Table 1.
Demographic and health summary of interview participants
| Characteristic | Concept elicitation participants (N = 21) | Cognitive interview participants (N = 20) |
|---|---|---|
| Country of residence | ||
| United States | 10 (47.6%) | 10 (50.0%) |
| Netherlands | 7 (33.3%) | 7 (35.0%) |
| Germany | 4 (19.0%) | 3 (15.0%) |
| Age (y) | ||
| Mean (standard deviation) | 38.9 (11.8) | 43.3 (13.6) |
| Min‐Max | 19.4‐58.4 | 21‐78 |
| Gender | ||
| Female | 11 (52.4%) | 11 (55.0%) |
| Male | 10 (47.6%) | 9 (45.0%) |
| Race | ||
| Data not collecteda | 11 (52.4%) | 10 (50.0%) |
| White | 10 (47.6%) | 10 (50.0%) |
| Ethnicity | ||
| Data not collecteda | 11 (52.4%) | 10 (50.0%) |
| Not Hispanic/Latino | 10 (47.6%) | 10 (50.0%) |
| Community | ||
| Data not collecteda | 11 (52.4%) | 10 (50.0%) |
| Not Amish | 6 (28.6%) | 4 (20.0%) |
| Amish | 4 (19.0%) | 5 (25.0%) |
| Data missing | 0 (0.0%) | 1 (5.0%)b |
| Highest level of education | ||
| Currently in high school | 1 (4.8%) | 0 (0.0%) |
| High school (no degree) or lessc | 5 (23.8%) | 5 (25.0%) |
| High school graduate (or equivalent)f | 2 (9.5%) | 4 (20.0%) |
| Some college (no degree) | 3 (14.3%) | 1 (5.0%) |
| Associate's degree | 2 (9.5%) | 0 (0.0%) |
| Bachelor's degreee | 3 (14.3%) | 5 (25.0%) |
| Master's degreed | 4 (19.0%) | 4 (20.0%) |
| Professional degree | 1 (4.8%) | 0 (0.0%) |
| Doctoral degree | 0 (0.0%) | 1 (5.0%) |
| Work statusg | ||
| Working full‐time | 9 (42.9%) | 9 (45.0%) |
| Studenth | 4 (19.0%) | 3 (15.0%) |
| Homemaker | 4 (19.0%) | 3 (15.0%) |
| Working part‐time | 2 (9.5%) | 4 (20.0%) |
| On disability | 1 (4.8%) | 1 (5.0%) |
| Other | 1 (4.8%)i | 1 (5.0%)j |
| Splenectomy status | ||
| Splenectomizedi | 18 (85.7%) | 18 (90.0%) |
| Not splenectomizedl | 3 (14.3%) | 2 (10.0%) |
| Transfusion statusk | ||
| Transfusion independent | 16 (76.2%) | 12 (60.0%) |
| Transfusion dependent | 5 (23.8%) | 8 (40.0%) |
Race/ethnicity data not collected in certain countries due to local privacy laws or because it was not relevant (ie, Amish status).
One participant felt uncomfortable providing this information and declined to answer.
In the Netherlands, this is equivalent to lower or pre‐vocational education (standard education until the age of 12‐16).
In the Netherlands, this includes a Master's degree and higher (age ≥ 18).
In the Netherlands, this is equivalent to higher vocational education (age ≥ 18).
In the Netherlands, this is equivalent to secondary vocational education (ages 14‐18) or higher secondary education (ages 12‐18).
Participants could select more than one work status.
In Germany, this option was also inclusive of scholar, visiting a professional school, education and training.
Other response was ‘medical leave’.
Other response was ‘self‐employed’.
Participant did not routinely require red blood cell (RBC) transfusions, but may occasionally require transfusion(s) for anemia as a result of a medical event (eg, viral infection, pregnancy). Typically defined as receiving ≤ 3 RBC units over prior 12 months.
Participant required ongoing regular (or fairly regular) RBC transfusions to manage anemia, typically defined as receiving >4‐5 transfusions within a 12‐month period.