Healthcare Service Re-Design

Multistakeholder Recommendations for Supporting Patients

and Families Transitioning From Paediatric to Adult

Congenital Heart Disease Care

Study aims: Existing Congenital Heart Disease (CHD) transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences.

What we did: We engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops.

What we found: Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones’ life. The health care team should provide this information and education. Peer support should be offered when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person.

Putting patient value first: Using a modified nominal group

technique for the implementation of enhanced recovery

after cardiac surgery recommendations

Study aims: To explore, from a patient and caregiver perspective, the priority of implementing the Enhanced Recovery After Cardiac Surgery (ERAS-CS) guidelines to optimize the care of patients undergoing cardiac surgery.

What we did: Five patients who had undergone cardiac surgery and two caregivers ranked ERAS-CS recommendations within 3 time points (pre-operative, intra-operative, and post-operative) and across 2 to 3 voting rounds. Final round rankings were used to determine relative priorities.

What we found: Patient engagement tools, surgical site infection reduction, and postoperative systematic delirium screening were the top-ranked ERAS-CS recommendations in the pre-operative, intra-operative, and post-operative time points, respectively. Exploring patient and caregiver priorities may provide important insights to guide the healthcare team with with developing and implementing clinical pathways.