Edinburgh Napier University

  BACKGROUND: A diagnosis of brain cancer affects nearly 10 000 adults per year in the United Kingdom and has a devastating impact. This is due to the poor prognosis as well as a significant symptom burden, which often includes neurocognitive deficits. It is essential, therefore, to have a comprehensive way to determine the needs of these patients. Holistic Needs Assessment (HNA) is widely used for other cancers, and is recommended for brain cancers. The aim of this study was to identify brain specific patient reported outcome measures and investigate the potential of these for HNA. METHODS: We searched four databases (Medline, CINAHL, BNI and Psychinfo), with no date limits, for studies published in English, and identified 1004 studies. After review, eight studies fulfilled our inclusion criteria; these reported the development of tools developed for a brain cancer population for use in a clinical setting and assessed more than one domain of need. COSMIN criteria, which have been developed through consultation with 57 experts, were used to assess the psychometric properties and they were also assessed against criteria for HNA. RESULTS: The studies which were included, reported the development of four tools. Two tools were developed as symptom assessment tools; the MD Anderson Symptom Inventory – Brain Tumor Module (MDASI-BT); and the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy-Brain Symptom Index (NFbrSI-24), which both demonstrated evidence of good or fair psychometric properties but would need further development to be used in HNA. The Supportive Care Needs Survey 34 plus brain subscale (SCNS34-BS) and Brain Patient Concern Inventory (PCI) were developed as HNA tools but lacked psychometric testing. CONCLUSION: While some progress has been made in the development of tools, the results indicate that no tools are adequate without further development for HNA assessment in brain cancer.