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handbook National Brain Tumour Registry Brain Tumour Patient Information Portal

This handbook has been produced to help you understand the Brain Tumour Patient Information Portal and the help available if you choose to access the tool.

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Supported by

User

handbook National Brain Tumour Registry Brain Tumour Patient Information Portal

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Contents

1.

Introduction

a. About the Brain Tumour Patient Information Portal What is it? Why is it needed? Why now? What next? Who’s involved? b. About cancer registration and the National Brain Tumour Registry (NBTR) i. What is cancer registration? ii. What is the National Brain Tumour Registry (NBTR)? iii. Who can access the information held in my local cancer registry and the National Brain Tumour Registry? iv. How accurate is the information held? c. Links to further information

2.

Benefits and considerations of using the Portal

a. b.

3.

Information security

a. b.

Benefits Considerations

2 2 2 3 3 3 4 4 6 7 7 8

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10 11

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Introduction Keeping your information safe

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4. How to use the Patient Information Portal

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a. Registering for a username and password b. First-time access c. Subsequent access d. Setting up other users on your account e. Lost/forgotten username or password f. What to do if you think your information is wrong g. How to suspend your account FAQs

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5.

Support

28

6. Glossary

37

iv

a. b.

Support following your diagnosis and during your journey Technical support

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Introduction

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Introduction

a. About the Brain Tumour Patient Information Portal

What is it?

The Brain Tumour Patient Information Portal is a free to use, secure online portal that allows brain tumour patients in England access to the information held about them by the National Brain Tumour Registry. You can sit down with your clinician and view records relating to your brain tumour including histopathology reports, imaging reports and information about your treatment.

Why is it needed?

The NHS has a vision for patients to be more actively involved in treatment decisions. They call it shared decision-making, and it has the principle of ‘no decision about me without me’ at its heart1. This means that if the patient wishes, they can be an active participant in discussions and decisions about their care with their clinicians. Having access to records relating to their brain tumour diagnosis and treatment means that brain tumour patients have lots of information to help them participate in this shared decision making. While not everyone wants to play an active role in their care, most surveys suggest that a majority do2.

1 Department of Health (12 July 2010) Equity and Excellence: Liberating the NHS, London, DH. 2 Flynn et al (2006). ‘A typology of preferences for participation in health care decision-making’. Social Science and Medicine, vol 63, no 5, pp 1158–69.

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The information on the Brain Tumour Patient Information Portal belongs to the patient and there is strong evidence that patients and carers value – and benefit from – receiving accurate and relevant information3. These benefits are listed in section 2 of this handbook.

Why now?

Helping patients to access their healthcare records is becoming more common and has well-documented benefits. These are described in the Department of Health information strategy – The Power of Information4. Patient empowerment and closer engagement with their care lies at the heart of the Brain Tumour Patient Information Portal. The concept also resonates with the principles of the NHS White Paper, Equity and Excellence: Liberating the NHS ‘no decision about me, without me’5 and the accompanying ‘Information Revolution’ Government proposals and discussion6,7.

What next?

The portal will be pilot tested at several sites across England before a national launch. During the pilot phase, we are seeking feedback from you and your healthcare professionals. Please send your feedback to: brainportal@myregistry.org.uk

Who’s involved?

National Brain Tumor Registry

In the first instance, the Brain Tumour Patient Information Portal will be developed as a small-scale pilot using data in the National Brain Tumour Registry (NBTR) – one of the site-specific registries that is

3 National Institute for Clinical Excellence (2004). Improving supportive and palliative care for adults with cancer: the manual. Available from: http://www.nice.org.uk/csgsp, p.70. 4 Department of Health (21 May 2012) The Power of Information, London, DH. 5 Department of Health (12 July 2010) Equity and Excellence: Liberating the NHS, London, DH. 6 Department of Health (18 October 2010) Liberating the NHS: An Information Revolution, A consultation on Proposals, London, DH. 7 British Computer Society (2011) Preparing the NHS for an Information Revolution: A report on the NHS information Revolution Consultation on Proposals, BISL, Swindon.

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part of the National Cancer Registry (see 1b for more information on cancer registries).

brainstrust, the Meg Jones brain cancer charity

The supportive community offers appropriate interpretation, support and advice on the information available on the portal. Much medical jargon and terminology is used in the records. If you choose to use your records to help you play an active role in your care, you may need help understanding them, so interpretation can be provided. brainstrust and the supportive community will also help allay any unnecessary anxiety.

The pilot also has the support of the National Cancer Intelligence Network (NCIN). NCIN is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes. It does this by improving and using the information collected about cancer patients for analysis, publication and research. Clinical groups and a number of charities including Macmillan, CRUK and those that represent specifically the brain tumour patient community have also supported development of the pilot

The pilot is being run in partnership with the national brain cancer charity, brainstrust. brainstrust is helping the National Brain Tumour Registry guide the development and content of the Portal, and provides the supportive community surrounding it.

b. About Cancer Registration and the National Brain Tumour Registry (NBTR) i. What is cancer registration?

Whenever someone is diagnosed with any form of cancer, the doctor or hospital records the relevant details. This applies to people of all ages, including children. Hospitals and doctors are required to pass this information on to the local cancer registry, but if you don’t want your information to be included in the register you can opt out. This will not affect your treatment.

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Why is cancer registration necessary?

Registration is the only way that we can see how many people are getting cancer and what types of cancer they have. Most countries in the world have a registration system and in the UK registration has been running for over 50 years. Registration shows whether the number of people getting cancer is going up or down so the health service can make sure the right services and staff are available in the right place.

The information registered is vital for research into cancer. Cancer registration is supported by all the main UK cancer charities. By working with cancer researchers we have been able to identify the causes of some cancers. We have also been able to look at how cancer patients are treated across the UK and how successful treatments have been for different types of cancer. Registration also helps us to make sure that cancer screening programmes are effective.

What do you need to know about me?

We need to know some details about you (such as your name, address, age and sex). We need these details to make sure we are recording the right information about the right person. We also need to know about the type of cancer you have, the treatment you are receiving or have already received and your progress. We need this information to help us to identify possible causes of cancer and to find out about the best treatments.

You do not need to do anything – your hospital or doctor will pass the relevant information to us during your care. If you do not want the cancer registry to hold this information about you, you can opt out and this will not affect the care you receive in any way. It may potentially have other implications however; if you want to discuss opting out of cancer registration please contact the director of your local cancer registry (details can be found on www.ukacr.org and a useful information sheet is available at www.ukacr.org/sites/default/files/faq_patient.pdf).

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ii. What is the National Brain and Central Nervous System Tumour Registry (NBTR)?

The NBTR is a new initiative within one of the established regional cancer registries (the Eastern Cancer Registration and Information Centre (ECRIC)). The NBTR has existed since 2010 and is a pilot scheme to test the idea of having national registries for specific tumour sites.

Like general cancer registries, the NBTR collects detailed information about tumours but only those arising in the brain, central nervous system (CNS), skull base or pituitary gland. Information is collected about both malignant and non-malignant tumours diagnosed in the UK. The NBTR will be the national resource supporting high quality care, audit and research for this group of tumours.

Why is it needed?

Compared to more common malignant tumours we know relatively little about brain and CNS tumours. This is because as a group they are relatively rare, so there is not as much information available to gather as there is for more common cancers. In addition there are over 130 different types of brain and CNS tumours, so the number of cases of each type of tumour may be very small. In order to understand these tumours better, we need to make sure that we have the best possible information about every single case. This will provide accurate and complete information about these cancers and their outcomes.

