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.