Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study

Fia Cialdella; Eva E. van Grinsven; Steven H.J. Nagtegaal; Arthur T.J. van der Boog; Celeste C. Hinkert; Marion G. Jentink; Ernst J. Smid; An Claes; Catharina E. Kleynen; Tom J. Snijders; Filip Y.F. de Vos; Marielle E.P. Philippens; Martine J.E. van Zandvoort; Szabolcs David; Joost J.C. Verhoeff

doi:10.1093/nop/npaf105

Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study

Fia Cialdella^*
, Eva E. van Grinsven
, Steven H.J. Nagtegaal
, Arthur T.J. van der Boog
, Celeste C. Hinkert
, Marion G. Jentink
, Ernst J. Smid
, An Claes
, Catharina E. Kleynen
, Tom J. Snijders
, Filip Y.F. de Vos
, Marielle E.P. Philippens
, Martine J.E. van Zandvoort
, Szabolcs David
, Joost J.C. Verhoeff

^*Corresponding author for this work

Radiotherapy

Utrecht University
University Medical Centre Utrecht
Amsterdam UMC

Research output: Contribution to journal › Article › Academic › peer-review

2 Citations (Scopus)

3 Downloads (Pure)

Abstract

Background:

Brain metastases (BMs) affect >30% of patients with cancer. Beyond survival, quality of life (QoL), and disease progression are critical concerns for both patients and their caregivers. We present the design of COIMBRA (Cohort for patient-reported Outcomes, Imaging, and trial inclusion in Metastatic BRAin disease), clinical characteristics, and pre-radiotherapy QoL data for patients and caregivers.

Methods:

COIMBRA is an observational, prospective, single-center cohort at UMC Utrecht, the Netherlands, focusing on BMs patients planned for (fractionated) stereotactic radiosurgery (SRS) and their caregivers. We collected clinical characteristics, imaging, and QoL (patient and caregiver) data via patient-reported outcome (PRO) questionnaires. PROs include the EORTC QLQ-C30, BN20, EQ-5D-3L (including VAS), CFQ, HADS, MFI, and CSI. PROs were compared with reference values from the literature for healthy, cancer, and brain tumor populations.

Results:

From April 2019 to April 2023, 377 patients (50.4% male, median age 66 years) who received stereotactic radiosurgery, were included. Two hundred and seventy-six patients and 115 caregivers consented to PROs. Patients reported lower QoL compared to healthy individuals and primary brain tumor patients, with worse role- and cognitive functioning compared to patients with cancer. Pre-radiotherapy, 1/3 of the caregivers felt overwhelmed. Almost 40% of them report signs of anxiety, which is less than caregivers of cancer or primary brain tumor patients.

Conclusions:

These data from a large cohort of patients with BMs and their caregivers underscore the unique clinical profile of this vulnerable population. These findings highlight the urgent need for targeted support systems to address unmet needs of both patients and caregivers.

Original language	English
Pages (from-to)	262-275
Number of pages	14
Journal	Neuro-Oncology Practice
Volume	13
Issue number	2
DOIs	https://doi.org/10.1093/nop/npaf105
Publication status	Published - Apr 2026

Bibliographical note

Publisher Copyright:
© The Author(s) 2025. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

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Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregiversFinal published version, 2.23 MBLicence: CC BY

Cite this

Cialdella, F., van Grinsven, E. E., Nagtegaal, S. H. J., van der Boog, A. T. J., Hinkert, C. C., Jentink, M. G., Smid, E. J., Claes, A., Kleynen, C. E., Snijders, T. J., de Vos, F. Y. F., Philippens, M. E. P., van Zandvoort, M. J. E., David, S., & Verhoeff, J. J. C. (2026). Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study. Neuro-Oncology Practice, 13(2), 262-275. https://doi.org/10.1093/nop/npaf105

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title = "Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study",

abstract = "Background:Brain metastases (BMs) affect >30\% of patients with cancer. Beyond survival, quality of life (QoL), and disease progression are critical concerns for both patients and their caregivers. We present the design of COIMBRA (Cohort for patient-reported Outcomes, Imaging, and trial inclusion in Metastatic BRAin disease), clinical characteristics, and pre-radiotherapy QoL data for patients and caregivers. Methods: COIMBRA is an observational, prospective, single-center cohort at UMC Utrecht, the Netherlands, focusing on BMs patients planned for (fractionated) stereotactic radiosurgery (SRS) and their caregivers. We collected clinical characteristics, imaging, and QoL (patient and caregiver) data via patient-reported outcome (PRO) questionnaires. PROs include the EORTC QLQ-C30, BN20, EQ-5D-3L (including VAS), CFQ, HADS, MFI, and CSI. PROs were compared with reference values from the literature for healthy, cancer, and brain tumor populations. Results: From April 2019 to April 2023, 377 patients (50.4\% male, median age 66 years) who received stereotactic radiosurgery, were included. Two hundred and seventy-six patients and 115 caregivers consented to PROs. Patients reported lower QoL compared to healthy individuals and primary brain tumor patients, with worse role- and cognitive functioning compared to patients with cancer. Pre-radiotherapy, 1/3 of the caregivers felt overwhelmed. Almost 40\% of them report signs of anxiety, which is less than caregivers of cancer or primary brain tumor patients. Conclusions: These data from a large cohort of patients with BMs and their caregivers underscore the unique clinical profile of this vulnerable population. These findings highlight the urgent need for targeted support systems to address unmet needs of both patients and caregivers.",

