Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers
Abstract
:1. Introduction
2. Materials and Methods
2.1. Database
2.2. Survey
3. Results
3.1. Database
Place of Death and Cause of Death
3.2. Survey
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Variables | Modalities | All Patients (n = 233) | At Home or Hospice (n = 32) | PICU (n = 88) | Other Hospital (n = 40) | HSCT Unit (n = 47) | Unknown Place of Death by the Center (n = 26) | Test p-Value |
---|---|---|---|---|---|---|---|---|
Age at first HSCT | median [IQR] | 6.01 [2.6–11.8] | 7.9 [3.1–10.7] | 5.7 [1.7–12.8] | 4.8 [2.1–11.8] | 6.9 [2.3–10.8] | 7 [3.5–11.6] | 0.6 |
(range) | (0.2–18) | (1.1–17.8) | (0.2–18) | (0.2–17.4) | (0.4–15.9) | (0.6–17.9) | ||
Patient sex n (%) | Female | 94 (40.3) | 15 (16.0) | 37 (39.4) | 10 (10.6) | 18 (19.1) | 14 (14.9) | 0.16 |
Male | 139 (59.7) | 17 (12.2) | 51 (36.7) | 30 (21.6) | 29 (20.9) | 12 (8.6) | ||
Time between last HSCT and death (in month) | median [IQR] | 3.8 [1.6–9.1] | 8.7 [4.1–17.4] | 1.8 [0.8–4.4] | 4.8 [3.6–11.4] | 2.6 [1.4–4.4] | 8.2 [3.8–17.7] | <0.0001 |
(range) | (0–48.9) | (1.6–48.9) | (0.1–37.1) | (0.6–47.5) | (0–28.8) | (1.8–36.8) | ||
Age at death (in years) | median [IQR] | 7.2 [3.3–13.2] | 8.9 [4.9–13.1] | 6.9 [2.6–13.2] | 6.5 [3.6–12.6] | 7.4 [2.5–12.3] | 8.7 [4.2–12.7] | 0.48 |
(range) | (0.3–21.6) | (1.8–20.2) | (0.3–21.6) | (0.6–19) | (0.6–17.9) | (2.5–19.5) | ||
Cause of death * n (%) | HSCT-related | 137 (59.3) | 5 (3.6) | 76 (55.5) | 15 (10.9) | 34 (24.8) | 7 (5.1) | <0.0001 |
Disease-related | 94 (40.7) | 27 (28.7) | 12 (12.8) | 24 (25.5) | 13 (13.8) | 18 (19.1) | ||
missing | 2 | 0 | 0 | 1 | 0 | 1 | ||
Total number of HSCT n (%) | Single HSCT | 176 (75.5) | 28 (15.9) | 68 (38.6) | 31 (17.6) | 29 (16.5) | 20 (11.4) | 0.11 |
Multiple HSCT | 57 (24.5) | 4 (7.0) | 20 (35.1) | 9 (15.8) | 18 (31.6) | 6 (10.5) | ||
Disease ** n (%) | Malignant | 147 (63.1) | 29 (19.7) | 47 (32.0) | 26 (17.7) | 21 (14.3) | 24 (16.3) | <0.0001 |
Non-Malignant | 86 (36.9) | 3 (3.5) | 41 (47.7) | 14 (16.3) | 26 (30.2) | 2 (2.3) |
Variables | Modalities | All Patients (n = 233) | Malignant (n = 147) | Non-Malignant (n = 86) | Test p-Value |
---|---|---|---|---|---|
Age at first HSCT | median [IQR] | 6.0 [2.6–11.8] | 7.5 [4–13] | 2.7 [0.7–8.4] | <0.0001 |
(range) | (0.2–18) | (0.5–17.9) | (0.2–18) | ||
Patient sex n (%) | Female | 94 (40.3) | 59 (40.1) | 35 (40.7) | 0.93 |
Male | 139 (59.7) | 88 (59.9) | 51 (59.3) | ||
Time between last HSCT and death (month) | median [IQR] | 3.8 [1.6–9.1] | 4.8 [2.7–10.9] | 2.1 [1.1–4.2] | <0.0001 |
