Quality of life evaluation in patients receiving Steroids (the QuESt tool): initial development in children and young people with acute lymphoblastic leukaemia

The powerful cytotoxic and immunomodulatory effects of corticosteroids are an important element of the success that has been achieved in the treatment of acute lymphoblastic leukaemia (ALL). In addition to physical side effects, corticosteroids can adversely influence behaviour, cognitive function and mood leading to significantly impaired quality of life (QoL). A number of tools exist for assessing QoL, but none of these specifically examines changes attributable to steroids.

Authors: M. Adams, M. Robling, J. Grainger, J. Tomlins, A. Johnson, S. Morris, M. Velangi, M. Jenney

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The following information tells you the terms of use on which you may make use of the website of Teenagers and Young Adults with Cancer (TYAC) either as a guest user or as a subscriber to TYAC services. Website terms of use Please read these terms of use carefully before you start to use the site. By using TYAC's website you indicate that you accept these terms of use and that you agree to abide by them. If you do not agree to these terms of use, please refrain from using the website. Information about TYAC www.tyac.org.uk is a website that is operated by Teenagers and Young Adults with Cancer (TYAC). Teenagers and Young Adults with Cancer is a registered charity in England and Wales (No 1167286). Accessing the website Access to the site is on a temporary basis and TYAC reserves the right to withdraw or amend the information it provides on the website without notice. TYAC will not be liable if for any reason the website is unavailable. If you have been issued with or created a user account and password to access a restricted area of the site then you must not allow these to be used by other people or organizations to access the website. You should inform TYAC if you know or suspect that someone else knows your details. In this instance please email [email protected] Disclaimer Any material published on this website does not give a full statement of the law, nor does it reflect changes after the date stated on each document. It is intended for guidance only and is not a substitute for professional advice. No responsibility for loss occasioned as a result of any person acting or refraining from acting on the basis of this material can be accepted by the author or by TYAC. TYAC does not sponsor or indemnify any treatment/ best practice guidance detailed on this website. Information is provided for use at the sole discretion of the social care/allied health care/health care professionals who retain professional responsibility for their actions and therapeutic interventions. Resources detailed have been identified as potentially useful for members. However, TYAC cannot endorse the resources and accepts no responsibility for the accuracy or suitability of their content. Materials and resources TYAC makes Materials and Resources (including but not limited to: best practice statements, publications, videos, webinars, research, conference slides and toolkits) available on www.tyac.org.uk to users under the terms of the Creative Commons Licence, unless otherwise stated. The Creative Commons Licence allows you to use the 'Materials and Resources' throughout the world without payment but for non-commercial purposes only. Whilst every effort is made to ensure that information and documents contained in this site are correct and error free, no responsibility or liability can be accepted by TYAC for any loss or damage incurred as a result of relying on information or downloading files contained within this website. In accordance with standard computer practice, we strongly recommend that you use and regularly update anti-virus software and submit all downloaded documents to a virus checker prior to opening. Intellectual property rights All intellectual property rights of any nature (including copyright) created or provided by TYAC or its employees or associates shall be and remain the property of TYAC and any such materials shall be licensed to you for your internal use only. TYAC's status (and any identified contributors) as authors of material on the site should always be acknowledged. You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way. Reliance on information posted Commentary and other materials posted on our site are not intended to amount to advice on which reliance should be placed. We, therefore, disclaim all liability and responsibility arising from any reliance placed on such materials by any visitor to our site, or by anyone who may be informed of any of its contents. Viruses, hacking and other offences You must not misuse our site by knowingly introducing viruses, trojans, worms, logic bombs or other material which is malicious or technologically harmful. You must not attempt to gain unauthorized access to our site, the server on which our site is stored or any server, computer or database connected to our site. You must not attack our site via a denial-of-service attack or a distributed denial-of-service attack. By breaching this provision, you would commit a criminal offence under the Computer Misuse Act 1990. We will report any such breach to the relevant law enforcement authorities and we will co-operate with those authorities by disclosing your identity to them. In the event of such a breach, your right to use our site will cease immediately. We will not be liable for any loss or damage caused by a distributed denial-of-service attack, viruses or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of our site or to your downloading of any material posted on it, or on any website linked to it. Copyright Images displayed on this website are owned by TYAC or are owned by individuals/organizations we have sought permission from to use. Users of TYAC's website do not have permission to capture and reproduce these images without first seeking prior consent from TYAC. TYAC owns the copyright for its own images and they are part of the TYAC brand. TYAC will retain sole use of these images in the public and private domain until further notice. Links from the site This website may also include links to other websites. These links are provided for your convenience to provide further information. They do not signify that we endorse the website(s). We have no responsibility for the content of the linked website(s) and these sites will have their own privacy policies. We try to ensure all links are as up-to-date as possible. To make users aware that they are leaving our site, we endeavour to ensure that external links open in a new window. Linking to TYAC's site You may link to TYAC's site as long as this is done is a way that is fair and legal and does not damage TYAC's reputation. You must not establish a link in such a way as to suggest that there is any approval or endorsement where none exists. If you wish to make use of any material on the website other than what is listed above then please email [email protected] Privacy Policy This policy covers how Teenagers and Young Adults with Cancer (TYAC) will use personal information that is collected when you use TYAC's website. We are committed to protecting and respecting your privacy. What is collected TYAC's website does not store or capture any personal information when someone visits it and is not registered. The system will log your IP address along with other information provided by your browser. This may include the name and version of the browser you are using, your operating system and any website address that referred you to TYAC's website. This information will only be used for producing anonymous website statistics and will be used to help us with the delivery of the services on the website. However, the system will record personal information if you: Provide information by filling in a form on our site Subscribe, register or apply for services that require personal information to be given Report a fault and give your contact details for us to respond Complete surveys that we use for research purposes Cookies When you visit TYAC website pages, a small text file called a 'cookie', is downloaded onto your computer. This is called a session cookie. This will only remain on your computer until you close your browser. This cookie is not used to identify you personally in any way. We will use this type of cookie to collect aggregated website statistics that allow us to understand how visitors use the site. All of the information collected will be anonymous and only used to help us improve the website and produce reports on usage. A persistent cookie will be downloaded when you first visit the site. These remain in your browsers cookie store between sessions. This type of cookie will allow us to identify repeat visitors to the site. You may opt to view the site without cookies by adjusting your browser's settings. If you do disable cookies some functions of the site may no longer work correctly. For more information on cookies see the All About Cookies website. What we will do with your information Any information that is collected by TYAC from its website will only be used for monitoring purposes unless you have given us consent for your information to be used. Eg. providing us with your email address so we can contact you, if you have registered as a regular site user, if you have registered as a member, if you have registered for an event so that we can get back to you. We may, from time to time, send you relevant information about your membership, TYAC and its work, although you can opt-out of this at any time by emailing [email protected] We will ensure that all personal information supplied is held securely, in accordance with the Data Protection Act 1998. The data controller is Teenagers and Young Adults with Cancer. Our data protection registration number is Z999507X. Access to information The Data Protection Act gives you the right to access information held about you. Your right of access can be exercised in accordance with the Act. Any access request may be subject to a fee of £10 to meet our costs in providing you with details of the information we hold about you. Changes to our privacy policy Any changes we may make to our privacy policy in the future will be posted on this page. Contact us If you have any concerns or queries regarding the website please contact us.