What information does it collect?

As with all cancer registration, the more information we have about specific tumours the better. We can use this information to understand brain and central nervous system (CNS) tumours and how to treat them most effectively. Because of this, we are constantly improving the information coming into the NBTR. The information needed has been agreed by a group of professionals including doctors who treat patients with brain tumours (this group is called the brain and CNS site-specific clinical reference group or SSCRG). In the future we will be collecting information including scan images and molecular biology.

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At present we collect information on: l

pathology (microscopic type)

l

imaging features (scan reports) of the tumour

l

the treatment received

l

the patient’s progress.

iii. Who can access the information held in my local cancer registry and the National Brain Tumour Registry?

As in all NHS organisations, access to information about patients is very strictly regulated within cancer registries. Staff deal only with identifiable data (information that can be linked to a specific person) if it is strictly necessary. If it is not necessary for the data to be linked to a person’s identity then the work is done using anonymised data. Cancer registries take data security very seriously and transfers of data are strictly controlled. Clinical staff and researchers requesting access to any cancer registry information must follow strict procedures and sign an agreement stating that they will safeguard the information and not use it for any other purpose.

Cancer registries comply with the requirements of the Data Protection Act 1998 regarding the receipt, storage and transfer of personal data. They also follow UK Association of Cancer Registries policies for the use of potentially personally identifiable information. For further details please see www.ukacr.org/data-confidentiality

iv. How accurate is the information held?

The information held by the cancer registry is obtained from a range of sources, including data sent directly from hospitals (‘data feeds’), hospital notes and general information. While every effort is made to ensure that this information is correct, occasionally errors will occur either at source or following the transfer of information into the registry record. This is not a frequent problem, but one of the benefits of the Brain Tumour Patient Information Portal is to allow patients to check the

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accuracy of their own information and let the cancer registry know if they think something is wrong. Improving the accuracy of the information held by the registries will improve the quality of research and cancer surveillance work.

c. Links to further information

Find out more about the NBTR at www.nbtr.nhs.uk

For general information about cancer registries, visit the UK Association of Cancer Registries website at www.ukacr.org

The Patient Information Forum Guide to Health Records Access gives a vision for the future of Personal Health Records, and an understanding of some of the challenges
and barriers which must be overcome in order to realise their full potential. You can view the guide at www.pifonline.org.uk/index.aspx?o=10909

For more information about brainstrust, visit www.brainstrust.org.uk

i http://www.ncin.org.uk/publications/data_briefings/cns_data_briefing.aspx (Accessed 17/7/12) General cancer registration information from UKACR leaflet ACR078: About cancer registration.

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Benefits and Considerations of using the Portal

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Benefits and Considerations of using the Portal a. Benefits i.

Your rights: Under the Data Protection Act 1998, you have a legal right to access your own personal, highly sensitive, healthcare records if you wish to. The Portal is free of charge as your records belong to you.

ii.

Improving data quality and context: No-one has more interest than you in ensuring that the data held about you by your clinical team is accurate and interpreted in context. Should, by any chance, any of your data on the Portal be wrong, you will be able to see, question and comment on it.

iii.

Help you to avoid surprises: Increased access to details about your brain tumour diagnosis and treatment will help you to more fully understand your own situation, help you to avoid surprises and prepare you better for what lies ahead.

iv.

Greater involvement in your care: The more information you have, the more able you are to research the most appropriate treatments. With this knowledge, you can take a more active part in the decisions made about you. You can keep track of your treatment progress and should you wish to, make sure you explore all the options and seek advice and opinions from others. This can improve your experience of treatment and care.

v.

Level the playing field: Having access to your own information can give you time and space to understand it. This can make you a more informed partner in discussions with your clinical team about your care. You will be able to ask more specific questions and get the answers to your questions.

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vi.

A central reference point: It is entirely up to you if and who you share your records on the Portal with. If you allow it, your GP or other healthcare professionals could access the information about your care, which is usually held by the hospital (your GP may or may not have received copies of this information already).

vii. Better communication with carers: If you wish, you could share your records with your carers and loved ones so they also have a better understanding of your diagnosis, and if you’re having any – your treatment. This will help you talk with them, help them talk to you, and ultimately help them to support you better. viii. Help to improve the information we have about the long-term effects of cancer: Having access to records means that patient outcomes and responses to interventions (e.g. radiotherapy, surgery, assessments) will be tracked more effectively. These will be held in your records on the Portal and with your consent this information will be there for the clinicians to see.

b. Considerations i.

Fear and anxiety: Your records contain sensitive information, and sometimes even unknown information, which upon reading may cause distress.

ii.

Added pressure: Being as informed as your clinical team about your care will be of value to many, but not all patients will want to see their clinical information. For some, even the knowledge that your own clinical information is available to you will cause anxiety. Others may wish to see it themselves, but not share it with their carers and family. It is important to remember that the Portal does not replace information sharing with your consultant. Accessing your records will always be your personal choice and you can suspend your account at any time – the portal is there to facilitate that access and provide access to a supportive online community managed by other patients and brainstrust.

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iii.

You may have difficulty understanding your records: Much of the information collected by the registry is technical. It focuses on the objective tests and investigations that underpin clinical diagnoses. As with any professional group, there will be a certain amount of technical jargon, which is there not to create obscurity, but as concise, unambiguous shorthand as commonly used in professional communication. Full explanations of these terms will be available alongside the Portal.

iv.

Risks to personal information: The information collected by the National Cancer Registry is collected from across the NHS and held on secure servers inside the NHS Network with very restricted access. All staff working in the Registry are regularly trained in information security and how to handle confidential patient data. They are bound by conditions of employment that include severe sanctions for breaches of confidentiality. None of your personal data held by the Registry will be made available through the Portal without your explicit consent.

v.

Added burden: For some patients, knowing that they have access to their medical records may make them feel like they should take more responsibility for decisions made about their care. Whilst this is empowering for some patients, it may feel burdensome for others.

vi.

Upsetting the relationship with your clinical team: You might be concerned that having increased access to your data could alter the relationship with your clinician, or that it might annoy them by using valuable time in a clinical consultation. Anxieties such as these are not unusual when initiatives suggest giving patients access to their own medical notes. We are unaware of any studies that show giving interested patients more information about their own case detracts from the quality of care1. The best clinical teams do this routinely and find that it enhances the relationship on both sides. Ignorance is bliss: knowledge is power – both options should be available to you.

1 H Tranberg, J Rashbass. (2004) Medical Records, Use and Abuse, Oxon: Abingdon, Radcliffe Medical Press. Over 70 patients and carers views sought in Spring 2012.

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vii. Resistance from clinicians: Clinical teams vary in their willingness to share information with their patients. Some health professionals will be unaware of the Brain Tumour Patient Information Portal. Some clinical teams will be concerned that explaining information to you will take up time that in their view could be more effectively spent, or that sharing too much information will cause you anxiety. However many clinical teams have found that by being open with you and spending time answering your questions improves the quality of the care and justifies the investment of time. It is for you to decide in partnership with your clinical team and supported by your family and carers, how much information you would like and how you will use it.

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Information Security

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Information Security

a. Introduction

Keeping information safe is a very high priority for cancer registries. There are already very strict procedures in place to prevent unauthorised access to personal information. These include physically and electronically protected data storage equipment, strict security for cancer registry buildings, comprehensive staff training on policies and procedures for the protection of information, and compliance with all relevant laws and policies. This high level of security extends to the Brain Tumour Patient Information Portal, which has been constructed to ensure that the only people who can see your information are you and those to whom you have given permission. However, this high level of security can only protect your information if you keep your password secret, so it is very important that you follow the guidelines for safe use of the internet (link to guidelines/keeping your information safe).

