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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 Introduction
Method, cont.
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 Preliminary Results
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 Situation
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 Conclusion
Open to Options provides individual treatment decision Consultation
support to blood cancer patients in the early stages of To demonstrate how community-centered education, Thalidomide?: What are the side effects of thalidomide? Research Implications
outreach and decision support services can enhance treatment decision making among those living with blood Objectives
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 Patient timeline
gourmet cooking, feeding wild birds, "love doing laundry." - High levels of decision self-efficacy; and Clinical Implications
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 Evaluation
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? Decision
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.
(#DP07-709 U58/DP001111)
* Note: SCOPED note has been de-identified and edited for teaching
purposes.

Source: http://www.enacct.org/sites/default/files/APOS%202009_OtO%20poster%2001-28-09.pdf