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Terms and conditions

The following information tells you the terms of use on which you may make use of the website of Teenagers and Young Adults with Cancer (TYAC) either as a guest user or as a subscriber to TYAC services.

Website terms of use

Please read these terms of use carefully before you start to use the site. By using TYAC's website you indicate that you accept these terms of use and that you agree to abide by them. If you do not agree to these terms of use, please refrain from using the website.

Information about TYAC

www.tyac.org.uk is a website that is operated by Teenagers and Young Adults with Cancer (TYAC).

Teenagers and Young Adults with Cancer is a registered charity in England and Wales (No 1167286).

Accessing the website

Access to the site is on a temporary basis and TYAC reserves the right to withdraw or amend the information it provides on the website without notice. TYAC will not be liable if for any reason the website is unavailable.

If you have been issued with or created a user account and password to access a restricted area of the site then you must not allow these to be used by other people or organizations to access the website. You should inform TYAC if you know or suspect that someone else knows your details. In this instance please email [email protected]

Disclaimer

Any material published on this website does not give a full statement of the law, nor does it reflect changes after the date stated on each document. It is intended for guidance only and is not a substitute for professional advice. No responsibility for loss occasioned as a result of any person acting or refraining from acting on the basis of this material can be accepted by the author or by TYAC.

TYAC does not sponsor or indemnify any treatment/ best practice guidance detailed on this website. Information is provided for use at the sole discretion of the social care/allied health care/health care professionals who retain professional responsibility for their actions and therapeutic interventions. Resources detailed have been identified as potentially useful for members. However, TYAC cannot endorse the resources and accepts no responsibility for the accuracy or suitability of their content.

Materials and resources

TYAC makes Materials and Resources (including but not limited to: best practice statements, publications, videos, webinars, research, conference slides and toolkits) available on www.tyac.org.uk to users under the terms of the Creative Commons Licence, unless otherwise stated. The Creative Commons Licence allows you to use the 'Materials and Resources' throughout the world without payment but for non-commercial purposes only.

