Coaching Patients to Understand and Use Patient-Reported Outcome Data: Intervention Design and Evaluation
Background: Providing patients with information about their health and treatment options is an important part of the shared decision-making process, which can lead to care that best reflects patient needs, values, and preferences. Patient-reported outcomes (PROs) are regularly collected in clinical contexts and can be embedded in decision aids as patient-reported measures of health status. One example of a PRO-based decision aid is the Arthritis care through Shared Knowledge (A.S.K.) report, which provides patients with individual PRO data for decision-making about osteoarthritis care. Given that using data in decision-making is unfamiliar to many patients, support may be required to ensure these aids are utilized as intended. Objective: This paper describes how A.S.K coaching, a group education session, was designed to ensure patients understood the A.S.K. report, including their PRO scores, and how to use the information to inform clinical consultations. We present (a) quantitative evaluation results associated with attendance and self-assessment of learning and (b) qualitative evaluation results on motivation to attend, acceptability of the session format, and achievement of session goals. Methods: The virtual, one-hour session was designed and refined collaboratively with clinical experts and patient advisers. Patients in one arm of a pragmatic cluster-randomized trial evaluating the A.S.K. report were then invited to attend coaching. To understand the profile of attendees, sociodemographic and clinical data were compared with all participants invited to coaching (N=1545) and a patient-reported assessment of self-efficacy was collected on a subset (N=178). Additionally, a post-session survey was used to self-assess learning. Qualitative data were synthesized from semi-structured post-coaching interviews, paired pre-/post-coaching interviews, and free-text responses to a post-session survey. A qualitative descriptive approach was used for analysis. Results: Compared to non-attendees, patients reporting higher education, greater health literacy, Medicare insurance, and lower self-efficacy for managing treatments were more likely to attend A.S.K. coaching when invited. Participants’ self-assessment of learning showed improved understanding of current and projected symptoms and where to find additional osteoarthritis information. Qualitatively, patients reported attending to gain information that could benefit their treatment or to aid in research. The virtual, group format was generally described as acceptable, and the session goals related to report understanding, patient empowerment, appointment preparation, and additional resources were met. Suggestions for improvement, such as providing more opportunities for group interaction, were also provided. Conclusions: Results highlight the value of coaching as an intervention to help patients understand and use novel health information, including PRO symptom assessments, for decision-making. Given that it was well liked by patients, promoted greater understanding of the decision aid, and increased feelings of empowerment in preparing for a clinical consultation, A.S.K. Coaching appears to be a promising intervention to support patients in making decisions using a PRO-based decision aid.
