In Brain News, Research News

What is COBRA? Is it a snake? A crisis meeting held in the Cabinet Office Room A? A beer?

No – it’s way more important.

Clinical Outcome Assessment in Brain Tumour Trials (COBRA)

COBRA is a study that is well underway and due to be completed later this year. Brain cancer studies traditionally focus on tumour responses and overall survival. But there is growing recognition that studies need to consider high quality information about outcomes such as quality of life (QoL) and function, important to those living with a brain tumour. This is particularly relevant where survival benefits are modest. Results can then be related to patients’ own lived experience, allowing informed choices about care.

What are Patient Reported Outcomes?

Patient Reported Outcomes (PROs) are measures which are directly reported by patients and which reflect their personal experience of their disease and its treatment. They constitute one component of a group of patient focused measures collectively termed Clinical Outcome Assessments (COAs). Clinician Reported Outcome (ClinRO) measures, Observer Reported Outcome (ObsRO) measures and Performance Outcome (PerfO) measures are others (see figure 1). Use of PROs allows assessment of trade-offs between tumour responses and effects on patients.

We know that:

  •  many brain tumour trials gather PRO information but the vast majority either never report it, or don’t assess its importance alongside tumour response
  •  there’s no consensus on types of patient outcomes assessed, negating opportunities to compare results between studies, or combine powerful information across studies.

To remedy this, consensus is being sought from patients, families and researchers about essential domains of patient/family experience to be collected across every glioma (grades 2-4) trial. The consensus is producing a patient-oriented Core Outcome Set (COS) applied across UK studies. COS development in other conditions has improved the quality and consistency of information captured, facilitating data sharing to produce practice-changing results.

Figure 1. Examples of Clinical Outcome Assessments. COAs are based on patient, professional or carer assessment and interpretation. 

Why do we need this research?

The Brain Tumour JLA Priority Setting Partnership gives context to the priority of clinical research in this area. As such, there is increasing public and healthcare recognition of the need for interventions to demonstrate improvements in patient focused outcomes, such as symptoms, physical or cognitive function and quality of life.  

In addition, opportunities for public involvement in brain cancer studies are increasing with initiatives including the Tessa Jowell Brain Cancer Mission and the Tessa Jowell BRAIN-MATRIX study. It’s therefore more important than ever that individual studies capture the same core outcomes reported by, and most relevant to, patients/families. This will lead to the development of a comprehensive framework for patient centred outcomes within brain tumour studies.  

References 

  1. Top 10 priorities for clinical research in primary brain and spinal cord tumours. Final Report of The James Lind Alliance Priority Setting Partnership in Neuro Oncology. June 2015. 
  2. Armstrong TS, Gilbert MR. Net clinical benefit: functional endpoints in brain tumor clinical trials. Curr Oncol Rep 2007;9: 60–65. 
  3. Patient-Centered Outcomes Research Institute. Patient-centered outcomes research definition. Response to public input. Consensus definition as of Feb 15, 2012. Washington DC: Patient-Centered Outcomes Research Institute, 2012. http://www.pcori.org/assets/PCOR-Definition-Revised-Draft-and-Responses-to-Input.pdf (accessed 2 Jan 2019) 

 

If you would like to use your experience and insight to support clinical research, consider signing up to be a PRIME advocate for brainstrust.

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