“How are You Doing?”: Patient and Family Support Resources for Children on Ventricular Assist Device

Purpose While psychiatric morbidity is associated with poor outcomes in adults on ventricular assist device (VAD), psychiatric concerns are often under recognized in pediatric patients and families. To optimize mental health support of these groups, we sought to first assess the availability and utilization of ancillary services to patients and families within a large pediatric VAD network. Methods This was a descriptive cross-sectional survey of ACTION (Advanced Cardiac Therapies Improving Outcomes Network) centers. Because no applicable survey instrument exists, content experts within ACTION developed the survey. Questionnaires were distributed to 31 centers. Only one completed survey per center was included in the analysis. Descriptive statistics as well as response distributions (numbers and percentages) were calculated for key variables of interest. Results Between March and April 2019, data were collected from 24/31 (77%) centers. There were 28 completed responses (4 duplicates eliminated). Psychiatry and psychology services are available at 90% of centers with 57% of centers consulting one or both of these services for all patients unless declined by patient and family. One-third (35%) of centers consult these services only when mental health concerns are raised. Antidepressants are seldom used by centers (14%; 3/24) for pediatric VAD patients. Antidepressant use is guided by mental health specialists at the majority (82%) of centers. Other patient and family support resources available at participating centers include: palliative care (96%), family advisory council (55%), family resource center (70%), and parent support groups (37%). Interestingly, the practice of meeting parents of other VAD patients was reported by 66% of centers. Primary nursing assignments for pediatric VAD patients was reported to be “often” or “almost always” in only 35%, and 21% respectively. Conclusion Typical resources to patients and family are available but may be underutilized. This survey identifies targets for care standardization and process improvement to allow broader access to these resources, as well as implementation of novel parent/patient support approaches used at other ACTION centers.