Developing an implantable cardioverter defibrillator patient education program: preliminary findings of a knowledge translation project

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background The implantable cardioverter defibrillator (ICD) provides effective prevention of sudden cardiac death in select populations. Its impact on quality of life (QOL) is associated with mixed results because of treatment delivery, risks and potential complications. Studies have shown comprehensive education before implantation contributes to informed decision-making and improved QOL. Providing peer support and opportunity to obtain real-life experiences from individuals living with an ICD is pivotal to effective education. Joint leadership with patients is an effective strategy to meet these goals as part of a patient and family-centred approach to care. Purpose Our objective was to adapt this knowledge and design an education program co-led by clinicians and patient partners to provide information, support treatment decision, and facilitate patients’ adaptation to living well with an ICD. Methods Patient partners with previously implanted ICDs were recruited from a regional network matching volunteers with healthcare providers seeking to engage patients and families in quality care processes. A monthly 1-hour, in-person group education session was developed by the Heart Rhythm Program team. Potential and newly implanted patients from two tertiary sites were invited to attend sessions combining education led by the clinical team and facilitated discussion with the patient co-leads. Participants completed an evaluation questionnaire inclusive of open-ended and Likert scale questions developed by the team. Sessions were halted for three months at the onset of the Covid-19 pandemic but resumed solely using a video conferencing platform. Results Since implementation in November 2018, there have been 62 in-person attendees and 34 using a virtual videoconferencing platform (female 31%, median age 62 years). All participants who attended in-person reported finding the session helpful with positive comments regarding the ability to have specific questions addressed in an informal, non-stressful environment. Virtual attendees did not complete written evaluations but positive feedback was received regarding session content and satisfaction in the ability to participate virtually. The involvement and contributions of the patient partners were consistently described as the most valuable component. Findings were used in an iterative fashion to inform session format and content. Conclusion In the era of patient-centred care and shared decision-making, it is imperative to integrate effective strategies that forefront patient voices and leadership. Transitioning to a virtual method of delivery was highly successful and demonstrated the importance of continuing this knowledge translation project providing practice-ready recommendations to healthcare providers to help address the needs of patients living with an ICD.