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APHA Scientific Session and Event Listing

David Driscoll, PhD, MPH¹, Cindy Soloe, MPH¹, Karen L. Bandel, MPH¹, Meredith Jarblum, MPH¹, Erika Willacy, MPH¹, Sean Squire, BA¹, Ted Gansler, MD², and James Kepner, PhD². (1) Health Promotion Research, RTI International, 3040 Cornwallis Road, Research Triangle Park, NC 27709, 919-541-6565, driscoll@rti.org, (2) American Cancer Society, 1599 Clifton Road NE, Atlanta, GA 30329

We conducted formative research to assess the information needs of patients with hematologic cancers (leukemia, lymphoma, multiple myeloma) and their family members throughout the continuum of diagnosis, treatment, and post-treatment. In addition, we created a catalogue of hematologic cancer information resources available through national patient advocacy and non-profit organizations. We then compared the information needs of those affected by hematologic cancers to our assessment of available resources in order to identify gaps or other opportunities to improve these resources. Our formative research consisted of 60 in-depth individual and group interviews with patients (n=29), family member caregivers (n=13), and family member non-caregivers (n=18). Participants were asked how information needs evolved during phases of the cancer experience (at diagnosis, during, and after treatment). At diagnosis, all segments wanted information regarding treatment options, risk factors, and causes. Patients also sought information about tests and life post-treatment, caregivers about prognosis, and non-caregivers about insurance and financial assistance. During treatment, all segments remained interested in treatment options. Caregivers were interested in side effects and prognosis from treatment, and non-caregivers in the patients' emotional needs at this phase. After completion of initial treatment, all audience segments remained interested in prognosis. Patients and caregivers sought information on treatment advances, long-term side effects, alternative therapies, and how to return to a “normal life.” Current hematologic cancer resources largely appear to address these needs with the exception of some caregiver information. We offer specific recommendations to improve resource accessibility, content, and formatting by phase and audience segment.

Learning Objectives:

• Assess the resources currently available to people seeking information on such hematologic cancers as leukemia, lymphoma, and multiple myeloma.
• Understand how phase of diagnosis/treatment influences informational preferences for patients, family members, and caregivers of hematologic cancers.
• Describe the implications of these findings for tailoring cancer communications.

Keywords: Cancer, Communication

Presenting author's disclosure statement:

Any relevant financial relationships? No