BackgroundCase management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD).MethodsA three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents.ResultsFour hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues.ConclusionsAll different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient’s and parent’s needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT.

BackgroundA national clinical practice guideline for pediatric palliative care was published in 2013. So far there are only few reports available on whether an educational program fosters compliance with such a guideline implementation. We aimed to test the effect of the education program on actual compliance as well as documentation of compliance to the guideline.MethodsWe performed a prospective study with pre- and post-intervention evaluation on compliance to the guideline of the nurse specialists of a pediatric palliative care team for case management at a children’s university hospital. Eleven quality indicators were selected from 192 recommendations from the pediatric palliative care guideline, based on frequency, measurability and relevance. The multifaceted education program included e-learning and an interactive educational meeting. Four e-learning modules addressed 19 patient cases on symptoms, diagnostics and treatment, and a chart-documentation exercise. During the interactive educational meeting patient cases were discussed on how to use the guideline. Documentation of compliance to the guideline in the web-based patient-charts as well as actual compliance to the guideline through weekly web-based parent reports was measured before and after completion of the e-learning.ResultsEleven quality indicators were selected. The educational program did not result in significant improvement in compliance for any of these indicators. The indicators “treatment of nausea”, “pain medications two steps ahead” and “pain medication for 48 h present”, measured through parent reports, scored a compliance beyond 80 % before and after e-learning. The remaining indicators measuring compliance, as well as six indicators measuring documentation by chart review, showed a compliance below 80 % before and after e-learning.ConclusionsThe multifaceted education program did not lead to improvement in documentation of compliance to the guideline. Parent reported outcome revealed better performance and might be the more adequate assessment tool for future studies.

Background A brain tumor is diagnosed in 25% of pediatric oncology patients and carries a 30% mortality rate. To increase proactive support of children with a progressive brain tumor, we obtained information on timing, duration, and management of symptoms in the palliative trajectory. Methods A retrospective review of medical charts of patients treated at a children's university hospital, who were dying from a brain tumor between May 2007 and September 2012. Results Thirty-four children were included. After 0–2480 days (median, 168 days) from initial diagnosis, incurable disease was evident, with death occurring after 1–603 days (median, 80 days). Palliative cancer-directed therapy was given to 23 (68%) patients. Early presenting symptoms were altered mobility, speech disorders, and loss of sight or hearing. The symptoms with the shortest duration were somnolence, dysphagia, and dyspnea. The most frequent symptoms were pain (91%), poor mobility (74%), and somnolence (71%). Pain necessitated a short period of intravenous treatment with morphine in 38% of patients, for a median 4 days, and sedation in 15%, for a median 2.5 days. Do-not-resuscitate agreements were discussed with all parents at 0–576 days before death (median, 50 days) and were agreed upon by 33 (97%) parents. Twenty-seven (79%) patients died at home, and one died in a hospice. Six (18%) patients were admitted for intravenous anticonvulsants, pain medication, and sedation until death. Conclusions This study reports specific information on the timing of occurrence and duration of symptoms. This information will provide support for pediatric oncologists in preparing parents and primary health care professionals and anticipating symptom management and timely end-of-life decision-making in the palliative care phase for children with a brain tumor.