Hospital Care Structure and Self- Care Education Processes of Ventricular Assist Device Programs: A National Study S. Brian Widmar PhD, RN, ACNP-BC Ann F. Minnick PhD, RN, FAAN Mary S. Dietrich PhD 2012 State of the Science Congress on Nursing Research 1

Acknowledgements Use of the VU REDCap Survey service Grant support: UL1 TR from NCATS/NIH 2

Significance: Why VAD Self-Care Processes? ↑prevalence and incidence of CHF 2007: 5.2 million, 550,000 annually 2011: 6 million; 670,000 annually Increasing indications for VAD therapy VAD has emerged as HF therapy – 2007: 208 patients 2011: 1,450 patients 3

Why Self-Care Processes VAD care is complicated, continually demanding and intimidating to patients 4

Why Self-Care Processes VAD is an exemplar of new technology requiring self-care processes – what is learned about VAD may help with other technologies. Professional experience with different methods of VAD education 5

Gaps and Unknowns How VAD patients learn self-care How self-care education is provided; resource utilization Extent to which type, method, and/or provider of self-care education influences outcomes 6

Aim To describe care structures and self-care education processes used in VAD hospitals 7

Methods and Analyses AIM: To describe care structures and self-care education processes used in VAD hospitals – Concepts: Definitions and measurement – Questionnaire development and testing – AHA Data – Human Subjects Protection 8

Administration Sources of VAD Hospital Addresses Inclusion criteria 111 eligible 3 cycles, 3 weeks apart Paper or internet option 9

Methods AIM: To describe care structures and self-care education processes used in VAD hospitals – Response rate: 64% – Generalizability tests 10

Results: Organizational Framework More than half of VAD programs reported to > 2 departments > 75% of VAD Coordinators reported to >2 administrators Patient-to-Coordinator census – Median = 15; IQR (10, 20); range 2-40 pts/VC 11

Results: Healthcare Structure – Organizational Framework 12 Healthcare Provider Assignments in VAD Hospitals (N =71) Healthcare Provider Assignment Type* % of row 1234 Cardiac Surgeon49600 Heart Failure Cardiologist Clinical Nurse Specialist Nurse Practitioner Discharge Planner Biomedical Engineer Pharmacist Social Worker98660 Physical Therapist Clinical Psychiatry Clinical Perfusionist Home Health Nurse Respiratory Therapist Dietician Chaplain = Works with VAD Program Only 2 = Same provider regularly assigned but also works with other kinds of patients 3 = Not regularly assigned to VAD program, but is available as needed 4 = Provider not currently available to VAD program Note. Items may not add to 100% due to rounding. *Values in cells are row %s.

Results: Health Care Structures – Caregiver Role Delineation 13

Results: Health Care Structures – VAD Coordinator Role Delineation 14 Role Components (N = 71) Role Component% % Development of VAD nursing education 96Database entry of clinical data79 On-call patient care responsibilities 95Direct care nursing (outpatient)75 Train staff at Subacute/Rehabilitation Facility 93 Maintain inventory of VAD equipment 74 Emergency Response Personnel (EMS) Education 93Advanced practice nursing (inpatient)59 Provide nursing staff education90Case Management58 Evaluate nursing staff education85Direct care nursing (inpatient)56 Research (Outcomes or Clinical)85 Advanced practice nursing (outpatient) 55 Train housestaff82Other17

Self-Care Education Processes: LVAD Self-Care Validation (N = 71) 15 Skill Return Physical Demonstration % Skill Return Physical Demonstration % Battery Changes99Emergency Management52 Dressing Changes99Patient Showering51 Self-Testing System Controller 94Recognizing Infection42 Care of the LVAD Percutaneous Driveline 90 Hemodynamic Monitoring27 Sterile Technique89Medication Management27 Alarm Troubleshooting59 CHF Symptom Management 18 Power Source Changes54

Self-Care Education Processes: % of Programs Using Only 1 LVAD Self-Care Evaluation Method (N = 71) 16 Skill % Using 1 Method Skill % Using 1 Method Medication Management 54 Battery Changes 32 CHF Symptom Management 52 Hemodynamic Monitoring 31 Dressing Changes44 Care of the LVAD Percutaneous Driveline 30 Sterile Technique 44 Power Source Changes 28 Self-Testing System Controller 42Emergency Management21 Patient Showering 39 Alarm Troubleshooting 17 Recognizing Infection 37

Results Capital Inputs 17 Materials Used by Hospitals for VAD Patient Self-Care Education (N = 71) Resource Frequency Used % Written material developed by device manufacturer/others 96 Verbal Instruction96 Written material developed by hospital or unit90 DVD89 Internet Website(s)66 CD-ROM21 Videotape18 Audio CD11 Podcasts6 Other17

Self-Care Education Processes: Patient Support 18 Organizational Resources for VAD Patients and Family/Caregivers (N= 71) Resource % of Hospitals with Resources Available to: PatientFamily/Caregiver Patient Counseling7365 VAD Support Group Meetings56 Hospital Website45 Patient-Provider Correspondence4544 Patient Picnics24 Facebook/Social Networking14 Internet listserv/ Discussion forum99 Internet Chat Rooms66

Results: Cluster Analysis (N = 66) 19 Cluster A (N = 29)Cluster B (N = 37) Capital Inputs Additional Materials Used for Education Videotape45% reported use0% reported use Audio CD21% reported use5% reported use Internet Websites76% reported use65% reported use Podcasts14% reported use0% reported use CD-ROM14% reported use30% reported use Support Processes Additional Resources Used for Patient and Family/Caregiver Patient Picnics48% reported use3% reported use Internet Listserv/Discussion Forums 21% reported use0% reported use Internet Chat rooms14% reported use0% reported use Social Networking Sites35% reported use0% reported use Labor Sum of Healthcare Providers on VAD Team 83% Same providers work regularly with VAD program, others are available as needed 81% Same providers work regularly with VAD program, others are available as needed Demand Actual Number of VAD Implants in Last Fiscal Year Median = 16, IQR = 10-36Median =21, IQR = 9-38

Limitations Additional VAD hospitals may exist but not likely Lack of financial/budget information 20

Implications: Clinical VAD programs should evaluate their existing care processes and supportive resources Use > 1 method for validation Use of simulation? 21

Implications: Future Research Measurement of patient centered care satisfaction with SCE within VAD hospitals* Explore relationship of patient satisfaction with patient service usage and health outcomes Explore relationships of VAD program SCE elements and other patient outcomes – Mortality, quality of life, complications 22

Implications Evaluate VAD coordinator preparation to teach Evaluation of current staff RN and VAD Coordinator orientation programs – Are current methods of orientation and training adequate? 23

Next Steps Describe reports of patient preference for – Methods used for self-care training – Methods used for evaluation of self-care Exploration of patient and family/caregiver perceptions of difficulty of VAD care skills Exploration of Staff RN and VAD Coordinator orientation programs 24

Next Steps Apply a similar approach to the cardiac transplant patient population 25

Questions? 26