Bridging the Gap: Development of a Patient Public Involvement Group

Aims Every year, the Queen Elizabeth Hospital Birmingham (QEHB) neuro-oncology team review over 2000 individuals with brain tumour. Patient and public involvement (PPI) has been fragmented to date. Initially we invited two patient advocates and a core group of allied health professionals to meet virtually to discuss development of a local PPI group, its aims, specific goals, and timescales to maintain momentum. In March 2021 we launched “BERTI: Brain tumour Education and Research paTient and public Involvement group, West Midlands”. Our inaugural meeting will be virtual in April 2021 and will be followed by three meetings per year. Method We developed information leaflets to promote the BERTI initiative. A membership form has been developed to record baseline information (non-clinical) e.g. contact details, which tumour type the individual is interested in, which aspect of BERTI they are interested in (Education, Research or Clinical service development). Patient advocates have reviewed all patient and public facing forms. All forms have been checked by Information Governance at QEHB to ensure General Data Protection Regulation compliant. Contact details and non-clinical data will be stored in a password protected database on a NHS computer network. Information to ensure members can unsubscribe from this group is easy to find and will be done immediately. A BERTI email account has been set up with a core group of professionals having access who are all fully trained in data protection and have GDPR certification. We will produce an annual BERTI newsletter. Results BERTI is a group for people affected by brain tumours in any way. We include patients, friends and family, health professionals and researchers who are committed to improving the care of people with a brain tumour. It is run between the QEHB and University of Birmingham (UoB). BERTI provides a forum to meet other people affected by brain tumours and - Share experiences;- Understand the condition better;- Work with clinical staff and researchers to improve clinical care and facilitate research for people living with brain tumours. We will meet three times per year, virtually at the moment but face to face once Covid restrictions ease. We will have a formal talks explaining certain aspects of brain tumour or research initiatives. Throughout, there will be dedicated time set aside for group discussions to promote a genuine two-way dialogue between health-care/research professionals and individuals affected by brain tumour. Conclusion The PPI group will be allowed to evolve rather than start out too prescriptive. It will capitalise on its strengths and skills of its composite members. There are no set models rather principles that will provide the foundations for a group which is supported to fulfil their specific purpose. The views of the PPI group will be presented at the quarterly Neuro-Oncology Multi-disciplinary team business meetings to provide a forum to discuss issues. We aim to foster a PPI friendly environment, deliver real engagement and involvement across the group.

Comparison of outcomes of neurosurgical operations performed before and during the COVID-19 pandemic: a matched cohort study.

OBJECTIVE: To determine how the first wave of the COVID-19 pandemic affected outcomes for all operatively managed neurosurgical patients, not only those positive for SARS-CoV-2. DESIGN: Matched cohort (pairwise method). SETTING: A single tertiary neurosurgical referral centre at a large UK Major Trauma Centre. PARTICIPANTS: During the first COVID-19 wave, 231 neurosurgical cases were performed. These cases were matched to cases from 2019. Cases were matched for age (±10 years), primary pathology and surgical procedure. Cases were excluded from analysis if either the age could not be matched to within 10 years, or the primary pathology or procedure was too unique. After exclusions, 191 cases were included in final analysis. OUTCOME MEASURES: Primary outcomes were 30-day mortality and postoperative pulmonary complications. Secondary outcomes included Glasgow Outcome Score (GOS) on discharge, length of stay (LoS), operative and anaesthetic times and grade of primary surgeon. An exploratory outcome was the SARS-CoV-2 status of patients. RESULTS: There was no significant difference between the pandemic and matched cohorts in 30-day mortality, pulmonary complications, discharge GOS, LoS, operative or anaesthetic times. There was a significant difference in the variation of grade of primary surgeon. Only 2.2% (n=5) of patients had a SARS-CoV-2 positive swab. CONCLUSION: During the first UK wave of the COVID-19 pandemic, the mortality, morbidity and functional outcomes of operatively managed neurosurgical patients at University Hospitals Birmingham were not significantly affected compared with normal practice. The grade of primary surgeon was significantly more senior and adds to the growing body of evidence that demonstrates how the pandemic has negatively impacted UK surgical training. Mixing COVID-19 positive, unknown and negative cases did not significantly impact on outcomes and indicates that further research is required to support the implementation of evidence-based surgical pathways, such as COVID-light sites, throughout the next stage of the pandemic.

Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (COVID-CNSMDT Study).

OBJECTIVES: Pressures on healthcare systems due to COVID-19 has impacted patients without COVID-19 with surgery disproportionally affected. This study aims to understand the impact on the initial management of patients with brain tumours by measuring changes to normal multidisciplinary team (MDT) decision making. DESIGN: A prospective survey performed in UK neurosurgical units performed from 23 March 2020 until 24 April 2020. SETTING: Regional neurosurgical units outside London (as the pandemic was more advanced at time of study). PARTICIPANTS: Representatives from all units were invited to collect data on new patients discussed at their MDT meetings during the study period. Each unit decided if management decision for each patient had changed due to COVID-19. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcome measures included number of patients where the decision to undergo surgery changed compared with standard management usually offered by that MDT. Secondary outcome measures included changes in surgical extent, numbers referred to MDT, number of patients denied surgery not receiving any treatment and reasons for any variation across the UK. RESULTS: 18 units (75%) provided information from 80 MDT meetings that discussed 1221 patients. 10.7% of patients had their management changed-the majority (68%) did not undergo surgery and more than half of this group not undergoing surgery had no active treatment. There was marked variation across the UK (0%-28% change in management). Units that did not change management could maintain capacity with dedicated oncology lists. Low volume units were less affected. CONCLUSION: COVID-19 has had an impact on patients requiring surgery for malignant brain tumours, with patients receiving different treatments-most commonly not receiving surgery or any treatment at all. The variations show dedicated cancer operating lists may mitigate these pressures. STUDY REGISTRATION: This study was registered with the Royal College of Surgeons of England's COVID-19 Research Group (https://www.rcseng.ac.uk/coronavirus/rcs-covid-research-group/).