Quality of Life in Pediatric VAD- How are we doing?

Transcription

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

2 Definitions HEALTH = not only the absence of disease and infirmity, but the presence of physical, mental, and social well-being 98 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 99 WHO Quality of Life Physical Health Status or Abilities Quality of life cannot be simply inferred from clinical and laboratory findings or objective criteria.

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

4 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

5 Quality of Life (QOL) in Children Bridged to Transplant with VADs No significant difference in QOL between children who had VAD and without VAD at a median of. years post-transplant (Ezon et al, J Thorac Cardiovasc Surg ) Limitations: small sample size, wide age range, parent survey only, type of VAD support varied, survivor bias Children who required VAD/ECMO (n=6) reported QOL similar to children without MCS (n=58) at a median of years post transplant * (Wray et al, J Heart Lung Transplant ) 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.

6 Experience of Children with VAD as Bridge to Transplant* Qualitative study with semi-structured interviews with children (n=) over 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.

7 PediMACS QOL indicators Functional Status VAD QOL PedsQL (ages 8-). Functional Capacity: Answer Yes or No. Has the patient had any non-medically required excursions off the unit? If so, where (please select all that apply) Sedated Paralyzed Intubated Ambulating Primary Nutrition Orally Primary Nutrition per feeding tube Primary Nutrition TPN Playroom Cafeteria Walk outside Sitting Room General Rehab None. It is hard for me to walk more than one block.. It is hard for me to run.. It is hard for me to do sports activity or exercise.. 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. 7. I hurt or ache. 8. I have low energy.. I feel afraid or scared.. I feel sad or blue. I feel angry. I have trouble sleeping. 5. I worry about what will happen to me.. I have trouble getting along with other kids. Other kids do not want to be my friend.. Other kids tease me.. I cannot do things that other kids my age can do. 5. It is hard to keep up when I play with other kids.. It is hard to pay attention in class.. I forget things.. I have trouble keeping up with my schooolwork.. I miss school because of not feeling well. 5. I miss school to go to the doctor or hospital.. The assist device noise bothers I am awake. Other, specify. The assist device noise bothers me when I am trying to sleep.. I have pain or discomfort at the driveline (tubing) exit site.. 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.. I find it difficult to express feelings, talk to others about the assist. Overall, I would describe my level of day-to-day worry/anxiousness on. Overall, I would describe my level of day-to-day happiness on the assist device to be: ( high to 5 low)

8 PedsQL

9 VAD-specific QOL. The assist device noise bothers me when I am awake.. The assist device noise bothers me when I am trying to sleep.. I have pain or discomfort at the driveline (tubing) exit site.. I have difficulty sleeping due to the position of the driveline (tubing) exit site. 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 my family or friends outside home or the hospital with the assist device. 8. I am frustrated that I cannot move easily from place to place with the assist device. 9. I cannot participate in usual play activities with the assist device.. I find it difficult to express feelings and talk to others about the assist device.. Overall, I would describe my level of day-to-day worry/anxiousness on the assist device to be: Low Medium High

10 Peds QL and VAD Qol Completion Status for Parents/Children by Patient Age Pre-Implant PedsQL - Child PedsQL - Parent PedsOL - either Age at Follow-Up N Completed % Completed % Completed % < years - years 5-7 years 8- years -8 years TOTAL () N/A N/A.%.% N/A N/A 9.% 9.% 9.% % % 6.5% 7 % 7 % 8 6 6% 6% 6% 8/78 (%) 9 7% 9 7%* *% excluding < years

11 Peds QL and VAD Qol Completion Status for Parents/Children by Patient Age month Follow-up Peds QL - Child PedsQL - Parent PedsQL - either VAD QOL - Child VAD QOL - Parent VAD QOL - either Age at Follow-Up N Complete % Complete % Complete % Complete % Complete % Complete % < years - years 5-7 years 8- years -8 years 9+ years TOTAL (9) N/A N/A.%.%.% % % N/A N/A 5% 5%.% 5% 5%.%.%.%.%.%.% % % % % % % 7 5% 5 5% 7 5% % 5% %.%.%.%.%.%.% 8 9/ (%)_ 8 7% % 6 % 6 % 8 7%* *% excluding < years

12 Peds QL Reasons For Incompletion Pre-implant month Follow-up Reasons for Peds QoL Incompletion Too Sick Parent Child N % N % Reasons for Peds QoL Incompletion Too Sick Parent Child N % N % Urgent Implant, No Time Coordinator Too Busy or Forgot Unable to Contact Patient Urgent Implant, No Time Coordinator Too Busy or Forgot Other Reason, Specify Other Reason, Specify... TOTAL TOTAL

13 OTHER Reasons Form Incomplete Pre-implant (n=) Forms/IRB not approved -7 (%) (? license pending -) Age too young -; too old (6%) Not consented - (8%) Other: Patient autistic - No coordinator - Post-implant (n=) Forms/IRB - (%) Age - (5%) No Consent - (%) Transplanted - (5%) Reason Missing -5

14 VAD QOL Parent Report n=-6 VAD noise bothers while awake VAD noise bothers while asleep Pain/discomfort at driveline site Difficulty sleeping due to driveline Bothered cannot move easily with VAD Bothered cannot participate in activities

15 VAD QOL Parent Report (continued) (n=-6) Bothered by appearance with VAD (n=) Worry VAD will break / malfunction (n=) Bothered cannot visit family/friends (n=) Difficult to express feelings about VAD (n=) Overall day-to-day VAD worry level (n=) Overall day-to-day VAD happiness level

16 VAD QOL Child Self-Report (n=6) VAD noise bothers while awake VAD noise bothers while asleep Pain/discomfort at driveline site Difficulty sleeping due to driveline Bothered cannot move easily with VAD Bothered cannot participate in activities

17 VAD QOL Child Self-Report (continued) (n=6) Bothered by appearance with VAD Worry VAD will break / malfunction Bothered cannot visit family/friends Difficult to express feelings about VAD Overall day-to-day VAD worry level Overall day-to-day VAD happiness level

18 VAD QOL Child Self-Report Differences between and 6 months (n=6 at mos, 5 at 6 mos) VAD noise bothers while awake Difficult to express feelings about VAD Overall Day-to-Day Worry Level mos 6 mos mos 6 mos mos 6 mos

19 THANK YOU!