quality of life in pediatric vad- how are we doing? intermacs eighth annual meeting may 5, 2014...
TRANSCRIPT
Quality of Life in Pediatric VAD-
How are we doing?
INTERMACS Eighth Annual MeetingMay 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”
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.
1948 WHO
1991 WHO
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.
PediMACS QOL indicators
Sedated
Paralyzed
Intubated
Ambulating
Primary Nutrition Orally
Primary Nutrition per feeding tube
Primary Nutrition TPN
Playroom
Cafeteria
Walk outside
Sitting Room
General Rehab
None
Other, specify_________________
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)
2. Has the patient had any non-medically
required excursions off the unit? If so,
where (please select all that apply)
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
4. I miss school because of not feeling well.
5. I miss school to go to the doctor or hospital.
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.
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 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.
Fun
ctio
na
l Sta
tus
1. It is hard for me to walk more than one block.
1. Functional Capacity: Answer Yes or No
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
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
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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.
4. I cannot do things that other kids my age can do.
PedsQL
VAD-specific QOL
1. The assist device noise bothers me when I am awake.
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 Statusfor Parents/Children by Patient Age
N
PedsQL - Child PedsQL - Parent PedsOL - either
Completed % Completed % Completed %Age at Follow-Up
(24) N/A N/A 0 0.0% 0 0.0%
<2 years
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%*
Pre-Implant
*21% excluding <2 years
Peds QL and VAD Qol Completion Statusfor Parents/Children by Patient Age
3 month Follow-up
N
Peds QL - Child PedsQL - Parent PedsQL - either VAD QOL - Child VAD QOL - Parent VAD QOL - either
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%
<2 years
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 <2 years
Peds QL – Reasons For Incompletion
Reasons for Peds QoL Incompletion
Parent Child
N % N %Too Sick
18 21.2 39 40.6Urgent Implant, No Time
13 15.3 6 6.3Coordinator Too Busy or Forgot
3 3.5 2 2.1Unable to Contact Patient
2 2.4 . .Other Reason, Specify
49 57.6 49 51.0TOTAL
85 100 96 100
Pre-implant
Reasons for Peds QoL Incompletion
Parent Child
N % N %Too Sick
3 12 3 11.5Urgent Implant, No Time
1 4 1 3.8Coordinator Too Busy or Forgot
8 32 8 30.8Other Reason, Specify
13 52 14 53.8TOTAL
25 100 26 100
3 month Follow-up
OTHER Reasons Form Incomplete
Pre-implant (n=43)
• 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
Post-implant (n=13)
• Forms/IRB -4 (31%)
• Age -2 (15%)
• No Consent -3 (23%)
• Transplanted -2 (15%)
Reason Missing -35
VAD QOL – Parent Reportn=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-ReportDifferences between 3 and 6 months
(n=6 at 3 mos, 5 at 6 mos)
THANK YOU!