Long-Term Follow-Up of Patients With Ventilator-Dependent High Tetraplegia Managed With Diaphragmatic Pacing Systems

Objective: To explore participants’ experiences after implantation of a diaphragmatic pacing system (DPS). Design: Cross-sectional, observational study using self-report questionnaires. Setting: Participants were recruited from 6 Spinal Cord Injury Model System centers across the United States (Craig Hospital, CO; Jefferson/Magee Rehabilitation Hospital, PA; Kessler Rehabilitation Center, NJ; University of Miami, FL; The Shirly Ryan Ability Lab, IL; Shepherd Center, GA). Interventions: Not applicable. Participants: Men and women (N=28) with tetraplegia were enrolled in the study between November 2012 and January 2015. Main Outcome Measures: Participants completed self-report questionnaires focused on their DPS usage and mechanical ventilation, as well as their experiences and satisfaction with the DPS. Results: DPS is a well-tolerated and highly successful device to help individuals living with spinal cord injury who are dependent on ventilators achieve negative pressure, ventilator-free breathing. A small percentage of participants reported complications, including broken pacing wires and surgery to replace or reposition wires. Conclusions: This study provides insight into the usage patterns of DPS and both the potential negative and positive effects that DPS can have on the life of the user. Knowledge gained from this study can provide a foundation for further discussion about the benefits and potential risks of using a DPS to inform an individual's decision to pursue a DPS implant.