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Informational and Supportive Care Needs of Brain Metastases Patients and Caregivers: a Systematic Review

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Abstract

While brain metastases (BM) are associated with significant morbidity and mortality, the needs of BM patients and their caregivers (CGs) remain largely unknown. The purpose of this systematic review was to summarize (a) the informational needs of BM patients and CGs, (b) their supportive care needs, and (c) studies evaluating existing programs and resources addressing one or more of informational needs. A systematic search was conducted in four databases to identify studies, published from 2000 to April 2015, discussing informational or supportive care needs of BM patients and/or their CGs. Duplicate screening, data abstraction, and risk of bias assessments were conducted. Results were qualitatively summarized. From 973 references, seven studies fulfilled inclusion criteria. While physical and medical informational needs concerning prognosis, symptom management, treatment options, and side effects were reported, no studies exploring patient or CG social, emotional, or spiritual informational needs were identified. Discordance was observed between patient, CG, and health care professional perspectives on patient supportive care needs. One study evaluated an intervention addressing informational needs. Patients required information on prognosis, managing symptoms, and available treatment options and associated side effects. They needed support managing housework, pain, and fatigue. The findings of this study suggest an ongoing need to elicit psychosocial informational needs, supportive care needs, and a need for patient- and CG-centered resource development. Since ascertaining these needs is vital to the delivery of patient-centered care, efforts must be undertaken to explore these in the context of BM patients and CGs.

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Acknowledgements

We would like to thank Elizabeth Uleryk for doing the initial search on the databases.

Author information

Authors and Affiliations

  1. Patient and Family Education Program, Princess Margaret Cancer Centre, Toronto, ON, Canada

    Talha Maqbool, Arnav Agarwal, Aman Sium, Aileen Trang & Janet Papadakos

  2. Faculty of Medicine, University of Toronto, Toronto, ON, Canada

    Talha Maqbool & Arnav Agarwal

  3. Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada

    Caroline Chung

  4. ELLICSR: Health, Wellness & Cancer Survivorship Centre, Princess Margaret Cancer Centre, Toronto, ON, Canada

    Janet Papadakos

Authors
  1. Talha Maqbool
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  2. Arnav Agarwal
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  3. Aman Sium
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  4. Aileen Trang
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  5. Caroline Chung
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  6. Janet Papadakos
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Corresponding author

Correspondence to Janet Papadakos.

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The authors declare that they have no competing interests.

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Additional information

Talha Maqbool and Arnav Agarwal contributed equally to this work and are both considered “first authors”. Caroline Chung and Janet Papadakos contributed equally to the supervision of this work and are both considered “last authors”.

Electronic supplementary material

Below is the link to the electronic supplementary material.

ESM 1

Online Resource 1: search strategies (DOCX 25 kb)

ESM 2

Online Resource 2: risk of bias assessments for included studies (DOCX 15 kb)

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Maqbool, T., Agarwal, A., Sium, A. et al. Informational and Supportive Care Needs of Brain Metastases Patients and Caregivers: a Systematic Review. J Canc Educ 32, 914–923 (2017). https://doi.org/10.1007/s13187-016-1030-5

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  • DOI: https://doi.org/10.1007/s13187-016-1030-5

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