A prospective study on the characteristics and subjects of pediatric palliative care case management provided by a hospital based palliative care team.

BACKGROUND: Case 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). METHODS: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. RESULTS: Four 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. CONCLUSIONS: All 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.

Aspects and Intensity of Pediatric Palliative Case Management Provided by a Hospital-Based Case Management Team: A Comparative Study Between Children With Malignant and Nonmalignant Disease.

OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. RESULTS: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). SIGNIFICANCE OF RESULTS: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.

The timing, duration, and management of symptoms of children with an incurable brain tumor: a retrospective study of the palliative phase.

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.