For further information, see www.ukacr.org/data-confidentiality

b. Keeping your information safe i. Access to your information

Your National Brain Tumour Registry information will not be added to the Brain Tumour Patient Information Portal until you have told us that you would like to access it. After you tell us that you have decided to see your information, we will copy your data into our secure system and you will be able to make an appointment with the Clinical Nurse Specialist

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(CNS) at your usual hospital. At this appointment, the CNS will make sure that you still want to look at your records and will then ‘unlock’ your information by confirming your identity within our system. This is to make sure that only you can access your records, and is a vital step in keeping your information safe. After the CNS has confirmed your identity, you will be able to look at your records alongside the nurse. After this appointment, you can access your records over the internet whenever and wherever you choose, using your username and password. Other users of the Portal will not be able to see your information unless you choose to show them.

See also section 1(b)iii – Who can access the information held in my local cancer registry and the National Brain Tumour Registry?

ii. Confidentiality

The rules about confidentiality of information held by the cancer registry and on the Brain Tumour Patient Information Portal are the same as for any other organisation within the NHS. The guiding principles are that staff should only see personal information if they cannot do their job without seeing it, and that this information must not be disclosed to anyone else unless there is a very good reason to do so. Members of staff receive regular mandatory training on confidentiality and information security, and take these issues very seriously.

Please consider your own role in maintaining the confidentiality of your information; our systems are only as good as your password security. Try to choose a strong password (see section 4a of this handbook).

iii. Preventing unauthorised access

We have designed the Portal with data security as one of the most important factors. All data is encrypted (coded) and transferred using state of the art data encryption systems designed for confidential information. Even if anyone managed to get through the access systems, they would not be able to read any information they found.

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The data storage systems keep your existing registry-held information separate from the information that you enter for your own use (e.g. in your journal). With the exception of quality of life surveys, information that you enter will not be recorded anywhere else but in your Portal account. It will not be visible to your clinical team or to registry staff (except sometimes to those directly working on the technical aspects of the Portal). Quality of life survey information will be stored separately from other data. This provides a valuable addition to the information we already have in the registry to help researchers to understand the effects a brain tumour has on a patient’s life. Your clinical team may also be able to see this information if you want them to. If you choose to make it available, this information could help your doctors to get a better picture of your overall health and wellbeing during and after your treatment.

iv. Processes and assurances

All public and private organisations which handle personal data are legally obliged to abide by the principles of good data handling and storage in the Data Protection Act 1998. The National Cancer Registration Service – Eastern Office, and HealthDataInsight (an associated community interest company) are registered with the Information Commissioner’s Office as data controllers. This means that they have extra responsibilities for making sure that data is handled correctly and that they can be prosecuted for breaches of the Data Protection Act. For more information about the Data Protection Act and the Information Commissioner, please see www.ico.org.uk

Information security processes within the host organisations for the Brain Tumour Patient Information Portal conform to the NHS Code of Practice for Information Security Management. www.connectingforhealth.nhs. uk/systemsandservices/infogov/codes/securitycode.pdf

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How to use the Brain Tumour Patient Information Portal

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How to use the Brain Tumour Patient Information Portal a. Registering for a username and password

Log on to www.myregistry.nhs.uk and follow the instructions to enter your email address and choose a username and password. Make sure you choose a strong password. Your records contain personal and sensitive information, so it’s important to keep them safe. You should take the same care with your health records as you do with online banking.

A strong password is, for example: secret; easy to remember, or kept somewhere safe; at least eight characters long; changed regularly; and only used for your patient information Portal account and nothing else. For more information and guidance on keeping your online records safe and secure, visit www.nhs.uk/records and www.getsafeonline.org.

b. First-time access

Before accessing your records on the Portal, it’s important that you understand the benefits so you can unlock the full potential of the Portal, but also the considerations that you should take into account. There are some things that could mean accessing your information isn’t for you right now. Please take a few moments to read ‘Benefits and Considerations’ in section 2 of this handbook.

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Having logged in to www.myregistry.nhs.uk (see above), you will be taken to the Brain Tumour Patient Information Portal homepage. You now have immediate access to Tools (i.e. calendar, contacts, notes and diary) and account admin area. Click ‘request access to records’. Your request will start being processed.

Your GP will receive an email to say that you’ve requested access to the Portal. He or she may not already know about the Portal, so with this notification the doctor can familiarise him or herself with the system in case you want to discuss it with them.

When your records are ready for you to view, you will need to log on for the first time with your Clinical Nurse Specialist or keyworker at your treatment centre. After verifying your identity, they will go through your records with you and answer any questions you have. After this appointment you will have full access to your records via the internet wherever and whenever you choose. To arrange this appointment please contact the clinical team at your treatment centre

c. Subsequent access Log in to www.myregistry.nhs.uk to see your records. This can be from any computer, at any time.

d. Setting up other users on your account

At the current pilot stage of the Portal, we don’t have the function built in to enable users to create secondary accounts. This will be a feature of the Portal in the future, because we feel you may wish to allow carers or other authorised people to view your records. At the moment you could allow others to view your records by simply showing them the screen when you are logged in. We do not recommend sharing your log in details.

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e. Lost/forgotten username or password

If you have forgotten your password or the email address that you used to create your account, please contact us by email at brainportal@myregistry.org.uk with a contact phone number. We will then arrange to reset your password.

f. What to do if you think your information is wrong

In any system it is likely that from time to time, mistakes will happen either through human error or computer problems. One of the benefits of the Portal is that you are able to check your data and verify that we have the right information about you and your treatment. This is important for the accuracy of information (such as how many people are getting cancer) that the Cancer Registry obtains from looking at the millions of records that are held. If you notice that some of your information is wrong, please contact us using the contact us form, telling us what you think is wrong and what the information should be. We will then investigate your record and update your details if we agree that an error has been made.

g. How to suspend your account

You have the right to suspend your account at any time, for any reason. If you wish to do this, send us a request through the Contact Us form and we will suspend access to your account within 3 working days. When asking for account suspension please let us know if you wish for your information to be permanently removed from the site, or if you prefer the information to stay there but for current passwords to be made invalid (making it easier for you to resume access in the future if you choose to do so).

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FAQs

1.

About

Who is involved in the Brain Tumour Patient Information Portal?

The Portal is being developed as a small-scale pilot using data in the National Brain Tumour Registry (NBTR). The pilot is being run in partnership with brainstrust, the Meg Jones brain cancer charity, which provides the supportive community surrounding the Portal. For more information on NBTR and brainstrust, see section 1a. The pilot has the support of the National Cancer Intelligence Network (NCIN), clinical groups and a number of charities including Macmillan, CRUK and those that represent specifically the brain tumour patient community.

2.

Why have I been invited to register on the Brain Tumour Patient Information Portal?

The Portal is being developed as a small-scale pilot using data in the National Brain Tumour Registry (NBTR). There are three pilot sites in Cambridge, Norwich and Leeds. You’ve been invited to register because you’ve received treatment for your brain tumour in one of these hospitals. Whether you register or not is entirely up to you – either way, it won’t affect the care you receive in any way. For more information as to why you may or may not wish to access your records, please see section 2, ‘Benefits and Considerations’.

3.

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What is cancer registration?

