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OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era
INTRODUCTION: Brain metastases are associated with high morbidity and mortality. With the implementation of effective treatments, long-term survival is possible for some patients. However, most patients still die of their disease. The uncertain prognosis and potentially high symptom burden make mana...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8351214/ http://dx.doi.org/10.1093/noajnl/vdab071.056 |
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author | Eggen, Annemarie C Bosma, Ingeborg Hiltermann, Thijo J N Hospers, Geke A P Reyners, Anna K L Jalving, Mathilde |
author_facet | Eggen, Annemarie C Bosma, Ingeborg Hiltermann, Thijo J N Hospers, Geke A P Reyners, Anna K L Jalving, Mathilde |
author_sort | Eggen, Annemarie C |
collection | PubMed |
description | INTRODUCTION: Brain metastases are associated with high morbidity and mortality. With the implementation of effective treatments, long-term survival is possible for some patients. However, most patients still die of their disease. The uncertain prognosis and potentially high symptom burden make managing these patients complex. We aimed to identify the unmet needs in the care of patients with brain metastases. METHOD: Consecutive patients with melanoma or NSCLC brain metastases completed questionnaires assessing distress (distress thermometer), quality-of-life (FACT-general), and information provided on potential symptoms, supportive care, and do-not-resuscitate code (study-specific questionnaire) between Nov’18-Nov’19. Separate focus groups were organized with patients with melanoma brain metastases, primary caregivers of deceased patients, and general practitioners. The results were discussed with hospital-based healthcare professionals to identify additional issues. RESULTS: Questionnaires were completed by 59 patients (25 melanoma, 34 NSCLC) at a median time after brain metastases diagnosis of 11.5 months (range: 0.7–88). Thirty-five patients (59%) experienced distress (distress thermometer ≥4), and 20 patients (34%) expressed interest in supportive care. Furthermore, 40 patients (68%) remembered being informed about potential brain metastases symptoms, and 18 patients (31%) would have liked more information on potential symptoms. Psychosocial support was offered to 31 patients (53%) and 17/51 primary caregivers (33%). Patients emphasized that, despite potential information overload, they preferred to be fully informed about potential symptoms, treatments including outcomes, and psychosocial support availability. Caregivers highlighted the caregiver burden and importance of advance care planning. General practitioners were keen for guidelines on brain metastases symptom management in the home setting. Hospital-based professionals advocated a structured approach, with early identification of palliative care needs and an overview of involved healthcare professionals. CONCLUSION: Our results highlight the need for structured, multidisciplinary management of patients with brain metastases with special attention to symptom and caregiver burden, information provision, and advance care planning. |
format | Online Article Text |
id | pubmed-8351214 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-83512142021-08-09 OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era Eggen, Annemarie C Bosma, Ingeborg Hiltermann, Thijo J N Hospers, Geke A P Reyners, Anna K L Jalving, Mathilde Neurooncol Adv Supplement Abstracts INTRODUCTION: Brain metastases are associated with high morbidity and mortality. With the implementation of effective treatments, long-term survival is possible for some patients. However, most patients still die of their disease. The uncertain prognosis and potentially high symptom burden make managing these patients complex. We aimed to identify the unmet needs in the care of patients with brain metastases. METHOD: Consecutive patients with melanoma or NSCLC brain metastases completed questionnaires assessing distress (distress thermometer), quality-of-life (FACT-general), and information provided on potential symptoms, supportive care, and do-not-resuscitate code (study-specific questionnaire) between Nov’18-Nov’19. Separate focus groups were organized with patients with melanoma brain metastases, primary caregivers of deceased patients, and general practitioners. The results were discussed with hospital-based healthcare professionals to identify additional issues. RESULTS: Questionnaires were completed by 59 patients (25 melanoma, 34 NSCLC) at a median time after brain metastases diagnosis of 11.5 months (range: 0.7–88). Thirty-five patients (59%) experienced distress (distress thermometer ≥4), and 20 patients (34%) expressed interest in supportive care. Furthermore, 40 patients (68%) remembered being informed about potential brain metastases symptoms, and 18 patients (31%) would have liked more information on potential symptoms. Psychosocial support was offered to 31 patients (53%) and 17/51 primary caregivers (33%). Patients emphasized that, despite potential information overload, they preferred to be fully informed about potential symptoms, treatments including outcomes, and psychosocial support availability. Caregivers highlighted the caregiver burden and importance of advance care planning. General practitioners were keen for guidelines on brain metastases symptom management in the home setting. Hospital-based professionals advocated a structured approach, with early identification of palliative care needs and an overview of involved healthcare professionals. CONCLUSION: Our results highlight the need for structured, multidisciplinary management of patients with brain metastases with special attention to symptom and caregiver burden, information provision, and advance care planning. Oxford University Press 2021-08-09 /pmc/articles/PMC8351214/ http://dx.doi.org/10.1093/noajnl/vdab071.056 Text en © The Author(s) 2021. Published by Oxford University Press, the Society for Neuro-Oncology and the European Association of Neuro-Oncology. https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) ), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com |
spellingShingle | Supplement Abstracts Eggen, Annemarie C Bosma, Ingeborg Hiltermann, Thijo J N Hospers, Geke A P Reyners, Anna K L Jalving, Mathilde OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era |
title | OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era |
title_full | OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era |
title_fullStr | OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era |
title_full_unstemmed | OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era |
title_short | OTHR-01. Unmet clinical needs in patients with brain metastases in the current treatment era |
title_sort | othr-01. unmet clinical needs in patients with brain metastases in the current treatment era |
topic | Supplement Abstracts |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8351214/ http://dx.doi.org/10.1093/noajnl/vdab071.056 |
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