If you did not document it, it did not happen: Rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients' medical records

The Adolescent and Young Adult (AYA) community is an underserved population due to unique quality of life and late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients’ medical records at four cancer centers.

Authors: G.P. Quinn, R.G. Block, M.L. Clayman, J. Kelvin, S. Arvey, J.H. Lee, J. Reinecke, I. Sehovic, P.B. Jacobsen, D. Reed, L. Gonzalez, S.T. Vadaparampil, C. Laronga, M.C. Lee MC, J. Pow-Sang, S. Eggly, A. Franklin, B. Shah, W.J. Fulp, B. Hayes-Lattin

Read full article

Comments (0)

Comment *

Add an image

Add a video

Notify me when someone makes a comment

First name *

Last name *

Email *

Please enter your postcode

Address line 1

Address line 2

Town or city

Country

Can we contact you again?

Via email

Via telephone

Via SMS

Via post

Please enter your postcode

Address line 1

Address line 2

Town or city

Country

Allow our trusted third parties to contact you

Agree to the 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 info@tyac.org.uk 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 info@tyac.org.uk 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 info@tyac.org.uk. 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.

Email *

Password * Forgot your password?

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 info@tyac.org.uk

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 info@tyac.org.uk

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 info@tyac.org.uk.

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.

I accept the terms and conditions

Latest

Register Now for NHS England Engagement Events

NHS England and the CRG are keen to engage with stakeholders to share their initial findings and test their thinking for future service proposals ahead of public consultation. There are three engagement events being held across the country. These events are for all stakeholders including clinicians, providers, clinical associations and colleges, patients, families and carers. Please invite your colleagues.
The Brain Tumour Charity 2017 Lab Experience

The Brain Tumour Charity 2017 Lab Experience is now open for 16-17 yr olds interested in a career in cancer research.
The Brain Tumour Charity launches Teenage and Young Adult Service

New service aims to help young people feel less isolated after devastating diagnosis
TYAC BRIGHTLIGHT Conference

We would like to say a big thank you to all those involved in making the TYAC BRIGHTLIGHT Conference last week a success including our professional education group and partners, BRIGHTLIGHT.

First live births less common among cancer survivors

Survivors of childhood and adolescent cancer were less likely as adults to have a first live birth than adults who never had cancer, according to results of a population-based study conducted in Sweden and published in Journal of Clinical Oncology.
Cancer in Adolescents and Young Adults A Narrative Review of the Current Status and a View of the Future

Although cancer remains the most common cause of disease-related death in adolescents and young adults (AYAs) in high-income countries, their overall survival rates continue to increase and now exceed 80% at 5 years in several high-income countries.
A Young Woman Facing Cancer Treatment: Shared Decision-Making in Fertility Preservation

Young patients diagnosed with cancer are at high risk for infertility or for premature ovarian failure. Technological opportunities to preserve fertility are available, and treatment possibilities are still increasing.
Female Sexual Function in Childhood, Adolescent, and Young Adult Cancer Survivors

Female survivors of childhood, adolescent, and young adult cancers are at risk of impaired sexual functioning. Cancer and cancer treatment may alter normal sexual development and predispose women to sexual problems through both physiologic and psychosocial mechanisms.
Fertility Preservation Options for Female Paediatric and Adolescent Oncology Patients

Maintaining the ability to have biologic children has been identified as an important component to post cancer quality of life in survivors. Achieving this in younger cancer patients has become more feasible secondary to improvements in reproductive technology.
Validity of the Brief Symptom Inventory for Identifying Depression and Anxiety in Young Adult Cancer Survivors: Comparison With a Structured Clinical Diagnostic Interview.

The Brief Symptom Inventory-18 (BSI-18) is widely used to assess psychological symptoms in cancer survivors, but the validity of conventional BSI-18 cut-off scores in this population has been questioned. This study assessed the accuracy of the BSI-18 for identifying significant anxiety and depression in young adult cancer survivors (YACS), by comparing it with a "gold standard" diagnostic interview measure.
CLIC Sargent launches new online fertility resource for young cancer patients

Cancer support charity CLIC Sargent has launched new online advice and information for teenagers and young adults concerned about the potential impact of cancer treatment on their fertility, who want to learn more about their options.
TYAC’s National Fertility Awareness Week Voice

National Fertility Awareness Week gave TYAC an opportunity to raise awareness for specialist fertility provisions for teenagers and young adults with cancer for the first time and we were pleased with the brilliant response.
Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis
Children and Young People Survivorship - consolidation of work to March 31st 2014

Join as an individual

When you join TYAC, you become part of a community of fellow professionals working to improve the quality of life and likelihood of survival for young people with cancer.
TYAC BRIGHTLIGHT Conference: Registration Now Open

TYAC is thrilled to announce that registration for this year’s annual conference is now open.
Professional education

We organise conferences for professionals working with young people with cancer to help keep professionals up-to-date with the latest thinking and new developments.
Fertility Best Practice Guidance

Fertility Best Practice Statement published by TYAC's Service Development Group

Guidance for professionals to assist them in having an informed discussion with teenage or young adult patients, and their families if appropriate, about the potential effects of planned treatment on future fertility. The guidance explains the fertility preservation options available to teenagers and young adults and the potential for infertility as a result of treatment for cancer.
Service development

We provide information, advice and support to healthcare professionals who work with young people with cancer or who are developing services for them.
How teenagers continue school after a diagnosis of cancer

A study of the experiences of young people and recommendations for practice.

A small study of twelve participants aged 13-16 years to understand teenagers' experiences. The authors make thirteen recommendations for the development of educational support for young people with cancer, including the role of the school, the young person and their peers, flexibility and timing.
TYAC BRIGHTLIGHT Conference 2017: Call for Poster and Short Presentation Abstracts

We are inviting individuals or groups working in the field of teenagers and young adults (TYA) with cancer to submit abstracts for poster or short oral presentation at the TYAC/Brightlight Conference on 6th and 7th July 2017.
CLIC Sargent launches new online fertility resource for young cancer patients

Cancer support charity CLIC Sargent has launched new online advice and information for teenagers and young adults concerned about the potential impact of cancer treatment on their fertility, who want to learn more about their options.
TYAC Champions

Our Champions are members who encourage information sharing between TYAC and establishments that deliver teenage and young adult cancer care in their local area.
Cancer in young people

Facts and figures about cancer in teenagers and young adults with cancer.