Cancer Registration is the only way that we can see how many people are getting cancer and what types of cancer they have. Registration shows whether the number of people getting cancer is going up or down so the health service can make sure the right services and staff are available in the right place. The information registered is also vital for research into cancer. For more information on registration, see section 1b. Further details can be found on www.ukacr.org and a useful information sheet is available at: www.ukacr.org/sites/default/files/faq_patient.pdf

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4. How accurate is the information held?

Every effort is made to ensure that the information is correct. Occasionally errors occur either at source or following the transfer of information into the registry record. This is not a frequent problem, but one of the benefits of the Brain Tumour Patient Information Portal is that patients can check the accuracy of their own information and let the cancer registry know if they think something is wrong. Improving the accuracy of the information held by the registries will improve the quality of research and cancer surveillance work.

5.

Who can access information held by the Cancer Registry?

Clinical staff and researchers can request access to any cancer registry information, but they must follow strict procedures. As in all NHS organisations, access to information about patients is very strictly regulated within cancer registries. Cancer registries comply with the requirements of the Data Protection Act 1998 regarding the receipt, storage and transfer of personal data. They also follow UK Association of Cancer Registries policies for the use of potentially personally identifiable information. For further details see section 1b iii and www.ukacr.org/data-confidentiality

6. Does my GP know about the Brain Tumour Patient Information Portal?

Although we have publicised the Portal to GPs, family doctors are sent a vast amount of information every day so your GP may not be aware of the Portal in advance. However, once we receive your request to access your records through the Portal, we will notify your GP. The doctor can then familiarise him or herself with the system in case you have any questions about your information. If you don’t want your GP to know that you have accessed your records on the system, let us know via the Contact Us page before you submit your access request.

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Help and Support Available 1.

How can I talk to others in my situation?

brainstrust has a warm and friendly community through which you can get in touch with other brain tumour patients. This includes real world and online networking. You can find out how to go about this by getting in touch with brainstrust. Email hello@brainstrust.org.uk, call 01983 292 405 or visit www.brainstrust.org.uk/community.php

2.

Who can I turn to for support?

Your Clinical Nurse Specialist, Consultant and GP should be your first port of call. You can also get in touch with the support team at brainstrust. In addition to helping you to interpret your records on the Portal, brainstrust believes that you have the capacity to take control of your situation so that you can secure the best possible outcome following your brain tumour diagnosis. When you are diagnosed with a brain tumour there’s an awful lot to learn and, on occasion, not much coordinated support and information to help you make the right decisions about your care. brainstrust will help you through this. Email hello@brainstrust.org.uk, call 01983 292 405. For more information, see section 5a of this handbook.

3.

What should I do if I need help using the Brain Tumour Patient Information Portal?

After verifying your identity with your Clinical Nurse Specialist at your treatment centre (see 4b), they will go through your records with you and answer any questions you have. After this appointment you will have full access to your information via the internet wherever and whenever you choose. If you need any further help using the Portal please contact us using the Contact Us form on the Portal, providing details of the problem and contact details so we can get in touch with you.

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Technical Information 1.

Can I share my records with others?

At the current pilot stage of the Portal, there is no function built in to allow users to create secondary accounts. This will be a feature of the Portal in the future, because we feel you may wish to allow carers or other authorised people to view your records. At the moment you could allow others to view your records by simply showing them the screen when you are logged in. We do not recommend sharing your log in details.

2.

How do I suspend or cancel my account?

You have the right to suspend your account at any time, for any reason. If you wish to do this, Send us a request through the contact us form and we will suspend access to your account within 3 working days. When asking for account suspension please let us know if you wish for your information to be permanently removed from the site, or if you prefer the information to stay there but for current passwords to be made invalid (making it easier for you to resume access in the future if you choose to do so).

3.

What if I find the information about me is wrong?

In any system it is likely that from time to time, mistakes will happen either through human error or computer problems. One of the benefits of the Portal is that you are able to check your data and verify that we have the right information about you and your treatment. This is important for the accuracy of information (such as how many people are getting cancer) that the Cancer Registry obtains from looking at the millions of records that are held. If you notice that some of your information is wrong, please contact us immediately using the contact us form, telling us what you think is wrong and what the information should be. We will then investigate your record and update your details if we agree that an error has been made.

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4. Will I need specific software to access the Patient Information Portal at home?

You will not need any additional software to access the Portal. You will need a computer that has an internet browser installed (such as Internet Explorer, Safari, or Firefox – others are available). Internet Explorer should be version 8 or later, so that the Portal functions correctly and for security reasons.

5.

Can I print out the information on the Patient Information Portal?

Depending on the browser you are using, the print option in the internet browser menu will allow you to print pages from the Portal. Alternatively you could use the ‘print screen’ option built into your computer’s operating system – this will print an image of the screen at that time. Don’t forget to keep any pages you print out safe, if you don’t want others to see them.

6. Can I access the Brain Tumour Patient Information Portal from my smart phone?

Yes, we aim to make accessing the Portal as convenient as possible, including through mobile devices. If you have problems accessing the Portal on your device please let us know through the contact us form, indicating the make and model of your device and the particular problems you’re having.

Security

1.

What should I do if I suspect that someone else has accessed my account without my permission?

It’s important to keep your password safe. Do not share this with anyone. However, if you suspect that someone had accessed your account, change your password and let us know through the Contact Us form.

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1.

2.

1.

My Records

What records can I view on the Brain Tumour Patient Information Portal?

Records currently available through the Portal include full pathology (tissue sample) reports, summaries of imaging (scan) reports, information about your attendances at hospital and the treatment you’ve received for your tumour (see section 1b ii). You cannot see scan images on the Portal. The type and quantity of information that flows through the NHS is changing, and we will incorporate more information into the Portal as it becomes available. (Please note that the information on your records may be very technical, or include medical jargon. You can ask your Clinical Nurse Specialist or brainstrust if there is anything you don’t understand).

Does the Patient Information Portal give me access to all the data held by the NHS about me?

No. The Portal can only give you access to the information held about your tumour by the National Brain and Central Nervous System (CNS) Tumour Registry. There is no information about any other medical conditions you may have. It is important to note that the portal is not a copy of your medical notes and only some of the data held by the NHS about you is available. Some of the data held by the NHS about you – letters from clinic appointments, and the notes that doctors and other health professionals make about you while you are in hospital – are not available to the cancer registry so these will not be visible through the Portal. If you want to see your full medical record, you are entitled to contact the hospital that holds your record and ask to view your notes.

Other

Can I send a message to my clinical team through the Portal?

No. If you need to contact your clinical team, you should use the phone numbers that you will have been given at your first appointment.

2.

Where can I find my NHS number?

If you need your NHS number, you can find it at the top of all hospital correspondence, or ask your GP. Patient Information Portal: User handbook

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Support

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Support

a. Support following your diagnosis and during your treatment

It is important that you feel supported and resourced throughout your journey. brainstrust’s support services and access to the Brain Tumour Patient Information Portal are freely available to you at all times. You may find that there are distinct times when you want access to your records, and that different support tools are more relevant and valuable to you at different periods. Here are some suggestions as to different points in your journey that you may wish to access your records, and examples why. At the bottom are examples of the support resources you can draw on. They are always there waiting for you when you need them.

Points on my journey

Why might I want to access my information via the Brain Tumour Patient Information Portal?

Diagnosis

After you’ve received your scan results from a clinician, you may wish to read over the scan report in your own time. Or you may wish to let your loved ones have a look to help them fully understand. When you are told ‘you have a brain tumour’, it can be hard to remember what else is said. You might want to read the scan report for yourself to check you didn’t miss anything.

