# Presentation: 335847

## Tools to Support Knowledge-Based and Patient-Centered Medical Decisions 

- Karen Sepucha, PhD
- Health Decision Research Unit
- Massachusetts General Hospital

## Geographic variation

**A marker of the level of uncertainty and discretion in clinical decision making**

## Geographic Variation: Breast Cancer

*In**** ******Longview, TX****,** a patient is almost *_***3 times***_* more likely to have a mastectomy than in ****Fort Lauderdale, FL**** *

*A patient in ****Modesto, CA****** ****is *_***twice***_* as likely to have a mastectomy than in**** ******Santa Barbara, CA****** ***

*A patient in ****Sioux City, IA****** ****is *_***over 2.25 times ***_*more likely to have a mastectomy than in**** ******Iowa City, IA***

- Source: The Dartmouth Atlas of Health Care
- Copyright © 2000 Center for the Evaluative Clinical Sciences at Dartmouth Medical School

- Treatment depends on where you live and who you see...more than who you are and what you care about.

**Geographic Variation: Breast Cancer**

## What is the “right” rate?

**Notes:**
Hopkins has been ranked on US new world reports honor roll for 15 years as best hospital, ranked third in country for cancer treatment.

## What is the “right” rate?

- How important is it to keep your breast?

- Very
- Important

- Not
- Important

- 1

- 10

- Tina

- Viola

- Margie

- 1

- 10

- 1

- 10

- 1

- 10

## Quality of care

- Quality of care:
- “the degree to which health services for individuals and populations
- -**increase the likelihood of *****desired***** health outcomes** and
- -are **consistent with current professional knowledge**.”

## Challenges for Patients

- Misplaced urgency (Get this out right away!)
- Lack of Confidence (I’m not a doctor how can I possibly make this decision?)
- Overload (It’s too much information, Am I going to die?)
- Communication (I don’t know what questions to ask.)
- Role confusion (If it were (you) your wife...)
- Decisional conflict (I don’t know what to do...I keep flipping back and forth)
- Regret (Would’ve... could’ve... should’ve...)

## ...and Providers

- Work overload
- Retrieve, synthesize and present vast amount of clinical data
- Less time for follow-up discussions
- Limited training in communication and decision counseling
- Lack of system support to coordinate providers

## Where can we make a difference?

- Increase knowledge
- Create realistic expectations
- Clarify roles
- Minimize social pressure
- Minimize misplaced urgency (important vs emergency)

- Clarify goals and preferences
- Increase DM skills / self-confidence
- Facilitate communication about goals and preferences

**  ****Knowledge-based**

**Patient-centered**

## Patient Decision Aids (PtDAs)           adjuncts to counseling

- information: options, outcomes
- outcome probabilities
- values clarification
- patients’ stories
- guidance/coaching

*Cochrane Library*, 2003; Issue 2

## Impact of a Prostate Cancer Screening PtDA  

- Frosch et al  JGIM 2001

**Desire for participation increases**

**Choice of PSA Decreases**

## Decision Aids: Do they work?

- Cochrane collaborative systematic review of decision aids (updated 2003).
- 34 RCTs of decision aids for screening and treatment
- Topics include cancer, heart disease, back pain, benign uterine conditions, menopause, joint replacement, genetic testing, etc

**O’Connor et al 2003**

## Decision Aids: Significant Benefit

- Feasible & acceptable
- Help those who are uncertain at baseline make a choice
- Choices more likely to be based on:
- Better Knowledge
- More Realistic Expectations
- Clearer Values
- Better Communication

**O’Connor et al 2003**

## Breast Cancer Shared Decision Making Programs

- Early stage surgery
- Breast reconstruction
- DCIS
- Systemic therapy
- Metastatic disease

## <footer>

## √

**√**

**√**

## Decision Process: Resolving Decisional Conflict 

| Correct response (%) 
(n = 115) | Post video | Post consult |
| --- | --- | --- |
| 1. Survival rate | 100% | 96% |
| 2. Recurrence rates | 84% | 93% |
| 3. Recurrence likehood | 98% | 94% |
| 4. Urgency of decision | 94% | 98% |
| TOTAL (average) | 94% | 95% |

**How informed are patients?**

**NORRIS COTTON CANCER CENTER**
**DARTMOUTH HITCHCOCK MEDICAL CENTER**

## How well do choices reflect patients’ goals?

- Lumpectomy

- Mastectomy

**How important is it for you to **_**keep your breast**_**?**

**How well do choices reflect patients’ goals?**

**Notes:**
KATE

## How well do choices reflect patients’ goals?

- Lumpectomy

- Mastectomy

**How important is it for you to **_**remove your breast for peace of mind**_**?**

**How well do choices reflect patients’ goals?**

**Notes:**
KATE

## DHMC: Implementing hospital-wide

**  ****Center for Shared Decision Making**
** ****PtDAs for 20+ conditions; coaching **
**  ****Total program loans 1000+/quarter**
** ****Quality data posted on website**

## Three demonstration sites for breast cancer

**UCSF San Francisco, CA**

**Three demonstration sites for breast cancer**

**Notes:**
Skip

## Lessons Learned:

- Integrating decision aids into clinic flow:
- Is feasible and beneficial to both patients and providers
- Helps patients make informed, values-based decisions
- Helps achieve patient-centered care

## What is the generalizability of these results?

- 80% of cancer care is delivered in the community
- Would this work in other settings, without resources and with lower volume?
- Breast cancer initiative (joint venture Foundation for Informed Medical Decision Making and Health Dialog)

## Expanding to Community Sites 	

- Dissemination Model: Diffusion of Innovations (Rogers 1995)

**1. **
**Knowledge**

**5. **
**Confirmation**

**4. **
**Implement**

**3. **
**Decision**

**2. **
**Persuasion**

## Identified 40 sites...

High interest, and high follow through
Doctors are interested (~1/3 responses)

*Interviews with three more sites scheduled

- High interest, and high follow through
- Doctors are interested (~1/3 responses)
- *Interviews with three more sites scheduled

**Results for NH, VT and RI**

- 87% Requested samples

- 46% Signed agreement

- 31% gave out to patients*

- 29% using at one year*

- 100%
- Contacted

**Uzogara, Sepucha SMDM 2007**

## Summary

- Participant agreements: 70+ sites
- Estimated reach: 2500+ patients/year
- Providers can and do use free copies, with limited support
- Future issues: How can we shorten the cycle? Will we reach a “tipping point”? Is it sustainable?