PATIENT AND HEALTHCARE PROVIDER INVOLVEMENT IN THE DEVELOPMENT OF A PATIENT DECISION AID FOR THOSE WITH PREVIOUSLY TREATED CHRONIC LYMPHOCYTIC LEUKEMIA

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 available treatment options and are excellent candidates for SDM. The objective of this project is to develop an informational and patient-centered decision aid (PDA) that will enable SDM.

Methods:  The development process followed the International Patient Decision Aid Standards (IPDAS) model. Patients and HCPs were included in all stages of the PDA development. A multidisciplinary advisory committee was formed with four HCPs and one CLL patient to guide the development, evaluation, and implementation of the PDA. Interviews were conducted with five CLL patients and five HCPs to elicit their views on treatment options, decision determinants, desired PDA format, and patients’ desired role in decision-making.  Direct patient feedback was collected on the PDA.

Results: The advisory committee participated in five iterative cycles of feedback throughout the development process.  Interviews with patients showed that a wide variety of treatment options are presented to patients, and patients apply previous treatment experiences to later treatment decisions. In order of importance, patients identify efficacy, quality of life, dosing schedule, adverse effects, and cost as their primary decision determinants. Patients liked an online format, and want to be involved in decision-making.  Interviews with HCPs showed that HCPs tailor the discussion of treatment options based on patients’ disease characteristics. In order of importance, HCPs state that patients choose treatment based on quality of life, toxicity, efficacy, route of administration, time commitment, and cost. HCPs believe the PDA should be online and easily understandable. HCPs feel that patients want to be involved in treatment decision-making.  Direct patient feedback on the PDA was favorable, showing that patients found it helpful and informative. Based on patients’ suggestions, language was incorporated into the final PDA highlighting that each treatment is not right for every patient, and every patient responds differently. 

Conclusions:  Feedback from patients and HCPs involved in all phases of the development of an online PDA for previously treated CLL has been integrated into the final PDA.  This SDM tool has the potential to improve patient-physician communication, ensuring patients’ preferences and values are incorporated at the point of care.