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

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Abstract

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.

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Data availability

The data that support the findings of this study are available from the corresponding author, [L.M], upon reasonable request.

Abbreviations

CNS:

Central nervous system

PS:

Palliative sedation

PC:

Palliative care

SEHOP:

Spanish Society of Pediatric Onco-Hematology

IQR:

Interquartile range

DIPG:

Diffuse intrinsic pontine glioma

VEGF:

Vascular endothelial growth factor

ITCC:

Innovative therapies for children with cancer

VPS:

Ventriculo-peritoneal shunting

NICE:

National Institute for Health and Care Excellence

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Author information

Authors and Affiliations

  1. Division of Pediatric Hematology and Oncology, Vall d’Hebrón Hospital, Pg. de La Vall d’Hebron, 119, 08035, Barcelona, Spain

    Maria Pérez-Torres Lobato, Lorena Valero Arrese, Anna Llort Sales, Luis Gros Subias & Lucas Moreno

  2. Palliative Care and Complex Chronic Patient Service, Sant Joan de Déu Hospital, Barcelona, Spain

    Lucía Navarro-Marchena

  3. Pediatric Palliative Care Unit, Niño Jesús Hospital, Madrid, Spain

    Iñigo de Noriega

  4. Division of General Pediatrics, Vall d’Hebrón Hospital, Barcelona, Spain

    Miriam Morey Olivé

  5. Pediatric Oncology Unit, Virgen del Rocio Hospital, Seville, Spain

    Palma Solano-Páez, Catalina Márquez Vega & Eduardo Quiroga-Cantero

  6. Methodological and Statistical Management Unit, FISEVI, Virgen del Rocio Hospital, Seville, Spain

    Eloísa Rubio Pérez

  7. Pediatric Oncology Unit, Gregorio Marañon Hospital, Madrid, Spain

    Carmen Garrido Colino

  8. Pediatric Oncology Unit, Donostia University Hospital, Donostia, Spain

    Miriam García Abos

  9. Pediatric Oncology Unit, Álvaro Cunqueiro Hospital, Vigo, Spain

    María Tallón García

  10. Palliative Care Unit, Virgen de La Salud Hospital, Toledo, Spain

    Beatriz Huidobro Labarga

  11. Pediatric Oncology Unit, Burgos University Hospital, Burgos, Spain

    Raquel Portugal Rodríguez

  12. Pediatric Oncology Unit, Montepríncipe Hospital, Madrid, Spain

    Blanca López Ibor

  13. Division of Pediatric Hematology and Oncology, Niño Jesús Hospital, Madrid, Spain

    Álvaro Lassaletta

  14. Pediatric Palliative Care Unit, Vall d’Hebrón Hospital, Barcelona, Spain

    Andrés Morgenstern Isaak

  15. Division of Pediatric Hematology and Oncology, Pediatric Cancer Center Barcelona, Barcelona, Spain

    Ofelia Cruz Martínez

Authors
  1. Maria Pérez-Torres Lobato
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Contributions

All authors contributed to the study conception and design. The first draft of the manuscript was written by MP-TL and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Lucas Moreno.

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All authors certify that they have no affiliations with or involvement in any organization or entity with any financial interest or non-financial interest in the subject matter or materials discussed in this manuscript.

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This retrospective chart review study involving human participants was performed in line with the principles of the Declaration of Helsinki and its later amendments or comparable ethical standards.

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Informed consent was not required since the study is retrospective, it doesn’t use identifiable private information or identifiable biospecimens and the research doesn’t involves any risk to the subjects.

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Pérez-Torres Lobato, M., Navarro-Marchena, L., de Noriega, I. et al. Palliative care for children with central nervous system tumors: results of a Spanish multicenter study. Clin Transl Oncol 26, 786–795 (2024). https://doi.org/10.1007/s12094-023-03301-7

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