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Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic

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Abstract

Purpose

Brain tumour patients may struggle to express their concerns in the outpatient clinic, creating a physician-focused rather than a shared agenda. We created a simple, practical brain-tumour-specific holistic needs assessment (HNA) tool for use in the neuro-oncology outpatient clinic.

Methods

We posted the brain tumour Patient Concerns Inventory (PCI) to a consecutive sample of adult brain tumour attendees to a neuro-oncology outpatient clinic. Participants brought the completed PCI to their clinic consultation. Patients and staff provided feedback.

Results

Seventy seven patients were eligible and 53 participated (response rate = 68 %). The PCI captured many problems absent from general cancer checklists. The five most frequent concerns were fatigue, fear of tumour coming back, memory, concentration, and low mood. Respondents used the PCI to formulate 105 specific questions, usually about the meaning of physical or psychological symptoms. Patients and staff found the PCI to be useful, and satisfaction with the instrument was high.

Conclusions

This study demonstrates the clinical utility of the brain tumour PCI in a neuro-oncology clinic. The combination of a brain-tumour-specific concerns checklist and an intervention to focus patient agenda creates a simple and efficient HNA tool.

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Acknowledgments

We are grateful to Prof. Rogers and his team for allowing us to adapt the PCI concept to neuro-oncology, and to Prof.Dr.Ir. Stiggelbout and Prof.Dr. Kievit in Leiden Universiteit Medisch Centrum, Netherlands, for their supervision of AN during the period of protocol development.

Funding

This study was funded by NHS Lothian Neuro-Oncology Endowment Fund.

Conflict of interest

None.

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Correspondence to Alasdair G. Rooney.

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Rooney, A.G., Netten, A., McNamara, S. et al. Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic. Support Care Cancer 22, 1059–1069 (2014). https://doi.org/10.1007/s00520-013-2058-2

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  • DOI: https://doi.org/10.1007/s00520-013-2058-2

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