title: Evolving information priorities of hematologic cancer survivors, caregivers, and other relatives.
abstract: 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.
authors.affiliation: American Cancer Society, Atlanta, GA, USA. ted.gansler@cancer.org
authors.forename: Ted
authors.initials: T
authors.lastname: Gansler
authors.forename: James
authors.initials: J
authors.lastname: Kepner
authors.forename: Erika
authors.initials: E
authors.lastname: Willacy
authors.forename: Cindy
authors.initials: C
authors.lastname: Soloe
authors.forename: Douglas
authors.initials: D
authors.lastname: Rupert
authors.forename: Meredith
authors.initials: M
authors.lastname: Jarblum
authors.forename: David
authors.initials: D
authors.lastname: Driscoll
authors.forename: Alex
authors.initials: A
authors.lastname: Orr
authors.forename: Tania
authors.initials: T
authors.lastname: Fitzgerald
authors.forename: Angelina
authors.initials: A
authors.lastname: Esparza
mesh_terms: 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