Rationalizing the Influence of Co-Design on Distress, Clinical Decision-Making and Disease Self-Management of Cancer Patients-as-Partners: A Quasi-Experimental Study

Abstract

Introduction: Cancer is regarded as a major worldwide burden. Patient distress has been linked to disease progression. Studies show that engagement strategies affect clinical decision-making and patient outcomes. The optimal engagement method is a partnership that integrates the patient's expertise into the comprehensive co-design of the healthcare system. Objectives: This is the first study to investigate cancer patient-as-partner experience and its impact on distress levels, decision-making and self-management. Methods: It is a quantitative and quasi-experimental study that adopted a partnership committee at a Lebanese hospital. A stratified random sampling approach was used, and data were collected by self-administered questionnaires. We utilized the standardized distress thermometer and PPEET. Results: We recruited 100 patient partners. Cancer patients-as-partners had optimal engagement experience in QI projects (mean = 4; SD = 0.4). The main partnership benefit was improved hospitalization experience (49%). Almost half of PP reported no challenges faced (49%). Recommendations for improvement were training (19%), team dynamics management (12%) and proper time allocation (7%). The distress level post-partnership was significantly reduced (t = 12.57, p < 0.0001). This study highlights the importance of partnership and ‎its ability to influence shared decision-making preference [χ2(2) = 13.81, p = 0.025] and self-management practices [F(3, 11.87) = 7.294, p = 0.005]. Conclusion: Research findings suggest that partners from disadvantaged groups can have optimal partnership experience. A partnership model of care can shape the healthcare system into a people-oriented culture. Further research is needed to explore diverse PP engagement methodologies and their effect on organizational development. Patient or Public Contribution: Patients and family members were engaged in the co-design of the study methodology, especially the modification of a research instrument. Patient partners with lived experience were involved in the patient partnership committee as core members to improve healthcare system design and evaluation.