Development Of A Patient-Held Treatment Summary For Paediatric Cns Tumour Patients

Neuro-oncology(2020)

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Abstract BACKGROUND Following the Scottish Government Cancer Plan 2012–15(1) ‘End of Treatment’ summaries for paediatric oncology patients treated in SE Scotland have been successfully implemented. However, it became evident that the particular needs of patients with CNS tumours were not adequately captured on the standardised documentation. METHODS In view of these difficulties an alternative document was prepared specifically for this patient cohort by the multi-disciplinary team, including Nurse Specialists, Paediatric Neuro-oncology and Neuro-psychology. This was designed to be a flexible, fluid summary to be used for all such patients regardless of tumour grade or treatment modality and included those undergoing surveillance only. OUTCOMES: The document is primarily completed by the Neuro-Oncology Nurse Specialist alongside the patient and family, usually following initial treatment and is used alongside their holistic needs assessment. The document is circulated to all involved professionals, including Primary Care, and a copy is retained by the patient. This then provides a concise source of information detailing diagnosis and treatment, any specific ongoing sequelae and details of red flag symptoms to alert patients and health professionals to the potential of relapse or other associated significant health problems. These treatment summaries are currently being piloted and have been well received thus far. They will be formally audited in due course with the aim to use nationally throughout Scotland in future.
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