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Receiving You may wish to revisit the pathology report your histopathology consultant has given you. Using the Portal, you can do this with as much time as you need, and in the comfort of your own home. You may also wish to share it with your loved ones to keep them involved.

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Before treatment

You may wish to seek a second opinion. Maybe even a third or fourth (if it won’t delay urgent treatment). This can reassure you that your current care pathway is the right one, or it may give you more options. You could share your records with another healthcare professional so they have the best possible understanding of your case to help inform their opinion.

Follow-up

It can be difficult to remember all of your treatments. The dates, names, cycles, duration and so on. All of this information will be at your fingertips in the Portal should you wish or need to see it. Even though healthcare professionals have access to your records, it can be useful to take your records with you.

Survivorship

If you are living with or beyond your brain tumour, you are a survivor. This can mean having an inoperable brain tumour, or living a brain tumour free life having experienced surgery and adjuvant therapies. You may find it useful to continue to access your records in case at some point your situation changes. Cancer survivors can face all kinds of challenges as a result of their diagnosis and treatment, from physical, emotional, social, spiritual, through to financial challenges.

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Palliative care

Palliative care is not the same as end of life care. In this phase you will be no longer responsive to curative treatment. You will be living with your brain tumour, and may do so for a very long time. The focus in this phase of treatment should be on making the most of life and managing symptoms so you can lead a good quality of life. Having access to your records at this stage will help you to track any changes in your circumstances and will enable you to keep your healthcare team up to speed with current information about your situation.

End of life care

At some point treatment options may run out and the patient may have passed through the palliative care phase to end of life phase. At this stage in the last hours or days of life, the doctors and nurses may use the model of care called the Liverpool Care pathway (LCP). The LCP is tailored to a person’s individual needs and includes consideration of their physical, social, spiritual and psychological needs. It requires senior clinical decision making, communication, a management plan and regular reassessment. If you have granted your loved ones access to your records on the Portal, they may choose to look at them in this phase so that appropriate people involved in your care can look after you in the best possible way.

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Support available for you and your carer, provided by brainstrust

brainstrust is a charity registered in England (no. 1114634). Their aim is to give everyone diagnosed with a brain tumour access to the resources that will put them back in control.


brainstrust’s coaching based relationship with brain tumour patients and carers enables you to develop your own resilience and to utilise brain tumour support resources from all providers to their full potential.

Here are some of brainstrust’s support resources that are available to you:

www.brainstrust.org.uk

The brainstrust website has a wealth of information on it. You can be assured that the information you are reading has been developed using a process approved by the English Department of Health and is stamped with the Information Standards logo.

24/7 phone line

‘Thank you for being there, at silly ‘o’ clock this morning’ (Patient, 2012)

Coaching

We know that you don’t just need to talk to someone 9-5. We’ve been there and know the fears and the need to talk to someone who understands at all hours. That’s why you can call us anytime. Open 24 hours a day, 7 days a week, the brainstrust support line offers brain tumour patients and carers support, information and pragmatic advice over the phone and by email.

At brainstrust we listen, listen some more and then ask questions. We focus on achieving specific immediate goals, which relate to specific areas. For example, weighing up the pros and cons of having a particular treatment, or overcoming a problem with caring. We also know that through coaching, clients can experience a sense of healing, as they make

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courageous decisions about their lives and work. Coaching focuses on the future and the development of a workable solution. It’s about developing strategies and clarity to achieve a better quality of life.

Counselling

Counselling comes into play when there is too much distress and a psychological intervention is needed. Something is wrong and needs fixing. It is suitable for someone who is struggling to cope or feeling very anxious or depressed. Counselling has a broader focus and greater depth than coaching. It is concerned with the individual and with the relationship between them and context in which they operate – family and community. Its key difference is that it begins with a problem and focuses on the past. It explores how these are preventing the person from moving on and breaking free from problems and issues that have held them back. A counsellor may need to address psycho – social issues which would be beyond the scope of a coach.

Brain box

The brainstrust brain box – the ‘must have’ support toolkit for people with a new brain tumour diagnosis and their carers.

‘It provided a real beacon to them in an otherwise very bleak time. In all, it provided a huge impetus to us all to take control’ (Carer, 2012)

We appreciate how difficult things can be once you are diagnosed with a brain tumour; the ‘4.00am moments’, the travelling to and from appointments, the stream of questions that pop into your head, trying to remember the jobs of all the people that you’ll meet on your journey, and knowing who to turn to and when. A juggling act that you don’t need when you just want to focus your energy on feeling better. So to assist brain tumour patients, we’ve launched this unique invaluable aid

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to keeping on top of things. The brainstrust tool-box shaped ‘brain box’ contains a number of essential things to support and provide information for brain tumour patients and their carers.

Snaggle Tooth Splat

Written for brainstrust to help parent carers or patients broach a brain tumour diagnosis with their children. It is a beautifully illustrated book and has featured in the BMA newsletter and Oncology news. The forward has been written by the lovely actress and brainstrust supporter, Julie Walters. 
If you are a parent who has been diagnosed with a brain tumour, or are looking after a poorly little patient, then you can have a copy of this book, for free.

Written by Karen Boswell Illustrations by Jason Mortimer

Meet Up

At a brainstrust Meet Up, members of the brain tumour community get together to have fun. No matter where you are on your journey or what role you have (such as carer, patient, health care professional) you can share experiences, and seek information from people who know what you’re going through. But only if you want to. Feel free to just come along and enjoy.

‘It’s a fabulous group, helpful, friendly and it feels like you’ve known them for years. Wonderful source of information and help’ (Carer, 2012)

Past Meet Ups have involved pizza and wine, pub grub, and cream teas. And what’s more, it’s all on us!

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www.braintumourhub.org.uk

Created for brain tumour patients and carers, the brain tumour hub is an authoritative, easy to navigate database of brain tumour support resources and UK based brain tumour clinical trials. It is intuitive, easy to use, developed with clinicians, patients and carers, and constantly evolving with regular updates.

the little

white book A compendium support resourceof brain tumour s

Edition 1: Septem

ber 2011

Little White Book

A comprehensive, easy to navigate compendium of UK brain tumour support resources.

brainstrust forum www/brainstrust.org.uk/forum

facebook brainstrust brain tumour support group

With sections for patients and carers, the forum is a great place to get talking, seek support and answers to all sorts of questions. If you are on facebook, you can join this closed support group where a lot of very friendly patients and carers hang out. It is a really warm and welcoming group who will comfort you, answer questions, make you smile, and importantly are in the same boat as you.

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5b Technical support

If you need help with using the portal, please check the FAQ (Frequently Asked Questions) section. If your problem is not addressed here, please email us on brainportal@myregistry.org.uk explaining your problem and we will get back to you as soon as possible. It would help us if you could include a contact phone number and a description of your problem including which internet browser you are using (e.g. Internet Explorer 8, Safari, Firefox). This will help us to help you as quickly as possible.

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Glossary

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Glossary

This is a structured glossary of words and terms you may come across in your records that need explanation. These words may mean different things in different contexts, so you should always ask if you need something interpreting. It could be interpreted differently for another person. This is not an exhaustive list – some words will be missing. If something you’re looking for isn’t here, or you need more help with some of these words then call or email brainstrust on 01983 292 405 or hello@brainstrust.org.uk

Term

Definition

1p19q

A chromosome. If the chromosome 1p19q is showing deletion from an oligodendroglioma it means that the tumour is more responsive to chemotherapy.

