BACKGROUND: A recent report from the Brain Tumour Charity (BTC) found that 52% of patients with brain tumours felt the NHS did not give brain tumour patients the attention they required and 29% were dissatisfied with how health professionals addressed their condition. Poor information provision was one reason for low satisfaction. The 2014 NCPES report found that 25% of patients felt that side effects of treatment were not explained satisfactorily. METHODS: Service evaluation of Ninewells Hospital, Dundee was performed, between September 2015 and February 2016 at the CNS cancer outpatient clinic. The EORTC QLQ-INFO25 questionnaire was used to evaluate information provision to patients. Domains assessed included information relating to disease; medical tests; treatment; and other services. QLQ-INFO25 uses a 1–4 Likert scale with 1 representing the lowest level of information and 4 the highest. Scores were linearly converted to a 0–100 scale for the purposes of analysis. Patients were asked an additional eight ‘open’ questions to better allow patients to communicate their opinions and ideas relating to their care in a qualitative manner. RESULTS: Twenty-five patients returned questionnaires (eight patients left at least one question unanswered). Mean scores are reported for each question ±SD. The highest scores were for information relating to medical test results (87.3 ± 19.65), and to procedures of medical tests (84.85 ± 22.36). Lowest scores were for information received about causes of disease (36.84 ± 33.13) and about available rehabilitation services (43.33 ± 44.72). Other areas with low scores included information received about the effects of treatment on sexual activity (50.00 ± 36.60) as well as information about professional psychological support (48.48 ± 39.48). The overall score across all domains was 78.26 ± 23.80. 80% reported receiving written information at some point during their care. Responses to additional questions were largely positive and comments about staff complementary. Patients reported few difficulties getting to appointments. Three patients reported that the single thing done “less well during care” was the time to receive a scan/diagnosis. When asked what they would spend additional funding on, if available, 20% of patients said research into diagnosis and treatment. The remaining responses were variable, suggesting heterogeneity in CNS cancer patients’ priorities. 44% patients stated that nothing could be improved about their care. Possible improvements suggested included quicker scans, and for care to take place in a more local setting. CONCLUSIONS: It is unsurprising that levels of information provision are highest with regards to information received about medical tests and treatment, as most patients receive written information on these topics. The cause of CNS tumours is not completely understood, and so it is unsurprising that not all patients received this information. Information about other services may not always be addressed by the Ninewells hospital care team, as these services may be provided by other teams. These data will be used to implement changes to the CNS tumour service within Ninewells Hospital - particularly regarding psychological, social and sexual advice as well as other services - in order to improve information provision to patients in these highlighted domains.
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