scholarly journals Are patients with brain tumours being given timely DVLA advice?

2021 ◽  
Vol 23 (Supplement_4) ◽  
pp. iv2-iv3
Author(s):  
Shumail Mahmood ◽  
Yazan Hendi ◽  
Hasan Zeb ◽  
Yasir A Chowdhury ◽  
Ismail Ughratdar
Keyword(s):  
Brain Tumour ◽  
Secondary Care ◽  
Brain Tumours ◽  
Tertiary Care ◽  
Queen Elizabeth Hospital ◽  
The Public ◽  
Primary Brain Tumour ◽  
The Uk ◽  
New Diagnosis

Abstract Aims Over 11,000 patients are diagnosed with a primary brain tumour annually in the UK, with many more being diagnosed with a secondary brain tumour. UK law stipulates that all individuals with a brain tumour must inform the Driver and Vehicle Licensing Agency (DVLA) and may be required to surrender their driving license depending on their specific tumour and symptoms. Despite this guidance, we found that patients continue to arrive at the neuro-oncology clinic without the correct DVLA advice being given. This can potentially lead to patients with brain tumours continuing to drive on the public highway, which poses a severe hazard as the risk of seizures could endanger the public. This retrospective study looks to review what information was provided to patients with brain tumours upon initial diagnosis and determine the adequacy of this; ultimately aiming to improve the quality of information given to future neuro-oncology patients. Method A structured questionnaire was designed, asking patients who have been treated for a brain tumour at the Queen Elizabeth Hospital in Birmingham about any information they received about driving when they were first diagnosed. The questionnaire comprised of 11 questions designed to gather an understanding of what information was given to patients about driving. The study secured local audit approval. 75 patients identified from the weekly neuro-oncology MDT list were contacted. All patients included in this audit were required to stop driving and inform the DVLA about their condition as per the DVLA guidelines. Their responses were collated and analysed. Using this data, we determined if there were inadequacies in the information that was given to these patients about driving, and how this process may be improved in the future. Results 60 patients (80%) possessed driving licenses when first diagnosed and 17% of these (n=10) were not told to stop driving; 8 of whom were diagnosed in primary/secondary care. 39 patients (65%) were first diagnosed in primary/secondary care, however, only 21% of these (n=8) were told to stop driving by primary/secondary care consultants. The remaining 31 patients (81%) were only told to stop driving after referral to tertiary care, by consultant neurosurgeons at the Queen Elizabeth Hospital. Conversely, of the 12 patients first diagnosed at the Queen Elizabeth Hospital, 85% were told to stop driving at diagnosis, suggesting a notable difference in informing patients between primary/secondary care and tertiary care. Patients also commented on the quality of the information received, as 10 individuals (21%) mentioned needing more information about getting their license back, and 5 individuals (11%) mentioning being given conflicting or incorrect information from different members of the MDT. Conclusion The results show that in practice, there are inconsistencies about mandatory DVLA advice which should be clearly provided to patients with a new diagnosis of a brain tumour. Only 78% of patients were told to stop driving at diagnosis, suggesting that the remainder could be liable to continue driving despite their diagnosis. Furthermore, many patients diagnosed in primary/secondary care are not being told to stop driving until after referral to tertiary care which can take weeks, causing delays in them being given this information, which can pose risks to themselves and the public. These delays may be alleviated by giving patients a simplified resource when they are first diagnosed which clearly explains the driving rules. We therefore propose developing a one-page resource based on DVLA guidance and distributing this to patients and referring healthcare professionals at first diagnosis. A subsequent re-audit can evaluate if this intervention improves the current situation.

