Patient information for cancer patients is acknowledged for its vital contribution to informed consent and a positive patient experience. It forms a measure to which UK oncology centres are held to account in the national cancer patient experience survey. It could be argued that this has driven the production of such information rather than it being designed to best meet the need of the neuro-oncology patient. With this in mind a YouTube channel was set up after consulting current High Grade Glioma patients on their preferred medium. Patients wanted short clips in a conversational style explaining aspects of their treatment and the pathway. They wanted it to be available in a medium that they were familiar with either s a podcast or YouTube shorts. The CNS team requested patients choose the name of the channel and began making short videos with patients and professionals on subjects suggested by patients. In twelve weeks, we have produced 23 videos, which have had 2282 views and 105 hours of watch time. The average person watches for two hours and forty-six minutes. It is possible to extrapolate from this that people are engaging with the content. The availability of information in this form has reduced the length of conversations and emails with the CNS’s pre-operatively. Patients have reported a greater sense of comfort from hearing other patient’s stories. The authors acknowledge there is not enough data available yet to formerly support this. In conclusion patient information should be designed to meet the needs of the patient not the guidance. It needs to be accessible to patients who have neurological impairments including changes in vision and concentration and provided in a medium that is current, visual and easily accessible.
Background As part of enhanced recovery after surgery in neuro oncology, carbohydrate loading drinks were reviewed to see if there were any benefits in administering this pre operatively, in particularly for patients for awake craniotomy electively. This method is currently used in colorectal and spinal teams within the trust. Carbohydrate loading drinks are clear, and can be consumed up to 2 hours before induction of anaesthesia. Currently reviewed for patients for awake craniotomy with the vision to implement for all patients planned for craniotomy, both asleep and awake. The concept of this drink, is that it helps with post-operative nausea and vomiting , insulin resistance, helps with energy boost which is helpful during awake craniotomies and potentially during their engagement with therapists post operatively and wound healing (Hausel J et al, 2005). This could essentially lead to safer discharge, reduced risk of wound infection and reduced length of stay. Material and Methods In a single centre, data for patients who have undergone awake craniotomies this year were abstracted. Patients planned for an awake surgery were prescribed carb-loading drinks. Due to the start date of this study, there were already a number of patients who have had their awake craniotomies without having carb-loading drinks prescribed. The data for both cohorts enabled comparison on engagement during and after awake craniotomies with therapists and length of stay. Results The current data collected has found that the average length of stay in the group who were not prescribed carbohydrate loading drinks pre operatively, had an average length of stay 7.2 days in total, 50% had experienced nausea and vomiting post operatively, which led therapists unable to perform assessments. 66% of patients in this group were found to have some form of difficulties engaging with the therapists during the awake phase of their craniotomies. Compared with patients who were prescribed the carbohydrate loading drink, the average length of stay was 4.6 days, with no post operative nausea and vomiting, no difficulties engaging with therapists post operatively. Conclusion Though the current data is of a small volume, carbohydrate loading pre-operatively can help patients for elective awake craniotomies and reduce length of stay in hospital, optimising their recovery in a fast yet safe manner to ensure they are in the best performance status prior to commencing oncology treatment. With further analysis into the use of carb-loading drinks pre-operatively, this can be used widely within neuro-oncology surgeries. Hausel J, Nygren J, Thorell A et al Randomized clinical trial of the effects of oral preoperative carbohydrates on postoperative nausea and vomiting after laparoscopic cholecystectomy. Br J Surg 2005; : 415-421. [PubMed] [Google Scholar]
AIMS There is a gap in supporting patients with sexual relationships and intimacy. The aim of this study is to establish if patients with a brain tumour feel they are able to ask questions and concerns about sex, relationships and intimacy following diagnosis; is there an unmet need and how can this be addressed. METHOD An anonymous survey was sent to patients known to a neuro-oncology team. Questions were in relation to their experiences of sex relationships and intimacy. Patients were asked if they had concerns about changes in their relationships since their diagnosis. They were also asked for their comments on the subject so we can better understand how as a service we can improve to ensure holistic care. RESULTS There are 40 responses. The majority of respondents had concerns about their relationship since diagnosis and that their relationships have changed. 57% were concerned about a physical relationship with a partner/ future partners. 50% agreed their physical relationship had changed. 45% of people agreeing their emotional relationships have changed. 38 out of the 40 people questioned, had not asked their clinical team for advice about sex and relationships. 46% suggested clinicians initiating these conversations. CONCLUSION Sex relationships and intimacy are significant for most adult populations, encompassing connection with their loved ones, self esteem and psychological and emotional well-being. With brain tumour diagnosis this part of people’s lives can hugely impacted. Historically clinicians have found this a difficult subject to discuss. Further work is required to understand the barriers initiating this subject
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