PS 3-38 DEVELOPMENT AND BETA-TEST OF A CHRONIC LYMPHOCYTIC LEUKEMIA PATIENT DECISION AID

Tuesday, October 25, 2016
Bayshore Ballroom ABC, Lobby Level (Westin Bayshore Vancouver)
Poster Board # PS 3-38

Thomas Leblanc, MD1, David Rizzieri, MD1, Robert Wolf, PharmD2, Ellen Neylon, MSN3, Valerie Mayorga, PharmD4, Katie Deering, PharmD4 and Brad Schenkel, MS5, (1)Duke University Medical Center, Durham, NC, (2)Mayo Clinic, Rochester, MN, (3)Columbia University Medical Center, New York, NY, (4)EPI-Q, Inc., Oak Brook, IL, (5)Janssen Scientific Affairs, LLC, Horsham, PA
Purpose:  Shared decision-making (SDM) incorporates patients’ individual preferences and values into treatment decisions in collaboration with their healthcare providers (HCPs). Patients with previously-treated chronic lymphocytic leukemia (CLL) have multiple treatment options available and are candidates for SDM. The objective of this project was to develop an informational, patient-centered online patient decision aid (PDA) that enables patients, in collaboration with their HCP, to weigh available evidence along with patients’ individual preferences and values.

Methods:  The development and design process followed the International Patient Decision Aid Standards (IPDAS) model, including: use of a multidisciplinary advisory committee to guide the development and evaluation of the PDA, assessment of decisional needs through literature review and patient and HCP needs assessment interviews, alpha-testing with direct feedback from patients and HCPs, and beta-testing using eight patients and four physicians external to the development process. The beta-test evaluated the usability of the PDA, and assessed patient knowledge, expectations, values, decisional conflict and confidence in one’s ability to make decisions. For the beta-test, patients completed three surveys (at baseline, immediately after viewing the PDA, and two-weeks later) and physicians completed one survey immediately after viewing the PDA.

Results: In line with IPDAS, an online PDA with graphics and audio facilitated identification and inclusion of patients’ values and preferences in the decision-making process. In the beta-test, patients demonstrated increased knowledge (mean score on scale of 1-10, higher scores indicate higher level of knowledge; baseline: 7.8, immediate post-test: 8.5, two-week post-test: 8.9), decreased decisional conflict (mean score normalized to 100 points scale, lower scores reflect less conflict; baseline: 24, immediate post-test: 20, two-week post-test: 16), and scored the instruments positively for length, amount of information, lack of bias, and overall satisfaction. Overall, physicians thought the PDA would be helpful in the decision-making process, would facilitate an understanding of issues important to the patient, and was easy to use.

Conclusion: We developed a patient-friendly online PDA for patients with previously-treated CLL. Feedback from patients and HCPs was very positive, demonstrating improved patient knowledge and reduced decisional conflict. Guided by a well-documented and systematic development process, this SDM tool can complement other methodologies in decision-making and has the potential to improve patient-physician communication, ensuring patients’ preferences and values are meaningfully incorporated at the point of care.