Advocacy for brain tumours

2019 ◽  
pp. 281-290
Author(s):  
Riccardo Soffietti ◽  
Christine Marosi ◽  
Roberta Rudà ◽  
Wolfgang Grisold
Keyword(s):  
Brain Tumour ◽  
Brain Tumours ◽  
Primary Tumour ◽  
Symptom Burden ◽  
Neurological Complications ◽  
The Public ◽  
Cognitive Levels ◽  
Therapeutic Tools ◽  
Appropriate Education

Brain tumours include different entities in terms of pathology, clinical characteristics, and therapeutic options; however, all represent an important cause of morbidity and mortality. The symptom burden of brain tumour patients is extremely high, and the different phases of the disease (at diagnosis, after surgery, during the adjuvant treatments, when progressive disease) pose specific problems to be managed. Rehabilitation, both at physical and cognitive levels, is increasingly required following the improvement of overall survival. The neurological complications of systemic cancer can negatively impact the quality of life of patients while cured from their primary tumour. Many aspects in neuro-oncology require advocacy. Among them, the cooperation between physicians, nurses, and caregivers, and an appropriate education of medical professionals on how to best manage brain tumour patients are the most critical. Moreover, we must work to guarantee the access for all patients to the best diagnostic and therapeutic tools by lobbying the Public National and European Institutions.

scholarly journals Non-coplanar VMAT plans for postoperative primary brain tumour to reduce dose to Hippocampus, temporal lobe and cochlea: a planning study

BJR|Open ◽  
2021 ◽  
pp. 20210009
Author(s):  
Eva Yi Wah Cheung ◽  
Kevin Ho Yuen Lee ◽  
Wilson Tin Long Lau ◽  
Amy Pik Yan Lau ◽  
Pak Ying Wat
Keyword(s):  
Brain Tumour ◽  
Temporal Lobe ◽  
Brain Tumours ◽  
Contralateral Side ◽  
Plan Quality ◽  
Planning Study ◽  
Primary Brain Tumours ◽  
Primary Brain Tumour ◽  
Dose Constraints

Objectives: This study aimed to compare radiotherapy plan quality of coplanar VMAT (CO-VMAT) and non-coplanar VMAT (NC-VMAT) for postoperative primary brain tumour. Methods: A total of 16 patients who were treated for primary brain tumours were retrospectively selected for this study. For each patient, identical CT sets with structures were used for both CO-VMAT and NC-VMAT planning. For CO-VMAT, one full arc and two coplanar half arcs were used. For NC-VMAT, one full coplanar and two non-coplanar half arcs with couch rotation of 315° or 45°. Dose constraints were adhered to the RTOG0614 and 0933. Dose volumetric parameters were collected for statistical analysis. Results: There were no significant differences for the PTV, HI, CN and μ between the CO-VMAT and NC-VMAT. For the brainstem, Dmean of CO-VMAT and NC-VMAT were 6.04 ± 3.94 Gy and 4.69 ± 2.56 Gy respectively (p < 0.05). For the ipsilateral OARs including temporal lobe, TM joint and cochlear, Dmean of CO-VMAT and NC-VMAT were 31.80 ± 12.78 Gy and 25.51 ± 17.54 Gy (p < 0.01) ; 14.12 ± 8.6 Gy and 3.35 ± 4.12 Gy (p < 0.001); 11.96 ± 11.68 Gy and 6.62 ± 9.74 Gy (p < 0.01) respectively. For contralateral OARs including hippocampus, temporal lobe, TM joint, Optic nerve, lens, eyeball and cochlear, the Dmean of CO-VMAT and NC-VMAT were 6.16 ± 2.44 Gy and 4.49 ± 2.00 Gy (p < 0.01) ; 6.48 ± 2.76 Gy and 3.68 ± 1.76 Gy (p < 0.0001); 11.96 ± 11.68 Gy and 6.62 ± 9.74 Gy (p < 0.01) respectively. Conclusion: The proposed NC-VMAT showed more favourable plan quality than the CO-VMAT for primary brain tumours, in particular to OARs located to the contralateral side-of tumours. Advances in knowledge: For primary brain tumours RT, NC-VMAT can reduce doses to the brainstem, ipsilateral temporal lobe, TM joint and cochlear, as well as OARs located to the contralateral side-of tumours.

