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

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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

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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

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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

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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

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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

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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

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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

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Toolkit Interface

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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

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Partnerships and Collaboration

Toolkit Development

American Cancer Society

Toolkit Distribution / Evaluation

American Cancer Society The Wellness Community

Resource Connections

ACS TWC Other orgs.

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Questions?

Acknowledgements

American Cancer Societywww.cancer.org

The Wellness Communitywww.thewellnesscommunity.org

For more information...

http://bloodcancerinfo.rti.org