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

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.