 (69.2%) | 1 (6.7%) | 0 (0.0%) |
On disability | 3 (25.0%) | 2 (15.4%) | 7 (46.7%) | 3 (30.0%) |
Working part-time | 3 (25.0%) | 2 (15.4%) | 3 (20.0%) | 2 (20.0%) |
Working full-time | 1 (8.3%) | 1 (7.7%) | 3 (20.0%) | 4 (40.0%) |
Homemaker | – | – | 2 (13.3%) | 0 (0.0%) |
Student | – | – | 1 (6.7%) | 0 (0.0%) |
Unemployed | – | – | 0 (0.0%) | 1 (10.0%) |
Type of systemic mastocytosis | ||||
AHN | 6 (50.0%) | 8 (61.5%) | – | – |
ASM | 3 (25.0%) | 2 (15.4%) | – | – |
MCL | 3 (25.0%) | 3 (23.1%) | – | – |
ISM | – | – | 13 (81.3%) | 10 (100.0%) |
SSM | – | – | 3 (18.7%) | 0 (0.0%) |
Time since diagnosis (years) | ||||
Range | 0.2–3.8 | 0.1–8.4 | 0.3–18.1 | – |
Mean (SD) | 0.7 (1.0) | 0.7 (2.6) | 4.3 (4.1) | – |
Other health conditions (participant-reported)‡ | ||||
Heart disease | 2 (16.7%) | 0 (0.0%) | 1 (6.7%) | 0 (0.0%) |
High blood pressure | 2 (16.7%) | 4 (30.8%) | 2 (13.3%) | 2 (20.0%) |
Chronic obstructive pulmonary disease (COPD) | 0 (0.0%) | 3 (23.1%) | 0 (0.0%) | 1 (10.0%) |
High cholesterol | 2 (16.7%) | 0 (0.0%) | 2 (13.3%) | 0 (0.0%) |
Asthma | – | – | 2 (13.3%) | 1 (10.0%) |
Fibromyalgia | – | – | 2 (13.3%) | 2 (20.0%) |
Liver disease | 2 (16.7%) | 1 (7.7%) | 1 (6.7%) | 0 (0.0%) |
Kidney disorder | – | – | 1 (6.7%) | 0 (0.0%) |
Thyroid disease | 2 (16.7%) | 2 (15.4%) | 3 (20.0%) | 1 (10.0%) |
Depression/anxiety | 1 (8.3%) | 2 (15.4%) | 8 (53.3%) | 7 (70.0%) |
Migraine headaches | – | – | 4 (26.7%) | 0 (0.0%) |
Cancer | 1 (8.3%) | 1 (7.7%) | 0 (0.0%) | 2 (20.0%) |
Stomach/intestinal disorder | 1 (8.3%) | 1 (7.7%) | 3 (20.0%) | 4 (40.0%) |
None | 2 (16.7%) | 2 (15.4%) | 3 (20.0%) | 0 (0.0%) |
Other | 2 (16.7%) | 3 (23.1%) | 5 (33.3%) | 3 (30.0%) |
Not answered | 1 (8.3%) | 1 (7.7%) | 0 (0.0%) | 1 (10.0%) |
Treatments (current and past)‡;§ | ||||
Tyrosine kinase inhibitors | Current: 6 (50.0%) Past: 3 (25.0%) | Current: 6 (46.2%) Historical: 3 (23.1%) | Current: 3 (18.8%) Past: 1 (6.3%) | Current: 1 (10.0%) |
H1 antagonists | Current: 5 (41.7%) Past: 2 (16.7%) | Current: 4 (30.8%) Historical: 3 (23.1%) | Current: 16 (100.0%) Past: 3 (18.8%) | Current: 7 (70.0%) Past: 2 (20.0%) |
Corticosteroids | Current: 5 (41.7%) Past: 1 (8.3%) | Current: 3 (23.1%) Historical: 2 (15.4%) | Current: 2 (12.5%) Past: 4 (25.0%) | Current: 1 (10.0%) Past: 6 (60.0%) |
Proton pump inhibitor | Current: 5 (41.7%) | Current: 5 (38.5%) | Current: 3 (18.8%) Past: 1 (6.3%) | Current: 2 (20.0%) Past: 1 (10.0%) |
H2 antagonists | Current: 4 (33.3%) Past: 1 (8.3%) | Current: 5 (38.5%) Historical: 1 (7.7%) | Current: 14 (87.5%) Past: 0 (0.0%) | Current: 6 (60.0%) Past: 2 (20.0%) |
Non-steroidal anti-inflammatory drugs | Current: 4 (33.3%) | Current: 4 (30.8%) | Current: 3 (18.8%) Past: 0 (0.0%) | Current: 3 (30.0%) Past: 1 (10.0%) |
Cytokine/immunomodulatory drugs | Current: 2 (16.7%) Past: 1 (8.3%) | Current: 1 (7.7%) Historical: 1 (7.7%) | Current: 2 (12.5%) Past: 3 (18.8%) | Past: 2 (20.0%) |
Beta-adrenergic agonists | Current: 1 (8.3%) | – | Current: 3 (18.8%) Past: 0 (0.0%) | Current: 3 (30.0%) Past: 1 (10.0%) |
Anti-IgE | – | – | Current: 0 (0.0%) Past: 1 (6.3%) | – |
Cannabis | Current: 1 (8.3%) | – | – | – |
Aldactone® | Current: 1 (8.3%) | – | – | – |
Zofran® | Current: 1 (8.3%) | – | – | – |
Tramadol | Current: 1 (8.3%) | – | – | – |
Zaditor® | Current: 1 (8.3%) | – | – | – |
Hydroxycarbamide | Current: 1 (8.3%) | – | – | – |
Zoledronate | Current: 1 (8.3%) | – | – | – |
Purine nucleoside analogues | Current: 0 (0.0%) Past: 2 (16.7%) | Historical: 3 (23.1%) | Current: 0 (0.0%) Past: 1 (6.3%) | – |
Leukotriene antagonist | – | Current: 1 (7.7%) | Current: 7 (43.8%) Past: 0 (0.0%) | Current: 3 (30.0%) |
Other | – | Current: 6 (46.2%) | Current: 2 (12.5%) Past: 4 (25.0%) | Current: 8 (80.0%) Past: 2 (20.0%) |