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Lessons from the Breast Cancer Initiative


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2012 Summer Medical Editors Meeting: Karen Sepucha, PhD

Published in: Health & Medicine
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Lessons from the Breast Cancer Initiative

  1. 1. Lessons from theBreast Cancer Initiative Karen Sepucha, Sandra Feibelmann, Sarah Hewitt Health Decision Sciences Center
  2. 2. Breast Cancer Suite 1. Ductal Carcinoma in situ 2. Early stage: local treatments 3. Early stage: systemic therapy 4. Breast reconstruction 5. Metastatic breast cancer
  3. 3. “The graveyard of failed products is littered with things people should have wanted—if only they could have been convinced that those things were good for them”Christensen et al Innovators’ Prescription 2009, p.16
  4. 4. Breast Cancer Initiative ’05-’12Offer up to 10 free copies of eachprogram to providersAnnual follow up to track usage,barriers, strategies
  5. 5. Dissemination process1. Generate awareness 3. Decide to adopt 5. Sustain use Mailed invitations to centers, Complete participant Annual mailed survey to presentations, publications agreement form track usage, barriers and resources 1. 2. 3. 4. 5. 272 sites 238/272 127/272 80/272 66/272 (85%) (46%) (39%) (24%) 2. Indicate interest 4. Put into practice Request sample set and Phone survey with new watch a program sites to determine usage
  6. 6. Program distribution to sites 6000 5000 Cumulative: ~6000 # decision aids 4000 Cumulative 3000 # programs 2000 1000 Annual: ~1000 0 1 ‘05 2 3 ‘07 4 5 ‘09 6 ‘117 8 Year Estimate reach ~1500 patients annually
  7. 7. What’s needed for success?1. It’s better than the status quo2. It’s compatible with existing organizational values, culture, and needs3. It’s not difficult to use4. It’s easy to pilot and use on limited basis5. It’s easy for user (patients and providers) to see the impact Rogers Diffusion of Innovations 1995
  8. 8. Who are the active sites?• Type of practice – Community health center (30%) – Private/group practice (24%) – Other (support group, non profit) (22%) – Hospital based (16%) – Academic center (8%)• Main contact (95% female) – Nurse (38%) – Other (e.g. social worker, breast navigator) (38%) – Doctor (24%)• Annual patient volume median=60 (IQ 30, 270)
  9. 9. Factors associated with use• Is this different from status quo? – Watch a program (82% users vs. 56% non users, p=.10)• Fit with culture? – Have clinician support (74% users vs. 33% non users, p=.02)• Not difficult to use? (0=not at all, 10=very difficult) – Mean rating 4.6 (SD 3.4) users vs. 5.6 (3.6) non users, p=0.25• Easy to pilot and use on limited basis? – Multiple methods used (given out by doc/nurse, resource center, support groups) Feibelmann et al 2011
  10. 10. Easy for user to see impact?• Providers: How helpful are programs for patients? (0=not at all, 10=very) – Mean rating 7.5 (2.1) users vs. 4.8 (3.3) non users, p=0.001• Patients: – Overall rating: 82.5% very good or excellent – Someone else watch with them: 48%
  11. 11. Barriers to useLack of reliable way to identify 37%patientsLack of time 22%Too many educational materials 15%Lack of clinician support 14%Belief that patients do not want the 12%DAConcerns about literacy 10%
  12. 12. What would make it easier?• Web-based versions (25%)• Brochures for waiting rooms (15%)• Training (SDM, implementation) (10%)• Written in: “New surgeons”
  13. 13. Comments from nurses“We find the DVDs extremely helpful…this is the information one needs to be well informed to make an educated decision… We (the RNs) are available to answer questions, provide any additional information and support and guide the patient through the entire process/continuum. Thank you!!” - Patient care coordinator & nurse, hospital in western MA“The DVDs are very helpful and well received by patients that view them. However, some surgeons prefer to provide the info to patients themselves; they like to control the information. They have not taken the time to fully review the DVDs themselves and they do not trust that we can provide unbiased information to their patients. Always a work in progress!” - Breast health navigator & nurse, hospital in OH
  14. 14. Comments from doctors“These are extremely helpful. Relieves patient of unknown; familiarizes patient with medical terms and their meaning. Patients ask more relevant questions after viewing the videos. Patients make their decision easier and faster after having viewed the videos.” – General surgeon, private practice in southern CA“I 100% love using the Recon DVD with my patients… it provides an excellent overview. Patients come with informed ideas - some of which match perfectly with their clinical scenarios. But even when a patient is not a good candidate for what she believes is her #1 choice prior to the visit, we are able to work together easier to mutually develop a treatment plan.” – Plastic surgeon, private practice in northern NJChemotherapy & hormone therapy one is a bit too generalized. Those are two really different topics & perhaps should be separated out. -- Medical oncologist, academic hospital NH
  15. 15. Summary• Many providers are interested (not just academic centers)• About 1/4 implement with little to no help• Many have difficulties getting to all eligible patients• Lots of “Thank Yous”!