(range) | (0–48.9) | (0.1–48.9) | (0–47.5) | ||
Age at death | median [IQR] | 7.2 [3.3–13.2] | 8.9 [5.4–14.3] | 3.5 [1.4–9.2] | <0.0001 |
(range) | (0.3–21.6) | (0.7–21.6) | (0.3–18.1) | ||
Cause of death | HSCT-related | 137 (59.3) | 65 (44.5) | 72 (84.7) | <0.0001 |
n (%) | Disease-related | 94 (40.7) | 81 (55.5) | 13 (15.3) | |
missing | 2 | 1 | 1 | ||
Total number of HSCT | Single HSCT | 176 (75.5) | 109 (74.1) | 67 (77.9) | 0.52 |
n (%) | Multiple HSCT | 57 (24.5) | 38 (25.9) | 19 (22.1) | |
Total number of HSCT (detailed) | 1 | 176 (75.5) | 109 (74.1) | 67 (77.9) | Not tested |
n (%) | 2 | 45 (19.3) | 32 (21.8) | 13 (15.1) | |
3 | 9 (3.9) | 6 (4.1) | 3 (3.5) | ||
4 | 3 (1.3) | 0 (0) | 3 (3.5) |
Questions | Responses | All Respondents (n = 98) | Physician (n = 42) | Nurse (n = 40) | Affiliated (n = 16) |
---|---|---|---|---|---|
Years working in current function n (%) | 0 to 5 | 19 (21.6) | 7 (20) | 7 (18.9) | 5 (31.2) |
5 to 10 | 14 (15.9) | 7 (20) | 4 (10.8) | 3 (18.8) | |
10 to 15 | 15 (17) | 4 (11.4) | 6 (16.2) | 5 (31.2) | |
15–20 | 14 (15.9) | 5 (14.3) | 7 (18.9) | 2 (12.5) | |
>20 | 26 (29.5) | 12 (34.3) | 13 (35.1) | 1 (6.2) | |
missing | 10 | 7 | 3 | 0 | |
Age (in years) n (%) | 25–35 | 16 (16.8) | 4 (9.5) | 6 (16.2) | 6 (37.5) |
35–40 | 12 (12.6) | 7 (16.7) | 4 (10.8) | 1 (6.2) | |
40–55 | 50 (52.6) | 20 (47.6) | 22 (59.5) | 8 (50) | |
55–60 | 11 (11.6) | 6 (14.3) | 4 (10.8) | 1 (6.2) | |
>60 | 6 (6.3) | 5 (11.9) | 1 (2.7) | 0 (0) | |
missing | 3 | 0 | 3 | 0 | |
Sex n (%) | Female | 78 (79.6) | 26 (61.9) | 37 (92.5) | 15 (93.8) |
Male | 20 (20.4) | 16 (38.1) | 3 (7.5) | 1 (6.2) |
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Mekelenkamp, H.; Schröder, T.; Trigoso, E.; Hutt, D.; Galimard, J.-E.; Kozijn, A.; Dalissier, A.; Gjergji, M.; Liptrott, S.; Kenyon, M.; et al. Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers. Children 2021, 8, 615. https://0-doi-org.brum.beds.ac.uk/10.3390/children8080615
Mekelenkamp H, Schröder T, Trigoso E, Hutt D, Galimard J-E, Kozijn A, Dalissier A, Gjergji M, Liptrott S, Kenyon M, et al. Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers. Children. 2021; 8(8):615. https://0-doi-org.brum.beds.ac.uk/10.3390/children8080615
Chicago/Turabian StyleMekelenkamp, Hilda, Teija Schröder, Eugenia Trigoso, Daphna Hutt, Jacques-Emmanuel Galimard, Anne Kozijn, Arnaud Dalissier, Marjola Gjergji, Sarah Liptrott, Michelle Kenyon, and et al. 2021. "Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers" Children 8, no. 8: 615. https://0-doi-org.brum.beds.ac.uk/10.3390/children8080615