RTI International is a trade name of Research Triangle Institute

1. A Self-Navigated Educational Toolkit for Hematologic Cancer Patients, Caregivers, and Family/FriendsPresented byDouglas Rupert, MPHRTI InternationalPresented at DCPC Hematologic Cancers Partners Meeting Atlanta, GA, May 15–16, 2008 3040 Cornwallis Road ■ P.O. Box 12194 ■ Research Triangle Park, NC 27709 Phone 919-541-6495 Fax 919-990-8454 e-mail drupert@rti.org RTI International is a trade name of Research Triangle Institute

2. Background / Project Goals • Phase I: Information Needs and Resources • Goal – Assess audience information needs • Goal – Inventory and assess existing resources • Phase II: Materials Development • Goal – Develop and test new materials • Goal – Connect individuals to existing information resources • Phase III: Evaluation

3. Phase I Activities • Information need interviews (n=61) by role and cancer phase • Existing resources inventory • 230+ materials • Topic, content, readability, format, etc. • Challenges to meeting information needs

4. Information Needs Map • Needs differ by role and phase

5. Existing Resource Inventory Challenges Limited Topics • Most materials focus on cancer type (37%) or treatment (75%) • Fewer resources for caregivers, family, friends (< 2%) Saturation • Desired basics, then more detailed materials Readability and Clinical Language • More than 90% of materials written at 10th grade reading level • Difficulty understanding clinical vocabulary and statistics Format / Accessibility • Format preference varies — print, audio, Web, etc.

6. Phase II Activities • Create new materials to address challenges • Toolkit development • Integrate new materials and existing resources • Pre-test toolkit in one-on-one 60-minute interviews (n=99) • Materials – Topics, content, readability • Interface – Navigation, graphics, links

7. Toolkit Features Format and Accessibility • Self-navigated CD-ROM • Used simple HTML software • Materials in PDF format — Print or save to computer Role / Phase Segmentation • Customized and segmented materials by role and phase

8. Toolkit Features Low-Literacy Structure • Basic overview of topics / issues • Average 8th grade reading level (Flesch-Kincaid) • Low density — Few medical terms, basic reasoning, no statistics Resource Links • Links to glossary and other materials within toolkit • Links to external resources for more detailed information American Cancer Society: www.cancer.org or call toll-free 1-800-ACS-2345 24 hours a day

9. Toolkit Interface

10. Evaluation and Sustainability (Phase III) • National distribution of 2,500+ toolkits via ACS, TWC, and RTI • Online / telephone survey (in progress) • Materials, interface, source, link usage, impact • Sustainability: • ACS warehouse • ACS Patient Navigator service • Information needs map • Toolkit approach

11. Partnerships and Collaboration Toolkit Development American Cancer Society Toolkit Distribution / Evaluation American Cancer Society The Wellness Community Resource Connections ACS TWC Other orgs.

12. Questions? Acknowledgements American Cancer Society www.cancer.org The Wellness Community www.thewellnesscommunity.org For more information... http://bloodcancerinfo.rti.org