Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic |
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Authors: | Alasdair G. Rooney Anouk Netten Shanne McNamara Sara Erridge Sharon Peoples Ian Whittle Belinda Hacking Robin Grant |
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Affiliation: | 1. Edinburgh Centre for Neuro-Oncology, Western General Hospital, Edinburgh, Scotland, UK, EH4 2XU 2. Leiden Universiteit Medisch Centrum, Leiden, The Netherlands 3. Edinburgh Cancer Centre, Western General Hospital, Edinburgh, Scotland, UK, EH4 2XU
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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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