Transcript QoL in Pediatric VAD - How are we doing

Quality of Life in Pediatric VADHow are we doing?
INTERMACS Eighth Annual Meeting
May 5, 2014
Karen Uzark, PhD, CPNP
University of Michigan
Congenital Heart Center
Definitions
HEALTH = “not only the absence of disease and
infirmity, but the presence of physical, mental, and
social well-being” 1948 WHO
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” 1991 WHO
Quality of Life ≠ Physical Health Status or Abilities
Quality of life cannot be simply inferred from clinical and
laboratory findings or objective criteria.
Dimensions of Quality of Life
• Physical functioning
• (Disease state and physical symptoms)
• Psychological/Emotional functioning
• Social functioning
• School/role functioning
• (Neurodevelopmental functioning)
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
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 (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.
Experience of Children with VAD as
Bridge to Transplant*
• 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, Pediatr Cardiol 2011.
Sedated
Paralyzed
Ambulating
Primary Nutrition Orally
Primary Nutrition per feeding tube
Primary Nutrition TPN
Playroom
Cafeteria
2. Has the patient had any non-medically
Walk outside
required excursions off the unit? If so,
Sitting Room
where (please select all that apply)
General Rehab
None
Other, specify_________________
1. It is hard for me to walk more than one block.
2. It is hard for me to run.
3. It is hard for me to do sports activity or exercise.
4. It is hard for me to lift something heavy
5. It is hard for me to take a bath or shower by myself.
6. It is hard for me to do chores around the house.
PedsQL (ages 8-12)
7. I hurt or ache.
8. I have low energy.
1. I feel afraid or scared.
2. I feel sad or blue
3. I feel angry
4. I have trouble sleeping.
5. I worry about what will happen to me.
1. I have trouble getting along with other kids
2. Other kids do not want to be my friend.
3. Other kids tease me.
4. I cannot do things that other kids my age can do.
5. It is hard to keep up when I play with other kids.
1. It is hard to pay attention in class.
2. I forget things.
3. I have trouble keeping up with my schooolwork.
4. I miss school because of not feeling well.
5. I miss school to go to the doctor or hospital.
VAD QOL
PediMACS QOL
indicators
Functional Status
Intubated
1. Functional Capacity: Answer Yes or No
1.
The assist device noise bothers I am awake.
2.
The assist device noise bothers me when I am trying to sleep.
3.
I have pain or discomfort at the driveline (tubing) exit site.
4.
I have difficulty sleeping due to the position of the driveline (tubing) exit
5.
I am bothered by how I look with the assist device.
6.
I worry about the assist device breaking or malfunctioning.
7.
I am bothered that I cannot visit family or friends outside home or the
8.
I am frustrated that I cannot move easily from place to place with the
9.
I cannot participate in usual play activities with the assist device.
10. I find it difficult to express feelings, talk to others about the assist
11. Overall, I would describe my level of day-to-day worry/anxiousness on
12. Overall, I would describe my level of day-to-day happiness on the assist
device to be: (1 high to 5 low)
PedsQL
1. The assist device noise bothers me when I am awake.
VAD-specific
QOL
Always
Very Often
Sometimes
Rarely
Never
2. The assist device noise bothers me when I am trying to sleep.
Always
Very Often
Sometimes
Rarely
Never
3. I have pain or discomfort at the driveline (tubing) exit site.
Always
Very Often
Sometimes
Rarely
Never
4. I have difficulty sleeping due to the position of the driveline (tubing) exit site.
Always
Very Often
Sometimes
Rarely
Never
5. I am bothered by how I look with the assist device.
Always
Very Often
Sometimes
Rarely
Never
6. I worry about the assist device breaking or malfunctioning.
Always
Very Often
Sometimes
Rarely
Never
7. I am bothered that I cannot visit my family or friends outside home or the hospital with the assist device.
Always
Very Often
Sometimes
Rarely
Never
8. I am frustrated that I cannot move easily from place to place with the assist device.
Always
Very Often
Sometimes
Rarely
Never
9. I cannot participate in usual play activities with the assist device.
Always
Very Often
Sometimes
Rarely
Never
10. I find it difficult to express feelings and talk to others about the assist device.
Always
Very Often
Sometimes
Rarely
Never
11. Overall, I would describe my level of day-to-day worry/anxiousness on the assist device to be:
Low
Medium
High
Peds QL and VAD Qol Completion Status
for Parents/Children by Patient Age
Pre-Implant
PedsQL - Child
N
Completed
PedsQL - Parent
%
Completed
PedsOL - either
%
Completed
%
Age at Follow-Up
<2 years
(24)
N/A
N/A
0
0.0%
0
0.0%
11
N/A
N/A
1
9.1%
1
9.1%
9
0
0.0%
1
11%
1
11%
31
2
6.5%
7
23%
7
23%
38
6
16%
10
26%
10
26%
113
8/78
(10%)
19
17%
19
17%*
2-4 years
5-7 years
8-12 years
13-18 years
TOTAL
*21% excluding <2 years
Peds QL and VAD Qol Completion Status
for Parents/Children by Patient Age
3 month Follow-up
Peds QL - Child
PedsQL - Parent
PedsQL - either
VAD QOL - Child
VAD QOL - Parent
VAD QOL - either
Complete
%
Complete
%
Complete
%
Complete
%
Complete
%
Complete
%
(9)
N/A
N/A
0
0.0%
0
0.0%
0
0.0%
1
11%
1
11%
4
N/A
N/A
1
25%
1
25%
0
0.0%
1
25%
1
25%
3
0
0.0%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
10
2
20%
2
20%
2
20%
2
20%
1
10%
2
20%
20
7
35%
5
25%
7
35%
4
20%
3
15%
4
20%
2
0
0.0%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
0
0.0%
48
9/30
(30%)_
8
17%
10
21%
6
13%
6
13%
8
17%*
N
Age at Follow-Up
<2 years
2-4 years
5-7 years
8-12 years
13-18 years
19+ years
TOTAL
*21% excluding <2 years
Peds QL – Reasons For Incompletion
Pre-implant
Reasons for Peds QoL
Incompletion
3 month Follow-up
Parent
Child
N
N
%
Reasons for Peds QoL
Incompletion
%
Parent
N
Too Sick
%
Child
N
%
Too Sick
18
21.2
39
40.6
3
12
3
11.5
1
4
1
3.8
8
32
8
30.8
13
52
14
53.8
25
100
26
100
Urgent Implant, No Time
Urgent Implant, No Time
13
15.3
6
6.3
Coordinator Too Busy or Forgot
Coordinator Too Busy or Forgot
3
3.5
2
2.1
2
2.4
.
.
Unable to Contact Patient
Other Reason, Specify
TOTAL
Other Reason, Specify
49
57.6
49
51.0
85
100
96
100
TOTAL
OTHER Reasons Form Incomplete
Pre-implant (n=43)
Post-implant (n=13)
• Forms/IRB not approved -17 (40%)
• Forms/IRB -4 (31%)
• (? license pending -2)
• Age too young -10; 1 too old (26%)
• Not consented -12 (28%)
• Other:
• Patient autistic -1
• No coordinator -2
• Age -2 (15%)
• No Consent -3 (23%)
• Transplanted -2 (15%)
Reason Missing -35
VAD QOL – Parent Report
n=4-6
VAD QOL – Parent Report (continued)
(n=4-6)
VAD QOL – Child Self-Report
(n=6)
VAD QOL – Child Self-Report (continued)
(n=6)
VAD QOL – Child Self-Report
Differences between 3 and 6 months
(n=6 at 3 mos, 5 at 6 mos)
THANK YOU!