Palliative care for children with central nervous system tumors: results of a Spanish multicenter study

• Maria Pérez-Torres Lobato ^[1] ; Lucía Navarro Marchena ^[2] ; Iñigo de Noriega ^[3] ; Miriam Morey Olivé ^[4] ; Palma Solano Páez ^[5] ; Eloísa Rubio Pérez ^[6] ; Carmen Garrido Colino ^[7] ; Miriam García Abos ^[8] ; María Tallón García ^[9] ; Beatriz Huidobro Labarga ^[10] ; Raquel Portugal Rodríguez ^[11] ; Blanca López Ibor ^[12] ; Álvaro Lassaletta ^[13] ; Andrés Morgenstern Isaak ^[14] ; Ofelia Cruz Martínez ^[15] ; Lorena Valero Arrese ^[1] ; Anna Llort Sales ^[1] ; Luis Gros Subias ^[1] ; Catalina Márquez Vega ^[5] ; Lucas Moreno ^[1] ; Eduardo Quiroga Cantero ^[5]
  1. [1] Division of Pediatric Hematology and Oncology, Vall d’Hebrón Hospital, Pg. de La Vall d’Hebron, 119, 08035 Barcelona, Spain
  2. [2] Palliative Care and Complex Chronic Patient Service, Sant Joan de Déu Hospital, Barcelona, Spain
  3. [3] Pediatric Palliative Care Unit, Niño Jesús Hospital, Madrid, Spain
  4. [4] Division of General Pediatrics, Vall d’Hebrón Hospital, Barcelona, Spain
  5. [5] Pediatric Oncology Unit, Virgen del Rocio Hospital, Seville, Spain
  6. [6] Methodological and Statistical Management Unit, FISEVI, Virgen del Rocio Hospital, Seville, Spain
  7. [7] Pediatric Oncology Unit, Gregorio Marañon Hospital, Madrid, Spain
  8. [8] Pediatric Oncology Unit, Donostia University Hospital, Donostia, Spain
  9. [9] Pediatric Oncology Unit, Álvaro Cunqueiro Hospital, Vigo, Spain
  10. [10] Palliative Care Unit, Virgen de La Salud Hospital, Toledo, Spain
  11. [11] Pediatric Oncology Unit, Burgos University Hospital, Burgos, Spain
  12. [12] Pediatric Oncology Unit, Montepríncipe Hospital, Madrid, Spain
  13. [13] Division of Pediatric Hematology and Oncology, Niño Jesús Hospital, Madrid, Spain
  14. [14] Pediatric Palliative Care Unit, Vall d’Hebrón Hospital, Barcelona, Spain
  15. [15] Division of Pediatric Hematology and Oncology, Pediatric Cancer Center Barcelona, Barcelona, Spain

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• Localización: Clinical & translational oncology, ISSN 1699-048X, Vol. 26, Nº. 3, 2024, págs. 786-795
• Idioma: inglés
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• Resumen

  • Background Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available.

    Objectives (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC).

    Methods Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor.

    Results 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2–9) and median age at death was 7 years (IQR 4–11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0–5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p = .01).

    Conclusion Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.