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

2. 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. 3 Phase I Activities 1) Information need interviews (n=61) by role and cancer phase 2) Existing resources inventory 230+ materials Topic, content, readability, format, etc. 3) Challenges to meeting information needs

4. 4 Information Needs Map Needs differ by role and phase PatientsCaregiversFamily / Friends Cancer type Treatment options Side effects Life post-treatment Plus... Talking with family and friends Financial support Support groups Long-term side effects Advanced cancer Plus... Helping caregivers Emotional support Financial support Finding a hospital Support groups Advanced cancer

5. 5 Existing Resource Inventory 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 10 th grade reading level Difficulty understanding clinical vocabulary and statistics Format / Accessibility Format preference varies — print, audio, Web, etc. Challenges

6. 6 Phase II Activities 1) Create new materials to address challenges 2) Toolkit development Integrate new materials and existing resources 3) Pre-test toolkit in one-on-one 60-minute interviews (n=99)  Materials – Topics, content, readability  Interface – Navigation, graphics, links

7. 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. 8 Toolkit Features Low-Literacy Structure Basic overview of topics / issues Average 8 th 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. 9 Toolkit Interface

10. 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. 11 Partnerships and Collaboration Toolkit Development American Cancer Society Toolkit Distribution / Evaluation American Cancer SocietyThe Wellness Community Resource Connections ACSTWCOther orgs.

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