scholarly journals Using surgical and oncology workload to plan brain tumour trial recruitment in England

2019 ◽  
Vol 21 (Supplement_4) ◽  
pp. iv11-iv12
Author(s):  
Kerlann Le Calvez ◽  
Peter Treasure ◽  
Matt Williams
Keyword(s):  
Clinical Trials ◽  
Brain Tumour ◽  
Brain Tumours ◽  
Adult Patients ◽  
Trial Recruitment ◽  
Trade Off ◽  
Primary Brain Tumour ◽  
Rational Planning ◽  
The Brain ◽  
Over Time

Abstract Introduction Access to clinical trials is a common request for patients with brain tumours. However, opening clinical trials requires additional work per centre opened. We have previously shown that surgical and oncology workload varies between centres, and fluctuates over time. There is a trade-off between offering access to clinical trials and increasing costs associated with opening trials in centres that treat few patients. Methods We used two separate datasets from England covering 3 years – one for neurosurgical workload and one for radiotherapy. We only included adult patients and calculated cumulative proportions of the malignant primary brain tumour population (C71) by number of centres. We investigated stability by checking how many patients would have to be added/ removed from a centre to change their rank. Results There were 7061 surgical and 5060 radiotherapy patients. To capture 25% of patients, we would need to open trials in 4 surgical/5 radiotherapy centres; for 50%, 9 surgical/ 13 radiotherapy centres; for 75%, 16 surgical/ 24 radiotherapy centres. Centre rank was fluid: adding 16 surgical/9 radiotherapy patients would change the rank of a centre. Discussion These are the first data to allow for rational planning of trials in brain tumour patients. We have shown that we can reach 75% of the brain tumour population by opening trials in ~50% of surgical and radiotherapy centres. Centre rank alters over year, so we should be cautious about being too prescriptive. Nonetheless, these data should allow some rational planning of trial centre inclusion.

scholarly journals Developing guidelines for the management of brain tumour related epilepsy

2021 ◽  
Vol 23 (Supplement_4) ◽  
pp. iv3-iv4
Author(s):  
Elizabeth Vacher ◽  
Miguel Rodriguez Ruiz ◽  
Jeremy Rees
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Brain Tumour ◽  
Brain Tumours ◽  
Current Evidence ◽  
Low Grade ◽  
Clinical Nurse Specialists ◽  
Primary Brain Tumours ◽  
Low Incidence

Abstract Aims Brain Tumour Related Epilepsy (BTRE) has a significant impact on Quality of Life with implications for driving, employment and social and domestic activities. Management of BTRE is complex due to the higher incidence of pharmacoresistance and the potential for interaction between anti-cancer therapy and anti-epileptic drugs (AEDs). Neurologists, oncologists, palliative care physicians and clinical nurse specialists treating these patients would benefit from up-to-date clinical guidelines. We aim to review the current evidence to adapt current NICE guidelines for Epilepsy and to outline specific recommendations for the optimal treatment of BTRE, encompassing both primary and metastatic brain tumours. Method A comprehensive search of the literature from the past 20 years on BTRE was carried out in three databases: Embase, Medline and EMCARE. A broad search strategy was used and the evidence was evaluated and graded based on the Oxford Centre for Evidence-Based Medicine Levels of Evidence. Results All patients with BTRE should be treated with AEDs. There is no proven benefit for the use of prophylactic AEDs, although there are no randomised trials testing newer agents. Seizure frequency varies between 10-40% (Class 2a evidence) in patients with Brain Metastases (BM) and from 30% (high-grade gliomas) to 90% (low-grade gliomas) (Class 2a evidence) in patients with Primary Brain Tumours (PBT). In patients with BM, risk factors include number of BM and melanoma histology (Class 2b evidence). In patients with PBT, risk factors include frontal and temporal location, oligodendroglial histology, IDH mutation and cortical infiltration (Class 2b evidence). There is a low incidence of seizures (13%) after stereotactic radiosurgery for BM (Class 2b evidence). Non-enzyme inducing AEDs are recommended as first line treatment for BTRE, but up to 50% of patients with BTRE due to PBT remain resistant (Class 2b evidence). Conclusion The review has highlighted the relative dearth of high quality evidence for the management of BTRE, and provides a framework for further studies aiming to improve seizure control, quality of life, and indications for AEDs.

