Understanding the influence of co-design on distress, clinical decision making and disease self-management of cancer patients-as-partners

Cancer is regarded as a major worldwide burden. Patients diagnosed with cancer are at risk of multi-system complications despite the availability of cancer treatment options. Cancer patient distress has been linked to disease progression. Studies show that patient engagement strategies affect clinical decision making process and disease self-management; therefore, alleviate patient’s clinical outcomes. The optimal engagement method is the patient partnership model of care that integrates patient’s expertise into comprehensive co-design of healthcare system. This is the first study to investigate the impact of partnership with cancer patients on distress level. It also evaluates the cancer patient-as-partner experience, and assesses the influence of partnership model of care on clinical decision making process and disease self-management. It is a quantitative and quasi-experimental study that adopted partnership committee at a Lebanese hospital. A stratified random sampling approach was used, and data was collected by self-administered structured questionnaires. We utilized the standardized distress thermometer and Public and Patient Engagement Evaluation Tool. We recruited 100 Patient partners. PP characteristics had no significant association with partnership experience. Cancer patients as partners had optimal engagement experience in quality improvement project (Mean = 4; SD = 0.4). Participants ‘agreed’ to ‘strongly agreed’ (3.9 ± 0.5) (85.6% response frequency) that were satisfied with this engagement initiative and found it a good use of their time. The main partnership benefits were improved hospitalization experience and patient satisfaction (49%), patients’ ability to express their opinion (39%), distress relief (21%), hospital reputation enhancement and patient loyalty (21%). Almost half of PP reported no challenges faced (49%). Recommendations for improvement were training (19%), team dynamics management (12%), and proper time allocation (7%). Distress level post the implementation of partnership approach was significantly reduced (t = 12.57, p < 0.0001). This study highlights the importance of patient partnership and its ability to influence shared decision making preference [χ2(2) = 13.81, p = 0.025] and self-management practices index [F(3, 11.87) = 7.294, p = 0.005]. Research findings suggest that partnership model of care can shape the healthcare system into people-oriented culture that drive better patient clinical outcomes and high quality care. Further research is needed to explore diverse PP engagement methodologies and their effect on organizational growth and development

Cancer · Disease · Disease management · Distress · Self-management · Art Therapy and Mental Health · Clinical Psychology · Computer Science · Empathy and Medical Education · Medicine · Mental Health and Patient Involvement · Psychology · Internal Medicine