brainstrust progress tracker

It is important that we can reflect on the areas where might be able to help you the most, and also understand the impact that we are having as we support you on your journey with a brain tumour. This is why we’ve created our brainstrust progress tracker. We ask all who contact us for help to complete this simple measurement tool at various points. Simply select the circle that best reflects how you feel in each of the six areas, with 5 being the best you can possibly feel about an area, and 1 the worst.

We strive to work with you to make sure you feel less alone; that you are part of a community; are on top of things; that you are feeling supported, are resourced; and are engaged with your clinical care.

Thank you for taking the time to do this.








    What resource(s) have you used? Please select all that apply

    Phone supportEmail supportLiteratureMeet upWorkshopBrain boxFacebook support group


      Engaged with clinical care
      Confident talking with my clinical team
      Knowing what questions to ask
      Knowing who to ask




      Less alone
      Less isolated
      Better connected
      Knowing how to get what I need from others



      Part of a community
      Being part of an online community
      Having a supportive network
      Knowing how to be involved



      On top of things
      Confident
      Proactive
      In control
      Comfortable with uncertainty



      Supported
      Listened to
      Knowing what I need
      Knowing who to ask for support



      Resourced
      Knowing where to go for help
      Knowing how to be involved
      Having the information I need
      Being able to act on the information




      What resource(s) have you used? Please select all that apply

      Phone supportEmail supportLiteratureMeet upWorkshopBrain boxFacebook support group


      opt in or miss out e1524663941895

      Your personal data is very important to us because it allows us to help people living with a brain tumour. Your details will only be used by brainstrust in adherence to our privacy policy. We will never give your information to other organisations without first seeking your specific consent. To manage the way that brainstrust contacts you please visit this page.

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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 cancerousNon-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