scholarly journals Missed opportunities for diagnosing brain tumours in primary care: a qualitative study of patient experiences

2019 ◽  
Vol 69 (681) ◽  
pp. e224-e235 ◽  
Author(s):  
Fiona M Walter ◽  
Clarissa Penfold ◽  
Alexis Joannides ◽  
Smiji Saji ◽  
Margaret Johnson ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Brain Tumour ◽  
Brain Tumours ◽  
Help Seeking ◽  
Patient Experiences ◽  
Missed Opportunities ◽  
North West ◽  
Primary Brain Tumour ◽  
Symptom Appraisal ◽  
Poor Outcomes

BackgroundBrain tumours are uncommon, and have extremely poor outcomes. Patients and GPs may find it difficult to recognise early symptoms because they are often non-specific and more likely due to other conditions.AimTo explore patients’ experiences of symptom appraisal, help seeking, and routes to diagnosis.Design and settingQualitative study set in the East and North West of England.MethodIn-depth interviews with adult patients recently diagnosed with a primary brain tumour and their family members were analysed thematically, using the Model of Pathways to Treatment as a conceptual framework.ResultsInterviews were carried out with 39 patients. Few participants (n = 7; 18%) presented as an emergency without having had a previous GP consultation; most had had one (n = 15; 38%), two (n = 9; 23%), or more (n = 8; 21%) GP consultations. Participants experienced multiple subtle ‘changes’ rather than ‘symptoms’, often noticed by others rather than the patient, which frequently led to loss of interest or less ability to engage with daily living activities. The most common changes were in cognition (speaking, writing, comprehension, memory, concentration, and multitasking), sleep, and other ‘head feelings’ such as dizziness. Not all patients experienced a seizure, and few seizures were experienced ‘out of the blue’. Quality of communication in GP consultations played a key role in patients’ subsequent symptom appraisal and the timing of their decision to re-consult.ConclusionMultiple subtle changes and frequent GP visits often precede brain tumour diagnosis, giving possible diagnostic opportunities for GPs. Refined community symptom awareness and GP guidance could enable more direct pathways to diagnosis, and potentially improve patient experiences and outcomes.

Exploring access to rehabilitation services from allied health professionals for patients with primary high-grade brain tumours

2011 ◽  
Vol 25 (8) ◽  
pp. 788-796 ◽  
Author(s):  
Aileen McCartney ◽  
Claire Butler ◽  
Sue Acreman
Keyword(s):  
Brain Tumour ◽  
Brain Tumours ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Primary Objective ◽  
Rehabilitation Services ◽  
Structured Interviews ◽  
Allied Health Professionals ◽  
Primary Brain Tumours ◽  
The Uk