Adjuvant

Usually used as ‘adjuvant therapies’. These are treatments which are given after a primary treatment, e.g. after removal of a brain tumour.

Alkylating agents

A family of anticancer drugs that interfere with a cell’s DNA to stop it growing.

Anaplastic

When cells divide rapidly and bear little or no resemblance to normal cells in appearance or function.

Anterior

Placed before or in front.

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Anti-angiogenic therapy

Treatment which blocks the formation of new blood vessels around a tumour.

Antibody

An antibody is a protein made by the white blood cells to combat foreign substances.

AntigensÂ

Any substance capable of inducing a specific immune response and of reacting with the products of that response.

Artifact

Fuzziness or distortion in an image caused by manipulation, such as file compression.

Astrocytes

A large, star-shaped cell that forms a supportive network for brain tumour tissue.

Asymptomatic

If you are asymptomatic it means you don’t have any symptoms.

Avastin (Bevacizumab)

A monoclonal antibody that interferes with the blood supply to a brain tumour. It blocks the formation of new blood vessels.

Awake craniotomy

Neurosurgery done with the patient awake for all or part of the surgery.

Axial

Perpendicular to the long axis of the body.

Axial (intra and extra)

Axial is the position as it relates to the central nervous system (CNS). Intra-axial is within the CNS; extra-axial is outside the CNS.

Benign

Usually slow growing, less tendency to invade and often curable if completely removed.

Biopsy

A medical test performed by a surgeon or an interventional radiologist who will take a sample of cells or tissues for examination.

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Biopsy only

A surgical procedure to remove a small piece of tumour for examination to make a diagnosis. This is not performed as part of the surgery to remove the tumour but is a separate procedure.

Blood brain barrier (BBB)

A barrier between brain tissue and circulating blood. It is there to protect the brain and prevents substances from leaving the blood and crossing into the brain tissues.

Brain shift

Deformation and shift of brain tissue during neurosurgery.

Brain stem

The bottom portion of the brain, which connects the cerebrum to the spinal chord.

Burr hole

A hole made in the skull by a special drill with a rounded tip.

Calcification

Calcium deposits in soft brain tissue.

Cannula

A thin tube inserted into a vein or body cavity to administer medicine, drain off fluid, or insert a surgical instrument.

Carmustine (BCNU)

A chemotherapy agent used to treat brain tumours.

Caudal

Postioned underneath or toward the bottom. Sometimes referred to as inferior.Â

Cell

The basic structural and functional unit in people and all living things. Each cell is a small container of chemicals and water wrapped in a membrane.

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Cellular packing density

A large collection of non-overlapping solid objects (particles) is called a packing. They are useful models for the structures of brain tumours. The packing density is defined as the fraction of space covered by the particles. This can be used to model the growth of a brain tumour.

Cerebellum

The second largest structure of the brain, the cerebellum is located just above the neck in the back of the head.

Cerebrum

The largest area of the brain, which occupies the uppermost part of the skull. It consists of two halves (hemispheres).

cGy (centiGrays)

A unit of absorbed radiation dose equal to one hundredth.

Chemosensitive

The susceptibility of tumour cells to the cell-killing effects of anticancer drugs.

Chemotherapy

Drug therapy for cancer.

Chromatin

The protein structures that package DNA and regulate its function, in cancer stem cells.

Chromosome

Part of a cell that contains genetic information.

Clinical presentation

The picture of signs and symptoms, which leads to a diagnosis.

Coarse

Thick, rough appearance. This can be used to describe the abnormal chromatin in tumour nuclei.

Concomitant

Happening at the same time e.g. concomitant temodal with radiotherapy.

Concurrent

Happening at the same time. Radiotherapy and chemotherapy are often referred to as concurrent when they are given at the same time.

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Conformal

Radiotherapy beams are shaped in three dimensions to match the shape of the tumour.

Contrast

1. The degree to which light and dark areas of an image differ in brightness or in optical density. 2. A contrast agent is a substance injected into the body that illuminates certain structures that would otherwise be hard to see on the radiograph (film).

Coronal

The plane created by an imaginary line that divides the body at any level into anterior and posterior portions. Also called the frontal plane.

Corpus Callosum

Nerve fibres that pass through and connect the two halves of cerebral hemispheres.

Cortex

The outer layer of the brain.

Cortical mapping

Cortical maps identify the language, motor, and sensory areas of the cortex and are often used during brain surgery.

Craniocaudal

The direction of entry of the x-ray beam. The beam enters at the cranial end of the part being examined and exits at the caudal end.

Cranium

The top portion of the skull.

CSF (cerebrospinal fluid)

A watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.

CT (computerised tomography)

X rays are aimed at slices of the body (by rotating equipment) and the results are assembled with a computer to give a three-dimensional picture of a structure.

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Cyberknife®

Brand name of a machine used to deliver linear accelerator stereotactic radiosurgery.

Cyst

A cyst in the brain is a sphere filled with fluid, similar to a miniature balloon filled with water. Cysts may contain fluid, blood, minerals, or tissue.

Cystic

A cyst in the brain is a sphere filled with fluid, similar to a miniature balloon filled with water. Cysts may contain fluid, blood, minerals, or tissue. If a tumour has cystic components then it may contain some of these things.

Cytoplasm

The fluid inside a cell but outside the cell’s nucleus. Most chemical reactions in a cell take place in the cytoplasm.

Cytostatic

An agent that stops cell growth or division.

Debulking

A surgical procedure to reduce the size of a brain tumour by removing a portion of it.

Delineation

The outline of the tumour. Also used to delineate target volume of tumour for surgery and radiotherapy.

Demyelination

Loss of the myelin sheath of a nerve.

Dexamethasone

A corticosteroid drug used to treat inflammation.

Diffuse

Widely spread; not confined or localised.

Dis-cohesive

Cells that do not stick to each other

Dose

The total amount of ionizing radiation absorbed by material or tissues, expressed in centigrays.

Dose rate

The quantity of a treatment given over a period of time.

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DTI (diffusion tensor imaging)

A refinement of magnetic resonance imaging (MRI) that allows the doctor to measure the flow of water and track the pathways of white matter in the brain. DTI is able to detect abnormalities in the brain that do not show up on standard MRI scans.

Dura

The outermost of the three meninges.

EEG A record of the tiny electrical impulses produced (electroencephalogram) by the brain’s activity. By measuring characteristic wave patterns, the EEG can help diagnose certain conditions of the brain. Eloquent

Used to describe an area of the brain where, if it is damaged or removed, will result in loss of sensory processing or linguistic ability.

End of life

A phrase used to describe a phase of illness which has become advanced, progressive and incurable.

Endocrine system

The tissues or glands in the body that secrete hormones.

Endothelial

The main type of cell found in the inside lining of blood vessels in the brain.

Enhancement

A substance is used to enhance the structures within the brain during a scan. This reduces the lowest grey values to black and the highest to white.

Eosinophilic

Staining a cell or tissue with the pink dye eosin. This is characteristic of many of the low grade glial tumours.

Ependymal

A cell that forms the lining of the fluid-filled spaces in the brain and spinal cord. It is a type of glial cell.

Excision

A cut.

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External Beam

Radiation therapy that uses a machine to aim x rays at a brain tumour.

Fibrillary

Made up of minute fibres.

First line management

Initial treatment of an illness.

