In Brain News, Brain Tumour Data, Research News

Glioblastoma, the most aggressive form of primary brain tumour in adults, presents significant challenges for both patients and caregivers. With limited treatment options and an average survival time of 12-18 months, the journey of those affected has many physical, cognitive, and emotional hurdles. A recent study published in Neuro-Oncology Practice sheds light on the unmet needs of newly diagnosed glioblastoma patients in the UK and explores potential opportunities to address these gaps. This study, conducted by Helen Bulbeck, Karen Noble, Kathy Oliver, and Tina Mitchell Skinner, utilized the Delphi method to gather insights and achieve consensus on key issues from experts and stakeholders in the field.

What are the findings?

The study identified multiple critical areas where newly diagnosed glioblastoma patients and their caregivers face substantial challenges:

1. Diagnosis and Treatment

    • A high percentage of glioblastoma diagnoses occur through emergency departments, highlighting a need for better initial diagnostic pathways.
    • There is a notable lack of effective, personalized treatment options, which is a significant concern for both patients and healthcare providers.

2. Integrated Care and Support

    • Holistic care that addresses not only the medical but also the emotional and psychological needs of patients is insufficient.
    • Caregivers bear a high burden, often without adequate support systems to help them manage their responsibilities and emotional strain.

3. Access to Clinical Trials and New Treatments

    • Awareness and availability of clinical trials are limited, which restricts patients’ access to potentially life-extending or life-saving treatments.
    • The impact of COVID-19 has further exacerbated these issues, disrupting care routines and access to necessary treatments and support services.

4. Quality of Life and Beyond Treatment Support

    • Enhancing the quality of life for glioblastoma patients requires more comprehensive support that extends beyond medical treatment.
    • Measures to ease the burden on both patients and caregivers are essential, yet currently insufficient.

 

Implications for Patients and Caregivers

The findings underscore the urgent need for a multifaceted approach to glioblastoma care. This includes increased research funding as a greater investment in glioblastoma research is crucial to develop new, effective treatments and improve patient outcomes. Another element includes integrating holistic care practices that address physical, cognitive, and emotional needs can significantly enhance the quality of life for patients. Providing robust support systems for caregivers is also essential to help them cope with the demands and emotional toll of caring for glioblastoma patients, as well as efforts to raise awareness about available clinical trials and streamline access. This can offer patients more treatment options and hope for better outcomes.

 

How the Delphi Model Was Used

The Delphi method, used in this study, is a structured communication technique designed to achieve consensus among a panel of experts. Originally developed for business forecasting, it has been adapted for various fields, including healthcare, to develop professional guidelines and identify critical needs.

The process involves multiple rounds of surveys, with feedback provided between each round. In this study, patient advocacy experts from five brain tumour organizations in the UK participated in initial discussions to frame the survey domains. These domains included diagnosis, treatment, integrated care, support beyond treatment, quality of life, access to new treatments, access to trials, measures to ease the burden, and the impact of COVID-19.

 

Conclusion

The Delphi panel’s findings highlight the unmet needs of newly diagnosed glioblastoma patients and their caregivers in the UK. Addressing these needs requires a focused effort to increase research funding, improve comprehensive care, support caregivers, and provide better access to clinical trials. By focusing on these areas, we can work towards mitigating the challenges faced by those affected by glioblastoma, ultimately improving quality of life and treatment outcomes.

 

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If you or someone you love is living with a brain tumour and have any questions around this latest news, or want to access support, give us a call on 01983 292 405 or email hello@brainstrust.org.uk. You can also visit our little brainstrust website which features support for children affected by brain tumour.

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php