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Evolving information priorities of hematologic cancer survivors, caregivers, and other relatives
Ted Gansler1, James Kepner, Erika Willacy
1American Cancer Society, Atlanta, GA, USA. ted.gansler@cancer.org
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.
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