DEVELOPMENT OF AN ONLINE PATIENT DECISION AID FOR PREVIOUSLY TREATED CHRONIC LYMPHOCYTIC LEUKEMIA

Purpose:  There are multiple treatment options available for patients with previously treated chronic lymphocytic leukemia (CLL). The objective of this project was to develop an informational, patient-centered decision aid that will enable patients, in collaboration with their healthcare provider (HCP), to weigh available evidence along with patients’ individual preferences and values. The decision aid includes information based upon evidence-based literature and is designed to be accessed online in the physician’s office or at home. The decision aid discusses, compares, and presents evidence about the risks and benefits of different treatment options available to previously treated CLL patients. To help patients understand what is important to them as they consider available treatment options, the decision aid includes simple questions that assess patients’ values and preferences.

Methods:  The development and design process follows the International Patient Decision Aid Standards (IPDAS) model, including: 1) identification and description of the treatment decision for patients with previously treated CLL; 2) formation of a multidisciplinary advisory committee with four  HCPs and one patient with CLL to advise on the development, evaluation, and implementation of the decision aid; 3) assessment of decisional needs through literature review and needs assessment interviews with five patients and five practicing HCPs to elicit their views on patients’ information and decision support needs in previously treated CLL; 4) determination of online format designed for integration into clinical practice; 5) review and synthesis of clinical evidence relevant to the treatment decision and options for previously treated CLL; 6) development of the draft decision aid with five iterative cycles of feedback from HCPs and patients; 7) alpha testing with direct feedback from patients and HCPs; and, 8) beta testing in real life conditions, using patients and HCPs external to the development process, evaluating the usability of the decision aid, and assessing patient knowledge, expectations, values, treatment choice, decisional conflict and confidence in one’s ability to make decisions.

Results: In line with IPDAS standards, a patient-friendly online decision aid was developed with graphics and audio for patients with previously treated CLL to facilitate identification and inclusion of patients’ values and preferences in the decision-making process.

Conclusions: Guided by a well-documented and systematic development process, the decision aid will be a valuable shared decision-making tool for patients with previously treated CLL and their healthcare provider.