Quality of Life in Pediatric VAD- How are we doing? INTERMACS Eighth Annual Meeting May 5, 2014

1. Quality of Life in Pediatric VAD- How are we doing? INTERMACS Eighth Annual Meeting May 5, 2014 Karen Uzark, PhD, CPNP University of Michigan Congenital Heart Center

2. HEALTH =“not only the absence of disease and infirmity, but the presence of physical, mental, and social well-being” QUALITY OF LIFE = “the individual’s perception of their position in life, in the context of culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” Quality of Life ≠ Physical Health Status or Abilities Quality of life cannot be simply inferred from clinical and laboratory findings or objective criteria. Definitions 1948 WHO 1991 WHO

3. Physical functioning (Disease state and physical symptoms) Psychological/Emotional functioning Social functioning School/role functioning (Neurodevelopmental functioning) Dimensions of Quality of Life

4. Survival to Transplant or Recovery Improved cardiac output → improvement in end-organ function Physical rehabilitation Extubation Mobilization/Ambulation Enteral nutrition Neurological evaluation-rehabilitation → Improved psychosocial quality of life Ventricular Assist Devices –Goals:

5. No significant difference in QOL between 21 children who had VAD and 42 without VAD at a median of 4.2 years post-transplant (Ezon et al, J ThoracCardiovascSurg 2014) Limitations: small sample size, wide age range, parent survey only, type of VAD support varied, survivor bias Children who required VAD/ECMO (n=26) reported QOL similar to children without MCS (n=58) at a median of 3 years post transplant * (Wray et al, J Heart Lung Transplant 2012) Limitations: small sample size, wide age range, CHD dx exclusion, type of support varied, parent survey in younger patients, survivor bias * Longer period of heart failure in MCS was associated with poorer child ratings of social QOL. Quality of Life (QOL) in Children Bridged to Transplant with VADs

6. Qualitative study with semi-structured interviews with children (n=4) over 13 years old. Child responses : Frightened, scared of clots and strokes, appreciative/relieved (would die without it) Not prepared for “big washing machine”, big hoses. *Gilmore and Newall, PediatrCardiol 2011. Experience of Children with VAD as Bridge to Transplant*

7. PediMACS QOL indicators

8. PedsQL

9. VAD-specific QOL

10. Peds QL and VAD Qol Completion Statusfor Parents/Children by Patient Age Pre-Implant *21% excluding <2 years

11. Peds QL and VAD Qol Completion Statusfor Parents/Children by Patient Age 3 month Follow-up *21% excluding <2 years

12. Peds QL – Reasons For Incompletion Pre-implant 3 month Follow-up

13. OTHER Reasons Form Incomplete Pre-implant (n=43) Post-implant (n=13) Forms/IRB -4 (31%) Age -2 (15%) No Consent -3 (23%) Transplanted -2 (15%) Reason Missing -35 • Forms/IRB not approved -17 (40%) • (? license pending -2) • Age too young -10; 1 too old (26%) • Not consented -12 (28%) • Other: • Patient autistic -1 • No coordinator -2

14. VAD QOL – Parent Reportn=4-6

15. VAD QOL – Parent Report (continued)(n=4-6)

16. VAD QOL – Child Self-Report(n=6)

17. VAD QOL – Child Self-Report (continued)(n=6)

18. VAD QOL – Child Self-ReportDifferences between 3 and 6 months(n=6 at 3 mos, 5 at 6 mos)

19. THANK YOU!