Qualitative modification and development of patient- and caregiver-reported outcome measures for iron chelation therapy

Table 1 Demographic and clinical characteristics of patients, caregivers, and children of caregivers

	Patients (N = 11)	Caregivers (N = 10)	Children of Caregivers (N = 10)
Age, mean (range), y	43.25 (14.12–80.94)	47.63 (34.96–65.13)	8.90 (1.56–16.81)
Sex, n (%)
Male	8 (72.73)	1 (10.00)	4 (40.00)
Female	3 (27.27)	9 (90.00)	6 (60.00)
Relationship to child, n (%)
Mother	N/A	3 (30.00)	N/A
Father	N/A	1 (10.00)	N/A
Stepmother	N/A	1 (10.00)	N/A
Aunt	N/A	3 (30.00)	N/A
Grandparent	N/A	2 (20.00)	N/A
Race, n (%)
Asian	1 (9.09)	1 (10.00)	2 (20.00)
Black or African American	7 (63.64)	8 (80.00)	8 (80.00)
White	3 (27.27)	1 (10.00)	0 (0.00)
Highest education level, n (%)
High school or GED or less	5 (45.45)	0 (0.00)	N/A
College/university or Some college/certification	5 (45.45)	7 (70.00)	N/A
Graduate or Other	1 (9.09)	3 (30.00)	N/A
Current school grade, n (%)
No School or Preschool	N/A	N/A	2 (20.00)
Grade 1-Grade 5	N/A	N/A	7 (70.00)
Other	N/A	N/A	1 (10.00)
Employment status^a, n (%)
Employed full-time or part-time	2 (18.18)	7 (70.00)	N/A
Unemployed or Retired	5 (45.45)	2 (20.00)	N/A
Student only or Other	4 (36.36)	1 (10.00)	N/A
Condition/diagnosis, n (%)
MDS	3 (27.27)	N/A	0 (0.00)
TDA-Sickle cell disease	5 (45.45)	N/A	8 (80.00)
TDA-Aplastic anemia	1 (9.09)	N/A	0 (0.00)
TDA-Myelofibrosis	1 (9.09)	N/A	0 (0.00)
TDA-Thalassemia	1 (9.09)	N/A	2 (20.00)
Years with diagnosis^b, mean (range)	11.67 (0.63–25.08)	N/A	7.15 (1.00–14.47)

Abbreviations: GED, general educational development; MDS, myelodysplastic syndrome; N/A, not applicable; TDA, transfusion-dependent anemias
^aEmployment status - “homemaker” was counted as “other”
^bYears with diagnosis - (A) For those listing only the year of diagnosis, time with diagnosis was calculated from January 1 of the given year; (B) For those listing only the year and month of diagnosis, time with diagnosis was calculated from the first day of the given month; (C) For those listing only the year and/or year and month of diagnosis, where imputing as per notes A and B was not possible (ie, imputation would result in child’s diagnosis date occurring before the child’s date of birth), the child’s date of birth was imputed as the date of diagnosis

ISSN: 1477-7525