Whilst every effort is made to ensure that information and documents contained in this site are correct and error free, no responsibility or liability can be accepted by TYAC for any loss or damage incurred as a result of relying on information or downloading files contained within this website. In accordance with standard computer practice, we strongly recommend that you use and regularly update anti-virus software and submit all downloaded documents to a virus checker prior to opening.

Intellectual property rights

All intellectual property rights of any nature (including copyright) created or provided by TYAC or its employees or associates shall be and remain the property of TYAC and any such materials shall be licensed to you for your internal use only. TYAC's status (and any identified contributors) as authors of material on the site should always be acknowledged.

You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way.

Reliance on information posted

Commentary and other materials posted on our site are not intended to amount to advice on which reliance should be placed. We, therefore, disclaim all liability and responsibility arising from any reliance placed on such materials by any visitor to our site, or by anyone who may be informed of any of its contents.

Viruses, hacking and other offences

You must not misuse our site by knowingly introducing viruses, trojans, worms, logic bombs or other material which is malicious or technologically harmful. You must not attempt to gain unauthorized access to our site, the server on which our site is stored or any server, computer or database connected to our site. You must not attack our site via a denial-of-service attack or a distributed denial-of-service attack.

By breaching this provision, you would commit a criminal offence under the Computer Misuse Act 1990. We will report any such breach to the relevant law enforcement authorities and we will co-operate with those authorities by disclosing your identity to them. In the event of such a breach, your right to use our site will cease immediately. We will not be liable for any loss or damage caused by a distributed denial-of-service attack, viruses or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of our site or to your downloading of any material posted on it, or on any website linked to it.

Copyright

Images displayed on this website are owned by TYAC or are owned by individuals/organizations we have sought permission from to use. Users of TYAC's website do not have permission to capture and reproduce these images without first seeking prior consent from TYAC.

TYAC owns the copyright for its own images and they are part of the TYAC brand. TYAC will retain sole use of these images in the public and private domain until further notice.

Links from the site

This website may also include links to other websites. These links are provided for your convenience to provide further information. They do not signify that we endorse the website(s). We have no responsibility for the content of the linked website(s) and these sites will have their own privacy policies. We try to ensure all links are as up-to-date as possible.

To make users aware that they are leaving our site, we endeavour to ensure that external links open in a new window.

Linking to TYAC's site

You may link to TYAC's site as long as this is done is a way that is fair and legal and does not damage TYAC's reputation. You must not establish a link in such a way as to suggest that there is any approval or endorsement where none exists.

If you wish to make use of any material on the website other than what is listed above then please email [email protected]

Privacy Policy
This policy covers how Teenagers and Young Adults with Cancer (TYAC) will use personal information that is collected when you use TYAC's website. We are committed to protecting and respecting your privacy.

What is collected
TYAC's website does not store or capture any personal information when someone visits it and is not registered. The system will log your IP address along with other information provided by your browser. This may include the name and version of the browser you are using, your operating system and any website address that referred you to TYAC's website. This information will only be used for producing anonymous website statistics and will be used to help us with the delivery of the services on the website.

However, the system will record personal information if you:

Provide information by filling in a form on our site
Subscribe, register or apply for services that require personal information to be given
Report a fault and give your contact details for us to respond
Complete surveys that we use for research purposes
Cookies

When you visit TYAC website pages, a small text file called a 'cookie', is downloaded onto your computer. This is called a session cookie. This will only remain on your computer until you close your browser. This cookie is not used to identify you personally in any way. We will use this type of cookie to collect aggregated website statistics that allow us to understand how visitors use the site. All of the information collected will be anonymous and only used to help us improve the website and produce reports on usage.

A persistent cookie will be downloaded when you first visit the site. These remain in your browsers cookie store between sessions. This type of cookie will allow us to identify repeat visitors to the site.

You may opt to view the site without cookies by adjusting your browser's settings. If you do disable cookies some functions of the site may no longer work correctly.

For more information on cookies see the All About Cookies website.

What we will do with your information

Any information that is collected by TYAC from its website will only be used for monitoring purposes unless you have given us consent for your information to be used. Eg. providing us with your email address so we can contact you, if you have registered as a regular site user, if you have registered as a member, if you have registered for an event so that we can get back to you. We may, from time to time, send you relevant information about your membership, TYAC and its work, although you can opt-out of this at any time by emailing [email protected]

We will ensure that all personal information supplied is held securely, in accordance with the Data Protection Act 1998. The data controller is Teenagers and Young Adults with Cancer. Our data protection registration number is Z999507X.

Access to information

The Data Protection Act gives you the right to access information held about you. Your right of access can be exercised in accordance with the Act. Any access request may be subject to a fee of £10 to meet our costs in providing you with details of the information we hold about you.

Changes to our privacy policy

Any changes we may make to our privacy policy in the future will be posted on this page.

Contact us

If you have any concerns or queries regarding the website please contact us.

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