FLAIR (Fluid attenuated inversion recovery)

A pulse sequence used in scanning to null signal from fluids. For example, it can be used in brain imaging to suppress cerebrospinal fluid (CSF).

fMRI (functional MRI)

Functional MRI takes the map obtained with traditional MRI imaging, and adds on additional dimensions, such as measuring regional blood flow over time, or something about the biochemistry of tissue of a brain tumour in a specified location in the brain.

Focal

Limited to a specific area.

Foci

Foci is the plural of focus. It suggests microscopic visualisation of the tumor cells. Under a microscope therefore you might see more than one indication of one or two microscopic foci of possible invasion.

Fractionated

Dividing the total dose of radiation to be given into several smaller, equal portions delivered over a period of days.

Gadolinium

A substance that enhances tumour images using magnetic resonance imaging (MRI).

Gamma Knife速

Brand name of a machine used to deliver stereotactic radiosurgery (SRS), a focal form of radiation therapy.

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GFAP

Short for Glial Fabrillary Acidic Protein. This is a gene. It provides instructions for making GFAP protein, a member of the family that provides support and strength to cells.

Gliadel速

The brand name of a wafer used to deliver chemotherapy.

Glial cells

Any of the cells that hold nerve cells in place and help them work the way they should. The types of glial cells include oligodendrocytes, astrocytes, microglia, and ependymal cells. Also called neuroglia.

Gliolan/5 ALA速

Gliolan is a powder to be made up into a solution to be taken by mouth. Gliolan is used in adult patients with malignant glioma. It helps surgeons to see the tumour more clearly during an operation to remove it from the brain.

Global

Throughout the brain.

Grade

A brain tumour will be given a grade which refers to the way the cells of the tumour look under a microscope. Grade 1 (low grade) refers to tumours that appear less likely to spread and grade IV (high grade) refer to tumours that appear to grow more quickly, or are most malignant. The brain tumour will be graded according to the highest grade of cell that the pathologist sees in the biopsy specimen. So if the tumour has a high percentage of grade II cells, and a small percentage of grade III cells, the tumour will be graded as a grade III.

Gross total resection

Removal of all the tumour.

Halo

An area of perinuclear clearing.

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Heterogeneity

A state of having different characteristics and qualities.

Heterogeneous

A state of having different characteristics and qualities.

High grade

Tumours that appear to grow more quickly, or are most malignant.

Histology

The study of tumour cells under a microscope.

Histopathology

The study of diseased tissues at a minute (microscopic) level.

Homogeneous

Of a uniform, consistent nature.

Hydrocephalus

An abnormal buildup of cerebrospinal fluid (CSF) in the ventricles of the brain.

Hyperchromatic

Abnormally highly coloured or excessively stained.

Hyperostosis

An excessive growth of bone.

Hypothalamus

The region of the brain that forms part of the wall of the third ventricle. It is part of the endocrine system.

IDH-1

Short for Isocitrate Dehydrogenase. IDH is an enzyme, one form of which participates in the citric acid cycle.

Image guidance

A surgical procedure where the surgeon uses tracked surgical instruments to indirectly guide the procedure.

Imaging

The use of technology to create a picture of the brain e.g. MRI scan.

Immunocytochemistry

Technique which uses specific antibodies to identify and stain tissue.

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Immunohistochemistry (IHC)

The process of detecting antigens or biological markers within tumours or brain tissue using antibodies. Immunohistochemistry provides insight about the classification of brain tumours by identifying cellular markers of phenotype and about the tumour’s potential to grow.

Immunoreactive

Reacts with an antibody.

iMRI

Intraoperative magnetic resonance imaging. iMRI enables neurosurgeons to obtain detailed images of the brain during and immediately after surgery, while the patient is still in the operating room.

IMRT (intensity modulated radiation therapy)

Specialised equipment that shapes radiation beams to the size and shape of the tumour.

Increased (high) signal

Hyperintensity signals show up as increased brightness (white) on MRI using different scanning techniques. The nature of brain scans causes tissues with more water to give off brighter signals that appear whiter on the scans.

Inflammation

Redness, warmth, swelling, pain and sometimes loss of function resulting from the body’s response to infection, trauma or a foreign object.

Infra-tentorial

Below the tentorium.

Intracranial

Inside the cranium.

Intracranial haemorrhage

Bleeding within the skull.

Intracranial pressure (ICP)

Pressure inside the cranium.

Intravenous

Into the vein.

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Intrinsic

Originating from, or situated within, an organ or tissue.

Isotope

A form of a chemical element that has a differentfrom-normal atomic mass. Isotopes are used in a number of medical tests because they can produce images of tissues that can be used to detect diseases or conditions.

Ki67

An antigen that detects cells in synthesis phase (the period when the chromosomes are replicated).

Late effects

A health problem that occurs months or years after a disease is diagnosed or after treatment has ended.

Laterality

The side of the body in which symptoms are showing.

Lesion

A brain lesion describes damage or destruction to any part of the brain. It may be due to trauma or any other disease that can cause inflammation, malfunction, or destruction of a brain cells or brain tissue.

Leukopenia

A reduction in the number of white cells in the blood.

LINAC (linear accelerator)

An electrical device that creates ionising radiation in the form of x-rays (photons).

Lobe

One of four sections of the cerebral hemispheres.

Localised

Confined or restricted to an area.

Lomustine (CCNU)

A chemotherapy agent used to treat brain tumours.

Low grade

Tumours that appear less likely to spread.

Macroscopy

Examination with the naked eye.

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Malignant

Cancerous, tending to invade normal tissue or to recur after removal.

Margin

1. A border or edge of the tumour. 2. In surgery, margin refers to an amount that is allowed but that is beyond what is needed. So the margin taken around the tumour.

Markers

Pathologists can test for markers in the tumour tissue. Markers can be genetic, molecular or immunohistochemistry. These tests can: ●● aid the diagnosis of brain tumours which are sometimes hard to diagnose; ●● allow clinicians to work out a prognosis; ●● indicate whether a tumour will respond to a specific type of treatment.

Mask

A mould to keep your head from moving so that you are in the exact same position for each treatment.

MDT

Multidisciplinary team meeting.

Median survival

Average survival time for patients with a certain tumour. 50% will survive longer than the median survival and 50% will survive less.

Meninges

A membrane (one of 3) that envelops the brain and spinal cord).

Metabolism

The chemical and physical processes that happen to maintain the body and produce energy.

Metastasis/metastases

Spread to another part of the body, usually through blood vessels, lymph channels or spinal fluid.

Metastatic brain tumour

A secondary brain tumour formed of cancer cells that began elsewhere in the body e.g. lung, breast, colon, kidney, skin.

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MGMT

Abbreviation for 06-methylguanine –DNA methyltransferase, a gene thought to play a role in DNA repair.

MIB1

A gene that regulates cell death (apoptosis).

Micro-calcification

A tiny abnormal deposit of calcium salts.

Microvascular proliferation

Abnormally thickened blood vessels which tend to be seen in higher grade gliomas. They tend to be leaky and cause contrast enhancement on imaging.

Midline

An imaginary line running along the surface of the brain (front to back), which separates the right and left hemispheres.

Mitoses

The number of cells dividing.

Modality

A method of treatment.

Molecular analysis

The analysis of human DNA, RNA, and chromosomes to establish a diagnosis or prognosis.

MonoclonalÂ

Deriving from a single cell.

Morphology

The form and structure e.g. of a tumour.

Motor

Movement, control of muscles.

MRI (magnetic resonance imaging)

A special radiology technique which takes pictures of internal structures of the body using magnetism, radio waves, and a computer to produce the images of body structures.

