Lessons from the Lessons from the Breast Cancer InitiativeBreast Cancer Initiative

Karen Sepucha, Sandra Feibelmann, Sarah Hewitt

Health Decision Sciences Center

http://www.massgeneral.org/decisionsciences/

Breast Cancer SuiteBreast Cancer Suite

1.Ductal Carcinoma in situ

2.Early stage: local treatments

3.Early stage: systemic therapy

4.Breast reconstruction

5.Metastatic breast cancer

“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

Breast Cancer Initiative ’05-’12Breast Cancer Initiative ’05-’12

Offer up to 10 free copies of each program to providers

Annual follow up to track usage, barriers, strategies

Dissemination processDissemination process

2. Indicate interest

Request sample set and watch a program

2.

238/272 (85%)

3. Decide to adopt

Complete participant agreement form

3.

127/272 (46%)

4. Put into practice

Phone survey with new sites to determine usage

4.

80/272 (39%)

5. Sustain use

Annual mailed survey to track usage, barriers and resources

5.

66/272 (24%)

1.

272 sites

1. Generate awarenessMailed invitations to centers, presentations, publications

Program distribution to sites Program distribution to sites

0

1000

2000

3000

4000

5000

6000

1 2 3 4 5 6 7 8‘05 ‘07 ‘09 ‘11

Cumulative: ~6000

Annual: ~1000

Year

# de

cisi

on a

ids

Estimate reach ~1500 patients annually

What’s needed for success?What’s needed for success?

1. It’s better than the status quo

2. It’s compatible with existing organizational values, culture, and needs

3. It’s not difficult to use

4. It’s easy to pilot and use on limited basis

5. It’s easy for user (patients and providers) to see the impact

Rogers Diffusion of Innovations 1995

Who are the active sites?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)

Factors associated with useFactors 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

Easy for user to see impact?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%

Barriers to useBarriers to use

Lack of reliable way to identify patients

37%

Lack of time 22%

Too many educational materials 15%

Lack of clinician support 14%

Belief that patients do not want the DA

12%

Concerns about literacy 10%

What would make it easier?What would make it easier?

• Web-based versions (25%)

• Brochures for waiting rooms (15%)

• Training (SDM, implementation) (10%)

• Written in: “New surgeons”

Comments from nurses Comments from nurses

“We find the DVD's 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

Comments from doctorsComments 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 NJ

Chemotherapy & hormone therapy one is a bit too generalized. Those are two really different topics & perhaps should be separated out.

-- Medical oncologist, academic hospital NH

SummarySummary

• 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”!