Long-Term Follow-Up of Individuals with Ventilator Dependent High Tetraplegia Managed with Diaphragmatic Pacing Systems.

Abstract 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 six Spinal Cord Injury Model System (SCIMS) 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 Measure 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 people living with SCI 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 a person's decision to pursue a DPS implant.