Development of an Online Patient Decision Aid for Previously Treated Mantle Cell Lymphoma

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 mantle cell lymphoma (MCL) have multiple available treatment options and are candidates for SDM. The objective of this project was to develop an informational, patient-centered decision aid that will enable patients, in collaboration with their HCP, to weigh available evidence along with patients' individual preferences and values.

Methods: The evidence-based decision aid is designed to be accessed online in the physician's office or at home. The decision aid discusses and compares evidence about the risks and benefits of different treatment options available to previously treated MCL 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. 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 MCL; 2) formation of a multidisciplinary advisory committee with four HCPs and one patient with MCL 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 MCL; 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 MCL; 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: Needs assessment interviews with patients showed that patients understand that their disease will relapse and apply previous treatment experiences to later treatment decisions. Through our interviews we found that patients look for information online, and feel that most information online about MCL is incorrect and/or outdated. In order of importance, patients identify efficacy, adverse effects, cost, and impact on daily life as their primary decision determinants. Patients like an online format and want to be involved in decision-making. In the HCPs' needs assessment interviews, HCPs stated that some patients may require significant education on treatment options due to the rapidly changing treatment landscape and long remission periods. In order of importance, HCPs feel patients choose treatment based on cost, efficacy, and impact on daily life. HCPs believe an online decision aid would work for this patient population and that patients want to be involved in treatment decision-making.

Conclusion: A patient-friendly online decision aid with graphics and audio was developed for patients with previously treated MCL. Feedback from patients and HCPs has been integrated into the decision aid. 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 incorporated at the point of care.