Developing and piloting an instrument to prioritize the worries of patients with acute myeloid leukemia

Figures & data

Figure 1 Project governance.

Figure 2 Key stages of the study.

Abbreviation: FDA, US Food and Drug Administration.

Table 1 Worry domains and items

Domains	Worry items
Decision making	Knowing about all of my treatment options Choosing a treatment in a short amount of time Having enough information about my disease
Treatment delivery	My doctors understanding my wants and needs Having access to the best possible medical care How much my medical care would cost
Physical impacts	Short-term side effects outweighing the benefits Spending a significant amount of time in hospital Returning to the activities that are important to me
Psychosocial effects	Understanding my chances of survival Coping with the emotional demands of my situation Becoming a burden to those who care for me

Figure 3 Worries about living with AML (best–worst score).

Abbreviation: AML, acute myeloid leukemia.

Figure 4 Example of a best–worst scaling choice task.

Table 2 Pilot testing participant characteristics

Characteristics	n	%
Total participants	25	100
Relation to AML
Patient	18	72
Caregiver	7	28
Sex
Male	9	36
Female	16	64
Mean age, years (range)
50.84 (24–81)
Race/ethnicity
White/Caucasian	19	76
Black/African American	2	8
Hispanic	4	16
Education
High school/GED	1	4
Some college	1	4
College or higher	21	84
Annual household income ($US)
>$75,000	17	68
Between $25,000 and $74,999	7	28
<$25,000	1	4
Past treatment (select all that apply)
Chemotherapy	24	96
Radiation	8	32
Targeted therapy	3	12
Immunotherapy	2	8
Allogeneic stem cell transplant	13	52
Autologous stem cell transplant	1	4
Palliative care	1	4
Clinical trial
Have participated	13	52

Abbreviations: AML, acute myeloid leukemia; GED, general educational development.