author = "Fia Cialdella and \{van Grinsven\}, \{Eva E.\} and Nagtegaal, \{Steven H.J.\} and \{van der Boog\}, \{Arthur T.J.\} and Hinkert, \{Celeste C.\} and Jentink, \{Marion G.\} and Smid, \{Ernst J.\} and An Claes and Kleynen, \{Catharina E.\} and Snijders, \{Tom J.\} and \{de Vos\}, \{Filip Y.F.\} and Philippens, \{Marielle E.P.\} and \{van Zandvoort\}, \{Martine J.E.\} and Szabolcs David and Verhoeff, \{Joost J.C.\}",

note = "Publisher Copyright: {\textcopyright} The Author(s) 2025. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.",

year = "2026",

month = apr,

doi = "10.1093/nop/npaf105",

language = "English",

volume = "13",

pages = "262--275",

journal = "Neuro-Oncology Practice",

issn = "2054-2577",

publisher = "Oxford University Press",

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Cialdella, F, van Grinsven, EE, Nagtegaal, SHJ, van der Boog, ATJ, Hinkert, CC, Jentink, MG, Smid, EJ, Claes, A, Kleynen, CE, Snijders, TJ, de Vos, FYF, Philippens, MEP, van Zandvoort, MJE, David, S & Verhoeff, JJC 2026, 'Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study', Neuro-Oncology Practice, vol. 13, no. 2, pp. 262-275. https://doi.org/10.1093/nop/npaf105

TY - JOUR

T1 - Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers

T2 - A prospective cohort study

AU - Cialdella, Fia

AU - van Grinsven, Eva E.

AU - Nagtegaal, Steven H.J.

AU - van der Boog, Arthur T.J.

AU - Hinkert, Celeste C.

AU - Jentink, Marion G.

AU - Smid, Ernst J.

AU - Claes, An

AU - Kleynen, Catharina E.

AU - Snijders, Tom J.

AU - de Vos, Filip Y.F.

AU - Philippens, Marielle E.P.

AU - van Zandvoort, Martine J.E.

AU - David, Szabolcs

AU - Verhoeff, Joost J.C.

N1 - Publisher Copyright: © The Author(s) 2025. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

PY - 2026/4

Y1 - 2026/4

N2 - Background:Brain metastases (BMs) affect >30% of patients with cancer. Beyond survival, quality of life (QoL), and disease progression are critical concerns for both patients and their caregivers. We present the design of COIMBRA (Cohort for patient-reported Outcomes, Imaging, and trial inclusion in Metastatic BRAin disease), clinical characteristics, and pre-radiotherapy QoL data for patients and caregivers. Methods: COIMBRA is an observational, prospective, single-center cohort at UMC Utrecht, the Netherlands, focusing on BMs patients planned for (fractionated) stereotactic radiosurgery (SRS) and their caregivers. We collected clinical characteristics, imaging, and QoL (patient and caregiver) data via patient-reported outcome (PRO) questionnaires. PROs include the EORTC QLQ-C30, BN20, EQ-5D-3L (including VAS), CFQ, HADS, MFI, and CSI. PROs were compared with reference values from the literature for healthy, cancer, and brain tumor populations. Results: From April 2019 to April 2023, 377 patients (50.4% male, median age 66 years) who received stereotactic radiosurgery, were included. Two hundred and seventy-six patients and 115 caregivers consented to PROs. Patients reported lower QoL compared to healthy individuals and primary brain tumor patients, with worse role- and cognitive functioning compared to patients with cancer. Pre-radiotherapy, 1/3 of the caregivers felt overwhelmed. Almost 40% of them report signs of anxiety, which is less than caregivers of cancer or primary brain tumor patients. Conclusions: These data from a large cohort of patients with BMs and their caregivers underscore the unique clinical profile of this vulnerable population. These findings highlight the urgent need for targeted support systems to address unmet needs of both patients and caregivers.

AB - Background:Brain metastases (BMs) affect >30% of patients with cancer. Beyond survival, quality of life (QoL), and disease progression are critical concerns for both patients and their caregivers. We present the design of COIMBRA (Cohort for patient-reported Outcomes, Imaging, and trial inclusion in Metastatic BRAin disease), clinical characteristics, and pre-radiotherapy QoL data for patients and caregivers. Methods: COIMBRA is an observational, prospective, single-center cohort at UMC Utrecht, the Netherlands, focusing on BMs patients planned for (fractionated) stereotactic radiosurgery (SRS) and their caregivers. We collected clinical characteristics, imaging, and QoL (patient and caregiver) data via patient-reported outcome (PRO) questionnaires. PROs include the EORTC QLQ-C30, BN20, EQ-5D-3L (including VAS), CFQ, HADS, MFI, and CSI. PROs were compared with reference values from the literature for healthy, cancer, and brain tumor populations. Results: From April 2019 to April 2023, 377 patients (50.4% male, median age 66 years) who received stereotactic radiosurgery, were included. Two hundred and seventy-six patients and 115 caregivers consented to PROs. Patients reported lower QoL compared to healthy individuals and primary brain tumor patients, with worse role- and cognitive functioning compared to patients with cancer. Pre-radiotherapy, 1/3 of the caregivers felt overwhelmed. Almost 40% of them report signs of anxiety, which is less than caregivers of cancer or primary brain tumor patients. Conclusions: These data from a large cohort of patients with BMs and their caregivers underscore the unique clinical profile of this vulnerable population. These findings highlight the urgent need for targeted support systems to address unmet needs of both patients and caregivers.

UR - https://www.scopus.com/pages/publications/105038406589

U2 - 10.1093/nop/npaf105

DO - 10.1093/nop/npaf105

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AN - SCOPUS:105038406589

SN - 2054-2577

VL - 13

SP - 262

EP - 275

JO - Neuro-Oncology Practice

JF - Neuro-Oncology Practice

IS - 2

ER -

Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study

Abstract

Bibliographical note

UN SDGs

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