Table 2.
Questions about admissions, readmissions, and appointment keeping (n = 531).
| Question | Response | Adults (N = 201) | Childrena (N = 330) | Combined (N = 531) |
|---|---|---|---|---|
| Admissions | ||||
| Have you (or your child) been admitted to the hospital withinthe last year? | No | 66 (31.3%) | 189 (57.1%) | 255 (47.0%) |
| Yes | 135 (64.0%) | 141 (42.6%) | 276 (50.9%) | |
| I was unable to get the medication(s) I (or my child) needed. | No | 91 (67.4%) | 134 (95%) | 225 (81.5%) |
| Yes | 39 (28.9%) | 7 (5%) | 46 (16.7%) | |
| I did not feel that my (or my childs) medication was working. | No | 71 (52.6%) | 101 (71.6%) | 172 (62.3%) |
| Yes | 59 (43.7%) | 40 (28.4%) | 99 (35.9%) | |
| I did not have a good understanding of how often and how much of each medication I (or my child) needed. | No | 117 (86.7%) | 135 (95.7%) | 252 (91.3%) |
| Yes | 12 (8.9%) | 6 (4.3%) | 18 (6.5%) | |
| I did not have a good understanding of the major side effects of my (or my childs) medications. | No | 120 (88.9%) | 132 (93.6%) | 252 (91.3%) |
| Yes | 11 (8.1%) | 9 (6.4%) | 20 (7.2%) | |
| My (or my childs) pain was not able to be controlled at home. | No | 21 (15.6%) | 44 (31.2%) | 65 (23.6%) |
| Yes | 113 (83.7%) | 97 (68.8%) | 210 (76.1%) | |
| I did not have all the information I needed to take care of my (or my childs) illness at home. | No | 113 (83.7%) | 130 (92.2%) | 243 (88%) |
| Yes | 17 (12.6%) | 11 (7.8%) | 28 (10.1%) | |
| I did not understand which warning signs and symptoms meant | No | 114 (84.4%) | 131 (92.9%) | 245 (88.8%) |
| I should call my (or my childs) healthcare provider. | Yes | 16 (11.9%) | 10 (7.1%) | 26 (9.4%) |
| I (or my child) had an illness unrelated to their sickle cell disease (e.g. asthma). | No | 79 (58.5%) | 102 (72.3%) | 181 (65.6%) |
| Yes | 50 (37%) | 39 (27.7%) | 89 (32.2%) | |
| I (or my child) needed to get fluids or blood transfusion | No | 40 (29.6%) | 60 (42.6%) | 100 (36.2%) |
| Yes | 90 (66.7%) | 81 (57.4%) | 171 (62%) | |
| I (or my child) had a fever | No | 80 (59.3%) | 64(45.4%) | 144 (52.2%) |
| Yes | 51 (37.8%) | 77 (54.6%) | 128 (46.4%) | |
| Readmissions | ||||
| Have you (or your child) been admitted to the hospital twice in the same month within the last year? | No | 143 (67.8%) | 301 (90.9%) | 444 (81.9%) |
| Yes | 58 (27.5%) | 29 (8.8%) | 87 (16.1%) | |
| I was unable to get the medication(s) I (or my child) needed. | No | 30 (51.7%) | 27 (93.1%) | 57 (65.5%) |
| Yes | 22 (37.9%) | 2 (6.9%) | 24 (27.6%) | |
| I did not feel that my (or my childs) medication was working. | No | 22 (37.9%) | 20 (69%) | 42 (48.3%) |
| Yes | 34 (58.6%) | 9 (31%) | 43 (49.4%) | |
| I did not have a good understanding of how often and how much of each medication I (or my child) needed. | No | 48 (82.8%) | 28 (96.6%) | 76 (87.4%) |
| Yes | 4 (6.9%) | 1 (3.4%) | 5 (5.7%) | |
| I did not have a good understanding of the major side effects of my (or my childs) medications. | No | 46 (79.3%) | 26 (89.7%) | 72 (82.8%) |
| Yes | 5 (8.6%) | 3 (10.3%) | 8 (9.2%) | |
| My (or my childs) pain was not able to be controlled at home. | No | 8 (13.8%) | 9 (31%) | 17 (19.5%) |
| Yes | 48 (82.8%) | 20 (69%) | 68 (78.2%) | |
| I did not have all the information I needed to manage my (or my childs) illness at home. | No | 43 (74.1%) | 24 (82.8%) | 67 (77%) |
| Yes | 10 (17.2%) | 5 (17.2%) | 15 (17.2%) | |
| I did not understand which warning signs and symptoms meant | No | 45 (77.6%) | 25 (86.2%) | 70 (80.5%) |
| I should call my (or my childs) healthcare provider. | Yes | 7 (12.1%) | 4 (13.8%) | 11 (12.6%) |
| I (or my child) had an illness unrelated to their sickle cell disease (e.g. asthma). | No | 33 (56.9%) | 23 (79.3%) | 56 (64.4%) |
| Yes | 19 (32.8%) | 6 (20.7%) | 25 (28.7%) | |
| I (or my child) was not healthy enough to leave the hospital during the first stay. | No | 20 (34.5%) | 20 (69%) | 40 (46%) |
| Yes | 33 (56.9%) | 9 (31%) | 42 (48.3%) | |
| I (or my child) had a fever | No | 29 (50%) | 14 (48.3%) | 43 (49.4%) |
| Yes | 24 (41.4%) | 14 (48.3%) | 38 (43.7%) | |
| Missed appointments | ||||
| Have you missed an appointment for any reason over the past year? | No | 26 (12.3%) | 114 (34.4%) | 140 (25.8%) |
| Yes | 183 (86.7%) | 216 (65.3%) | 399 (73.6%) | |
| Reasons you missed an appointment | I forgot I had an appointment | 65 (30.8%) | 56 (25.9%) | 121 (30.3%) |
| The appointment was at a time that didn’t work for me | 53 (25.1%) | 42 (19.4%) | 95 (23.8%) | |
| My health impacted my ability to make the appointment | 40 (19.0%) | 9 (4.2%) | 49 (12.3%) | |
| I did not know I had an appointment | 39 (18.5%) | 22 (10.2%) | 61 (15.3%) | |
| I didn’t have a way to get to the appointment | 44 (20.9%) | 50 (23.1%) | 94 (23.6%) | |
a
Caregivers were asked to report for their children under 18 years.
b
Percentages may not add up to 100% because of missing data.