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Table 1 AdvSM and ISM demographic and health characteristics: concept elicitation and cognitive briefing interviews

From: Development of symptom-focused outcome measures for advanced and indolent systemic mastocytosis: the AdvSM-SAF and ISM-SAF©

  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%)
  1. *Unless otherwise noted
  2. Demographic data were not collected for one participant
  3. Not mutually exclusive
  4. §Counts are not provided for past treatments if these were not reported by any respondents and/or clinicians