"It's Not Like My Old Life, But It's Still Freedom": An ACTION learning network mixed methods analysis of the adolescent ventricular assist device experience at home.

BACKGROUND

Pediatric patients supported with durable ventricular assist devices (VAD) are increasingly discharged home on device. Little is known about adolescent and young adult (AYA) experiences during this unique time. This study aims to further understand AYA VAD experience to improve supports and interventions upon discharge.

METHODS

An 8-domain, 34-item semi-structured interview guide was developed, informed by prior adult VAD interview, pediatric literature, and multidisciplinary VAD team review, including patient/family advocates. AYAs currently or recently discharged home on durable VAD at an ACTION site were approached. Two authors independently coded qualitative responses using a priori codes for thematic analysis. Inter-rater reliability was achieved.

RESULTS

Seventeen AYAs (M=17.40 years) completed semi-structured interviews. The majority were male (76%) and half were White race (53%). All were supported on HeartMate3, most commonly with underlying diagnosis of dilated cardiomyopathy (76%). Length of heart failure ranged from 2 weeks to 9 years prior to device implant. AYAs provided insights across several domains. Most common worries were emergency situations (82%), infection (71%), and bleeding (71%). All reported some limitations, including engagement with friends (71%), sports (59%), and freedom of movement (47%).

CONCLUSION

Significant life disruptions and coping challenges are prevalent among AYAs discharged home on VAD. Robust psychosocial supports are indicated, including access to multidisciplinary care providers who are aware of the intricacies of managing VAD outpatient. Given remarks from AYAs regarding importance of peer connection, results highlight AYA peer and caregiver support groups and online communities as future directions.