Evolving information priorities of hematologic cancer survivors, caregivers, and other relatives.
Little is known about information priorities of people touched by hematologic cancers. We interviewed and surveyed 29 survivors/patients, 13 caregivers, and 19 non-caregiver relatives. Qualitative interviews indicated limited information describing topics other than specific cancer subtypes and treatment options. The survey exercise revealed the following priorities: at diagnosis, cancer types and treatment options; during initial treatment, treatment options and coping with side effects; after treatment, follow-up tests and long-term side effects; at remission/during maintenance treatment at relapse, treatment options and follow-up tests; for patients, cancer types and treatment options; for caregivers, future outlook and support; for non-caregivers, finances. Information priorities vary by role and over time.
Gansler
Ted
T
American Cancer Society, Atlanta, GA, USA. ted.gansler@cancer.org
Kepner
James
J
Willacy
Erika
E
Soloe
Cindy
C
Rupert
Douglas
D
Jarblum
Meredith
M
Driscoll
David
D
Orr
Alex
A
Fitzgerald
Tania
T
Esparza
Angelina
A
D000328:Adult; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D017028:Caregivers / Q000193:education*; D054626:Consumer Health Information / Q000639:trends*; D005190:Family; D006292:Health Priorities; D006295:Health Resources; D006801:Humans; D007938:Leukemia / Q000523:psychology*; D008223:Lymphoma / Q000523:psychology*; D008875:Middle Aged; D020380:Needs Assessment; D017741:Survivors; D055815:Young Adult