2019 May

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ACTION Leadership Meeting Update: The ACTION Learning Network had a successful leadership meeting on May 19-20, 2019, in which 25 network leaders attended to discuss strategic planning, data reporting, and new projects. Some of the topics and initiatives discussed include “Friends in ACTION,” our patient/family and clinician education platform, discharge intervention planning, QI proposals and data planning, as well as Heart Failure and Waitlist Outcomes projects, among others.

Discharge QI Project Update: The next quality improvement project is focusing on increasing the percentage of VAD patients discharged and to decrease time to discharge.  As a network, we will be testing two initial interventions; development and spread of 1.) ACTION discharge checklist/care management plan and 2.) patient/family education modules and materials.  

Patient Reported Outcomes Committee Survey Results: To better understand existing approaches to patient/family support at ACTION sites, an 8-question survey was distributed. Responses were received from 24/33 individual sites (73%); only one response per site was accepted. Most centers (22/24) have access to both psychiatry and psychology services (22/24; 92%). Most often mental health services are involved pre-implant (14/24; 58%), though 9/24 sites involve them only when concerns are raised. Antidepressants are used by all sites, though reported as “seldom” used at 3. Mental health specialists often guide antidepressant use. Two sites use antidepressants empirically for adolescents/young adults on VADs. Primary nursing is a strategy used at most sites though: 13/24 (54%) of sites use primary nursing “often/almost always” for VAD patients. Three sites report never using a primary nursing structure. For procedural comfort, iPads and Child Life are used at all sites with selective use of opioids and sedatives. Some centers report involving the patient in dressing changes to reduce distress. Music therapy was also reported as useful. To promote sleep, melatonin and care clustering are often used. Only 2 sites provide written information regarding sleep to parents/patients. Two sites use psychology/psychiatry to assist with sleep issues. All sites have access to palliative care, with the majority also providing: a Family Advisory Council (13/24; 54%), a Family Resource Center (18/24; 75%), and opportunities to meet parents of other VAD patients (17/24;71%). Parent support groups exist at 10/24 sites (42%) though not all are cardiac-specific groups. These findings, in combination with prior input from patients/families regarding specific stressors, will shape future interventions.

OTHER MAY 2019 NEWS:

Please welcome our 2 new sites; Loma Linda University Children's Hospital & Yale New Haven Children’s Hospital!

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