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Open to Options (formerly ENACCTing Wellness)
A Pilot Program Providing Treatment Decision Support to Newly
Diagnosed Blood Cancer Patients
Miller MF1, Blakeney N2, Taylor J1, Weiss E1, Crawford B3, Coyne K4, Stauffer M5, Belkora J6, Michaels M2, Golant M1
1The Wellness Community, 2ENACCT, 3TWC Cincinnati, 4TWC Philadelphia, 5TWC San Francisco/East Bay, 6University of California, San Francisco
What Patients Say
Why decision support?
A unique partnership
Evaluation study design
“The counseling session helped me realize that no
question was unimportant but it also pushed me to ask
Cancer patients face numerous decisions regarding their
the doctor. In fact, I had a difficult time waiting for my
treatment options and course of care.
- In person pre- and post-counseling session
next scheduled appointment that I made an appointment
Decision support at the time of diagnosis has been
earlier to meet a doctor to present questions. I took a
shown to increase patient knowledge and improve other
tape recorder, family members and an extensive sheet of
measures of decision quality such as decisional conflict.
- Question self-efficacy; decision regret
questions…all helpful. The program served as a catalyst
for me to not wait for answers but to actively seek them
Decision support and The Wellness Community
- Distress thermometer; anxiety; HRQOL (SF-12)
Historically, programs at TWC have been delivered in the
international non-profit organization dedicated to
form of support groups of about 10 participants, or
educational programs that include from 20-100 patients
“Originally I thought the counseling service would provide
and caregivers. However, in the early stages of a cancer
Number of Patients Counseled by Site
information related to various option advantages and
diagnosis, we know that patients value individual
disadvantages, risks, etc., but what was provided was
assistance as they explore treatment options.
still helpful in organizing my thoughts and questions
Thus, there is a need to investigate models of individual
related to making a treatment regimen.”
support that are consistent with TWC’s Patient ActiveTM
The SCOPED model
Concept, and that can be integrated within TWC’s current
Situation, Choices, Objectives, People, Evaluation, Decision
Note: Each patient has attended only 1 session.
The Agency for Healthcare Research and Quality has recognized SCOPED decision support
SCOPED note example* (abridged)
interventions as having a “strong” basis in evidence
and includes interventions based on this model in its
I've experienced bone pain for 6 mo-1 yr. Fractured my left
humerus. I've been in the hospital for 2 weeks. I was diagnosed
with Multiple Myeloma while in the hospital. Currently taking
Open to Options provides individual treatment decision
support to blood cancer patients in the early stages of
To demonstrate how community-centered education,
Thalidomide?: What are the side effects of thalidomide?
outreach and decision support services can enhance
treatment decision making among those living with blood
If demonstrated effective, Open to Options may be a
cancers in three communities nationwide.
First priority: Long-term survival - desire to be with future
valuable intervention for improving decision quality and
reducing distress and anxiety among blood cancer
Second priority: Get back to former activities - gardening, travel,
To assure decision quality according to appropriate
patients facing a new diagnosis and making a treatment
gourmet cooking, feeding wild birds, "love doing laundry."
- High levels of decision self-efficacy; and
Children, husband (the only person who will really help me
decide), oncologist, possible second opinion, orthopedist.
Consistent with TWC’s Patient ActiveTM Concept, this
Can I meet someone who has had this type of treatment? What
program is designed to empower patients to ask the
To reduce general emotional distress and anxiety.
questions of their health care providers that are most
important for their immediate medical and personal need
Bone Marrow Transplant: How does a bone marrow transplant
and to better partner with their health care team.
work? What are the risks and benefits of using own marrow
Thalidomide: What are the side effects of thalidomide?
Overall: Which option offers the best hope of long-term
survival? How will treatments affect my activity level?
Centers for Disease Control and Prevention
* Counselor activity includes administering the patient evaluation.
I'd like to make this decision with my doctor after he addresses
† In person; by phone, but only if necessary.
§ Allow for 1 ½ hour per patient visit.
: SCOPED note has been de-identified and edited for teaching
Euro Crafts 21: Developing competence for sustainable management in European handicraft Translation of Module S4: Marketing Concept Vienna, December 2009 Source: Westdeutscher Handwerkskammertag (Ed.): CD-ROM: Sustainable Management in crafts enterprises. A manual for the implementation of a qualification and consulting concept for consultants and teachers in the crafts sector.
There is no consensus as to the perfect immunosuppressive regimen. This is emphasized by the wide variation in immunosuppressive protocols used by different centers in Europe and US. Protocols are important because they create some uniformity in treatment for patients, they allow each center to become familiar with particular combinations of immunosuppressive drugs and they allow for bette