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Table 2 Health related quality of life survey results

From: Community-based pediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study

Part I.
HRQoL Constructs & Items Responses by Range of Days
General Emotional Health
How many days during the past 30 days have you felt…
0 to 5 days 6 to 10 days 11 to 15 days 16 to 20 days 21 to 25 days 26 to 30 days
 1.…stressed about your child’s health 18 (34 %) 11 (20.8 %) 5 (9.4 %) 2 (3.8 %) 0 (0 %) 17 (32.1 %)
 2.…scared about your child’s health 37 (69.8 %) 6 (11.3 %) 1 (1.9 %) 0 (0 %) 0 (0 %) 9 (17 %)
 3. …sad about your child’s health 25 (47.2 %) 8 (15.1 %) 3 (5.7 %) 2 (3.8 %) 0 (0 %) 15 (28.3 %)
 4. …angry about your child’s health 45 (84.9 %) 3 (5.7 %) 2 (3.8 %) 0 (0 %) 0 (0 %) 3 (5.7 %)
 5. …disappointed with my results when 46 (86.8 %) 3 (5.7 %) 2 (3.8 %) 0 (0 %) 0 (0 %) 2 (3.8 %)
Respite Care
How many days in the last 30 days…
 6. …Was there someone to relieve you of your role of taking care of your child? 25 (47.2 %) 7 (13.2 %) 2 (3.8 %) 1 (1.9 %) 0 (0 %) 18 (34.0 %)
Activity Limitation
How many days during the past 30 days …..
 7. …Were you not able to do your usual activities because of stress, depression, and other emotional problems 42 (79.2 %) 4 (7.5 %) 4 (7.5 %) 0 (0 %) 0 (0 %) 3 (5.7 %)
Part II.
  Ordinal Scaled Responses
HRQoL Constructs and Items None of the time A little of the time Sometimes Most of the time All the time
Decision making (1) (2) (3) (4) (5)
 1. I am able to make good decisions concerning healthcare options for my child 0 (0 %) 0 (0 %) 1 (1.9 %) 13 (24.5 %) 39 (73.6 %)
 2. I am able to find a way to make sure that my child has healthcare specific to their needs 0 (0 %) 0 (0 %) 5 (9.4 %) 13 (24.5 %) 35 (66.0 %)
 3. I receive correct information about my child’s condition or illness 0 (0 %) 1 (1.9 %) 10 (18.9 %) 11 (20.8 %) 31 (58.5 %)
 4. I feel confident in my decision to manage my child’s health 0 (0 %) 0 (0 %) 3 (5.7 %) 14 (26.4 %) 36 (67.9 %)
 5. I am satisfied with decisions made for my child’s healthcare needs after a doctor’s visit 0 (0 %) 1 (1.9 %) 8 (15.1 %) 19 (35.8 %) 25 (47.2 %)
Social Support
 6. I have someone I can talk to about my fears concerning my child’s health 1 (1.9 %) 2 (3.8 %) 7 (13.2 %) 5 (9.4 %) 38 (71.7 %)
Interaction/Communication
 7. I can explain my child’s need to my primary healthcare provider 0 (0 %) 2 (3.8 %) 4 (7.5 %) 11 (20.8 %) 36 (67.9 %)
 8. I can understand the needs of my child from my primary healthcare provider 0 (0 %) 0 (0 %) 4 (7.5 %) 16 (30.2 %) 33 (62.3 %)
 9. I am able to ask questions I may have about my child’s healthcare 0 (0 %) 0 (0 %) 3 (5.7 %) 7 (13.2 %) 43 (81.1 %)
 10. My child has someone they can express themselves to when they are sad, angry, afraid, etc… 9 (17.0 %) 0 (0 %) 3 (5.7 %) 4 (7.5 %) 37 (69.8 %)
Access to Resources
I am able to obtain or have assistance in obtaining the following:
 11. Medicine 1 (1.9 %) 0 (0 %) 2 (3.8 %) 6 (11.3 %) 44 (83.0 %)
 12. Medical equipment 0 (0 %) 0 (0 %) 6 (11.3 %) 13 (24.5 %) 34 (64.2 %)
 13. Housing and Utilities 4 (7.5 %) 0 (0 %) 3 (5.7 %) 4 (7.5 %) 42 (79.2 %)
Child Health
 14. I am able to understand the needs of my child 0 (0 %) 0 (0 %) 3 (5.7 %) 16 (30.2 %) 34 (64.2 %)
 15. My child understands their condition 29 (54.7 %) 2 (3.8 %) 7 (13.2 %) 3 (5.7 %) 12 (22.6 %)
 16. My child spends quality time with family and friends 1 (1.9 %) 0 (0 %) 4 (7.5 %) 5 (9.4 %) 43 (81.1 %)
 17. My child is treated with dignity while receiving healthcare services 0 (0 %) 0 (0 %) 1 (1.9 %) 4 (7.5 %) 48 (90.6 %)