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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. - PowerPoint PPT Presentation
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A Self-Navigated Educational Toolkit for Hematologic Cancer Patients, Caregivers, and
Family/Friends
Presented byDouglas 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 27709Phone 919-541-6495 e-mail drupert@rti.orgFax 919-990-8454
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
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
Information Needs Map
Needs differ by role and phase
Patients Caregivers Family / 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
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 10th grade reading level Difficulty understanding clinical vocabulary and statistics
Format / Accessibility Format preference varies — print, audio, Web, etc.
Challenges
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
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 Societywww.cancer.org
The Wellness Communitywww.thewellnesscommunity.org
For more information...
http://bloodcancerinfo.rti.org
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