Quality of Life in Pediatric VAD-

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• 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
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Definitions

• HEALTH not only the absence of disease and
  infirmity, but the presence of physical, mental,
  and social well-being
• QUALITY OF LIFE the individuals 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.

1948 WHO
1991 WHO
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Dimensions of Quality of Life

• Physical functioning
• (Disease state and physical symptoms)
• Psychological/Emotional functioning
• Social functioning
• School/role functioning
• (Neurodevelopmental functioning)

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Ventricular Assist Devices Goals

• 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

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Quality of Life (QOL) in Children Bridged to
Transplant with VADs

• 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 Thorac Cardiovasc Surg 2014)
• Limitations small sample size, wide age range,
  parent survey only, type of VAD support varied,
  survivor bias
• Children who required VAD/ECMO (n26) reported
  QOL similar to children without MCS (n58) 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.

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Experience of Children with VAD as Bridge to
Transplant

• Qualitative study with semi-structured interviews
  with children (n4) 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, Pediatr Cardiol 2011.

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PediMACS QOL indicators
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PedsQL
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VAD-specific QOL
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Peds QL and VAD Qol Completion Statusfor
Parents/Children by Patient Age
Pre-Implant
  N PedsQL - Child PedsQL - Child PedsQL - Parent PedsQL - Parent PedsOL - either PedsOL - either
  N Completed Completed Completed
Age at Follow-Up (24) N/A N/A 0 0.0 0 0.0
lt2 years (24) N/A N/A 0 0.0 0 0.0
2-4 years 11 N/A N/A 1 9.1 1 9.1
5-7 years 9 0 0.0 1 11 1 11
8-12 years 31 2 6.5 7 23 7 23
13-18 years 38 6 16 10 26 10 26
TOTAL 113 8/78 (10) 19 17 19 17
21 excluding lt2 years
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Peds QL and VAD Qol Completion Statusfor
Parents/Children by Patient Age
3 month Follow-up
  N Peds QL - Child Peds QL - Child PedsQL - Parent PedsQL - Parent PedsQL - either PedsQL - either VAD QOL - Child VAD QOL - Child VAD QOL - Parent VAD QOL - Parent VAD QOL - either VAD QOL - either
  N Complete Complete Complete Complete Complete Complete
Age at Follow-Up (9) N/A N/A 0 0.0 0 0.0 0 0.0 1 11 1 11
lt2 years (9) N/A N/A 0 0.0 0 0.0 0 0.0 1 11 1 11
2-4 years 4 N/A N/A 1 25 1 25 0 0.0 1 25 1 25
5-7 years 3 0 0.0 0 0.0 0 0.0 0 0.0 0 0.0 0 0.0
8-12 years 10 2 20 2 20 2 20 2 20 1 10 2 20
13-18 years 20 7 35 5 25 7 35 4 20 3 15 4 20
19 years 2 0 0.0 0 0.0 0 0.0 0 0.0 0 0.0 0 0.0
TOTAL 48 9/30 (30)_ 8 17 10 21 6 13 6 13 8 17
21 excluding lt2 years
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Peds QL Reasons For Incompletion
Pre-implant
3 month Follow-up
Reasons for Peds QoL Incompletion Parent Parent Child Child
Reasons for Peds QoL Incompletion N N
Too Sick 18 21.2 39 40.6
Urgent Implant, No Time 13 15.3 6 6.3
Coordinator Too Busy or Forgot 3 3.5 2 2.1
Unable to Contact Patient 2 2.4 . .
Other Reason, Specify 49 57.6 49 51.0
TOTAL 85 100 96 100
Reasons for Peds QoL Incompletion Parent Parent Child Child
Reasons for Peds QoL Incompletion N N
Too Sick 3 12 3 11.5
Urgent Implant, No Time 1 4 1 3.8
Coordinator Too Busy or Forgot 8 32 8 30.8
Other Reason, Specify 13 52 14 53.8
TOTAL 25 100 26 100
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OTHER Reasons Form Incomplete

• Pre-implant (n43)

• Post-implant (n13)

• 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

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VAD QOL Parent Reportn4-6
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VAD QOL Parent Report (continued)(n4-6)
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VAD QOL Child Self-Report(n6)
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VAD QOL Child Self-Report (continued)(n6)
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VAD QOL Child Self-ReportDifferences between 3
and 6 months(n6 at 3 mos, 5 at 6 mos)
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• THANK YOU!