Multifocal

Having many focal points. Damage caused by the disease occurs at multiple sites.

Multinucleated

Having more than one nucleus per cell.

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Myelin sheath

The insulating envelope of myelin that surrounds the core of a nerve fibre. It facilitates the transmission of nerve impulses.

Myelosuppression

A decline or absence of blood cell production.

Necrosis

Dead cells in tissue.

Neoplasm

A tumour, either benign or malignant.

Neoplastic

Used to describe abnormal new growth of tissue.

Neuroendoscope

An endoscope for examining and performing various interventions in the central nervous system.

Neuroendoscopy

The use of a neuroendoscope with the aid of a neuronavigation system to examine the central nervous system and perform minimally invasive neurosurgical procedures.

Neurofibrillary matrix

Extracellular background in which the cell sits.

Neuronavigation

Pre-operative MRI information, fed into a computer, that allows the surgeon to view 3D images during surgery.

Neuro-oncology

The branch of medical science dealing with tumours of the nervous system.

Neuropathology

The study of diseases of the nervous system, which includes the brain.

Neurotoxicity

Damage to the nervous system.

Neutropenia

An abnormal decrease in the number of neutrophils, a type of white blood cells.

Nitrosureas

A group of anticancer drugs able to cross the blood brain barrier.

Nuclear

Forming a nucleus.

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Nucleus

The structure in a cell that contains the chromosomes.

Occipital lobe

The lobe of the cerebral hemispheres at the back of the head, just above the neck.

Oedema

Swelling caused by fluid.

Oligodendrocytes

Cells that cover and protect nerve cells in the brain and spinal cord.

Oligodendroglial

Describes a slow-growing tumor that begins in oligodendrocytes.

Optimal

Most desirable or satisfactory.

Oral

By mouth.

Overall survival (OS)

The percentage of people in a study or treatment group who are still alive for a certain period of time after they were diagnosed with or started treatment for a disease.

Palisading

The lining up of cells which gives them the ordered appearance of a fence.

Palliative

Therapy with the goal of relieving symptoms and improving quality of life.

Palliative radiation

Radiation therapy with a goal of relieving symptoms and improving quality of life.

Paraffin

Used in tissue preparation and processing.

Parietal lobe

One of the four lobes of the cerebral hemisphere.

Partial

Not total. Some tumour could not be removed.

Pathology

The branch of medicine that looks at abnormal changes in cells and tissues which signal disease.

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PCV regimen A combination chemotherapy regimen. (procarbazine, lomustine (CCNU), vincristine) Perfusion MR

A special type of MRI that uses an injected dye in order to see blood flow through tissues.

Perinuclear

Situated around a nucleus.

PET (position emission topography)

A scanning device which uses low dose radioactive sugar to measure brain activity.

Pleomorphic

Varying in cell shape.

Posterior

Back.

Prognosis

A forecast as to likely outcome, the chance of recovery.

Progression free survival (PFS)

The length of time during and after the treatment of a disease that a patient lives with the disease but it does not get worse.

Proliferation

An increase in the number of cells as a result of cell growth and division.

Prophylaxis

Preventative.

Proton beam

A treatment that uses high energy beams to treat tumours.

Pseudoprogression

Swelling or contrast enhancement on a scan which suggests tumour progression or recurrence, when it is treatment effect. Pseudoprogression can stabilise without additional treatments and often remains clinically asymptomatic.

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R132H

The most common point mutation of IDH1. This mutation is more commonly seen in lower grade gliomas and the higher grade gliomas that derive from them.

Radiation oncology

The use of radioactive substances and x-rays for the treatment of brain tumours.

Radiosurgery

A special form of radiation therapy that uses a large number of narrow, precisely aimed, high dose beams of ionising radiation.

Radiotherapy

A treatment in which high-energy rays are used to damage cancer cells and stop them from growing and dividing.

Regime

A regulated system of treatment.

Resection

Surgical removal of a brain tumour.

Saggital

The front to rear plane of the body (chest to back).

Segmental

Made up of segments.

Shunt

A drainage system inserted in the brain to drain fluid from a ventricle into a body cavity.

Signal

Brightness of a tissue or structure on MRI.

Single agents

Treatment with a single chemotherapy agent; i.e., treatment with one type of chemotherapy drug, rather than with a combination of different chemotherapy drugs.

Sonowand速

Technology which enables the surgeon to update the map during surgery, scanning the brain with real time 3D ultrasound.

Specimen

A sample of tissue, blood, or urine which is used for analysis and diagnosis.

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SPECT (single photon emission computed tomography)

A scanning technique which uses radioactive materials.

Stereotactic

Precise positioning in a 3D space.

Stereotactic biopsy

A biopsy accomplished with a computer guided needle.

Stereotactic radiosurgery (SRS)

A form of radiation therapy that focuses highpowered x-rays on a small area of the body, better targeting the abnormal area. It is a treatment, not a surgical procedure. Some types of stereotactic radiosurgery require a specially fitted face mask or a frame attached to your scalp. Other names: Gamma knife; Cyberknife; Stereotactic radiotherapy; SRT; Stereotactic body radiotherapy; SBRT; Fractionated stereotactic radiotherapy.

Steroid

Medication used to reduce swelling and inflammation around a brain tumour.

Subcortical

The region of the brain below the cortex.

Sub-total resection

Less than total surgical removal of a tumour.

Supra-tentorial

Above the tentorium.

Suture

A stitch.

Systemic

Affecting or circulating throughout the body.

T1 weighting

MRI image showing structures; cerebrospinal fluid appears black on the image.

T2 weighting

MRI image showing water; oedema and cerebrospinal fluid appear white on the image.

Temozolomide (TMZ)

An anti cancer drug that belongs to the family of drugs called alkylating agents.

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Temporal lobe

One of the four lobes of the cerebral hemisphere.

Tentorium

A flap of the meninges separating the cerebral hemispheres from the brain structures.

Thalamus

The area surrounding the third ventricle.

Thrombocytopenia

A decrease in the normal number of platelets in the blood.

Tissue

A group or layer of cells that work together to perform a specific function.

Toxicity

State of being poisonous.

Trajectory

A chosen course.

Tumour progression

When a tumour recurs, or begins to grow again. The second stage of tumour development.

Vascular

Relating to the blood vessels of the body.

Vascularity

The blood supply of a tumour.

Ventricles

Four connected cavities in the brain through which cerebrospinal fluid flows.

WBRT (whole brain radiotherapy)

A type of external beam radiotherapy which is given to the whole brain over a period of weeks.

WHO classification

The World Health Organization (WHO) classification for the grading of brain tumours.

Summary of data held in brain tumour registry (BTR) records Abrey and Mason (2009) Brain Tumors Fast Facts: Health Press Nordon, Reardon and Wen (2011) Primary Central Nervous System Tumors: pathogenesis and therapy: Humana Press

http://medical-dictionary.thefreedictionary.com Consultant Neuropathologist Consultant Neurosurgeon Brain Tumor: dictionary (2010) American Brain Tumor Association

Young, B. Stewart, W. O’Dowd, G. (2011) Wheater’s Basic Pathology: a text, atlas and review of histopathology: Churchill Livingstone Elsevier

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Notes

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Notes

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Notes

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Registered Charity No. 1114634 Published May 2013 Due for review May 2014 Š brainstrust 2013

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the brain tumour patient portal user handbook  

A guide to help you understand the Brain Tumour Patient Information Portal and the help that is available if you choose to access the tool....

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