Primary brain tumours account for less than 2% of cancer diagnoses in the UK but more people under 40 die from a brain tumour than from any other cancer. Despite developments in some treatment options, survival remains poor and patients suffer with considerable functional and cognitive deficits. Rehabilitation for patients with primary brain tumours produces statistically and clinically significant improvements in function. When compared, similar functional gains are made following rehabilitation for brain tumour patients and for those following stroke and traumatic brain injury. There have been very few studies looking at access to rehabilitation for this group of patients as a primary objective. However, existing studies and clinical experience suggest that patients with brain tumours do not access rehabilitation services frequently or easily, either locally or nationally. Therefore, this qualitative study addressed the reasons for this through semi-structured interviews of healthcare professionals, investigating their experiences of rehabilitation for this patient group and describing commonly identified barriers under key themes. The interviews gauged the views of eight healthcare professionals representing three professions in different settings, including hospital and community based. The resultant barriers fell under the following themes: professional knowledge and behaviours; services and systems; and the disease and its effects. Suggested solutions were wide ranging and included education, multidisciplinary meetings and specialist clinicians to co-ordinate care. The barriers to accessing rehabilitation for this group of patients are complex, but some of the solutions could be reached through education and co-ordination of services. Further research into the benefits of, and access to, rehabilitation for this group of patients is essential to ensure that patients with brain tumours are given opportunity to gain from the benefits of rehabilitation in the same way as other diagnoses, both cancer and non-cancer.

The diagnosis and management of metastatic bone disease in general practice

2021 ◽  
pp. 175573802110103
Author(s):  
Natalie Cheyne ◽  
David Nichols ◽  
Amit Kumar
Keyword(s):  
Quality Of Life ◽  
General Practice ◽  
Cancer Treatment ◽  
Bone Disease ◽  
Secondary Care ◽  
Early Recognition ◽  
Survival Rates ◽  
Metastatic Bone Disease ◽  
The Uk

As cancer treatment improves and survival rates continue to increase, clinicians are seeing increasing numbers of patients with metastatic bone disease (MBD). This term describes cancer that has originated in another organ and subsequently spread to the bone. It is a condition that can severely impact the quality of life for an individual and the treatment is often not curative. This article aims to cover the management of MBD, from early recognition to secondary care interventions. The care of individuals with MBD is evolving in the UK, with the development of specialist regional referral pathways to facilitate prompt and timely management.

scholarly journals QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii437-iii437
Author(s):  
Shelly Stubley ◽  
Anita Freeman ◽  
Christina Liossi ◽  
Anne-Sophie Darlington ◽  
Martha Grootenhuis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumour ◽  
Brain Tumours ◽  
Emotional Health ◽  
Health Related Quality ◽  
Childhood Brain Tumours ◽  
Related Quality ◽  
Health Related ◽  
Communication Needs

Abstract BACKGROUND Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explored family communication needs in survivors of childhood brain tumours receiving six-monthly follow-up outpatient review within the English NHS. METHODS Semi-structured interviews were conducted with 18 families whose child aged 8–17 years had finished treatment for a brain tumour within the preceding five years. Thematic analysis used the Framework Method. RESULTS Adjusting to change and finding a “new normal” was the overarching theme to emerge. HRQoL issues included fatigue, coping with physical changes, challenges at school, isolation, and adjusting to changes in abilities. Survivors described a need for greater knowledge about and more support with changes in cognitive functioning. Parents spoke about the impact on the wider family and their changed role in supporting the child’s HRQoL. Communication barriers included short-term memory loss, shyness, and the need to suppress or regulate emotions evoked by these issues. Communication needs included more information regarding recovery and rehabilitation and/or help managing anxiety or emotional health. CONCLUSION The above communication needs and barriers should be addressed. Having a digital record to document and monitor this information systematically could improve service planning and provide patients and their families with the resources to reach their full potential and experience a better HRQoL.

Know the symptoms: diagnosing a brain tumour early is key

2021 ◽  
Vol 2 (1) ◽  
pp. 10-11
Author(s):  
Sarah Lindsell
Keyword(s):  
Brain Tumour ◽  
Brain Tumours ◽  
Healthcare Professionals ◽  
Signs And Symptoms ◽  
Childhood Brain Tumours ◽  
Early Signs ◽  
The Uk ◽  
The Brain

Everyone has a role to play in reducing diagnosis times for childhood brain tumours, the biggest cancer killer of children and adults under 40 years old in the UK. The Brain Tumour Charity's HeadSmart campaign aims to inform parents and healthcare professionals about the key early signs and symptoms of brain tumours.

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