Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article

Degree

Master of Science

Program

Health Promotion

Supervisor

Joy C. MacDermid

Abstract

In recent years there has been a growing interest by stakeholders in engaging patients in research where the preferences/ expectations and input of patients are important in the conceptualization and execution of the research projects/medical procedures. Patients are becoming more informed, empowered and active partners in their healthcare, and are seeking to be more engaged in the research engagement continuum The purpose of this thesis was to 1) assess and identify the facilitators and significant barriers of patients' engagement in musculoskeletal research; and document factors that facilitate patient engagement in musculoskeletal research. 2) identify and synthesize evidence that determines the extent to which expectations are predictive of postoperative outcomes in patients undergoing total shoulder, elbow, or radial head replacement and metacarpophalangeal joint arthroplasty. We conducted a literature review on patient engagement in research and a systematic review on patient expectations in musculoskeletal arthroplasty. Although there was a limited but significant association between patients’ preoperative expectations and postoperative outcomes for total shoulder arthroplasty yet we found in both studies that patients’ beliefs/self-efficacy expectations, barriers and potential benefits according to Health Belief Model influenced patients’ engagement in health research and the outcomes on total joint arthroplasty. We also found that lack of awareness of research was a major barrier to patient engagement in research Only a few (10.8%) have ever been involved in the research engagement continuum as team members. This finding was very important because it highlights a major gap in the implementation of patient engagement in the research. Several other barriers were identified in the study such as cost of transportation to the research site, work commitment, and patients’ concerns about the potential effect of research on their health. The participants also expressed their preferences and some factors that could facilitate their engagement in research. One key message from this thesis was that given the fact that patients' knowledge and participation are important for participation in research, future research initiatives should be flexible enough to accommodate patients’ preferences and expectations.

Summary for Lay Audience

Patient engagement in health research is the process of involving people who have personal experiences of a health issue and their family, friends, and caregivers in the research process - not just as study subjects but as partners, helpers in planning, doing and spreading the result of the research. There is a growing interest in patient engagement in research because it ensures relevant topics and outcomes to patients are selected for study, which has increased the number of patients enrolling in research and also helps the researchers in getting funding. Increased interest in patient engagement comes at a time when healthcare spending is steadily rising in Canada. Our aim in this research is to assess the barriers (hindrance) and facilitators (enablers) of patients in taking part in upper limb musculoskeletal research (research relating to muscles and bones) and find out the extent to which expectations influence postoperative outcomes in patients undergoing total shoulder, elbow, joint arthroplasty. We found here was a limited but significant association between patients’ preoperative expectations and postoperative outcomes for total shoulder arthroplasty. We also found that lack of awareness of research was a major barrier to patient engagement in research. Only a few (10.8%) have ever been involved in the research process as team members. This finding was very important because it highlights a major gap in the implementation of patient engagement in the research. One important message from this thesis was that given the fact that patients' knowledge and participation are important for participation in research, future research initiatives should be flexible enough to accommodate patients’ preferences and expectations.

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