Palliative Outpatient Care in Children with Hematologic Malignancies Compared to Solid Tumors

Background:

The palliative care needs of children with cancer strongly depend on tumor entity and localization. However, little is known about the needs of children with hematologic malignancies (HM), as a much larger body of publications deals with the needs of children with solid tumors.

Methods:

Patient data were extracted from the database of one of the largest pediatric palliative care teams (PPCT) in Germany. Information included demographic data, diagnoses, patient contacts, symptoms, and medications. Children with HM were compared to other malignancies using bivariate analyses.

Results:

Between 01/2013 and 05/2016, the PPCT cared for a total of 178 patients. Of the 58 children with cancer (3 bone tumors, 25 brain tumors, 6 neuroblastomas, 9 soft tissue sarcomas, 9 other solid tumors), 6 (10.3%) had a hematologic malignancy (2 acute lymphoblastic leukemia, 2 acute myeloid leukemia, 1 T-cell lymphoma, 1 Burkitt lymphoma). Two patients underwent hematopoietic stem cell transplantation. Median age of patients with HM at the beginning of PCT was 12.1 years (range 5.4-18.9 years), 5 children were male. The number of children with HM cared for in the home setting was likely low due to the fact that most children with relapsed or refractory leukemia die during intensive chemotherapy and are thus still cared for in hospital.

Time from start of palliative home care to death was the same in children with HM compared to non HM (54 vs. 53 days in care), although the range of days in palliative care was larger in children with non HM (1 to 226 days) compared to children with HM (10 to 116 days). The number of home visits was equal (9.7 vs. 9.4) as was the number of home visits per days in care (0.18 vs. 0.18). In both patient groups, most patients died at home or in hospice. The leading symptoms in children with HM were weakness and anxiety, whereas the most frequently reported symptom in patients with non HM was difficulty to move around (i.e. walk). Other frequently reported symptoms in non HM were neurological and gastrointestinal problems. In children with non HM, the occurring symptoms were much more variable. Mucosal bleeding, hematoma and/or petechiae were recurring problems in children with leukemia requiring platelet transfusions in the home setting, however, not a single child developed massive external hemorrhage. More children with non HM needed morphine-based pain medication (33% vs. 54%). Overall, less drugs for symptom control either regular or on demand medication were needed in children with HM. All patients with HM were continued on palliative chemotherapy. Although anti-infectious prophylaxis was discontinued at the beginning of palliative home care, sepsis did not occur in any child.

Four of the HM patients died due to disease-related progressive weakness, one through an acute event (most likely intracranial hemorrhage), and one patient with a T-cell lymphoma and a large mediastinal mass died during palliative sedation.

Conclusions:

Children with hematologic malignancies who are referred to outpatient palliative care appear to have an equal length of care compared to other cancer patients. A lower number of medications (including morphine-based drugs) is necessary, however transfusion rates are higher. As might have been a fear of both parents and treating physicians, not a single child developed massive external hemorrhage. Better knowledge about the special symptoms and needs of children with hematologic malignancies will enable PPCTs to provide best possible care.