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Framework for the care and support for adolescents and young adults with cancer | Cadre sur les soins et le soutien aux adolescents et aux jeunes adultes atteints de cancer (released 16-Oct-2019)

Link containing this letter for circulation within your institution: http://links.partnershipagainstcancer.ca/m/1/17750443/02-b19294-25962202298b4c9ab80b61f12057123e/1/26/14e13af6-a9c5-4623-b34b-91124b1e99d7

Key documents and resources:


Dear Colleagues,

On behalf of the Canadian Partnership Against Cancer, I want to take this opportunity to thank the AYA National Network (AYA NN) for contributing their time, effort and expertise towards the development and release of the Canadian Framework for the Care and Support of Adolescents and Young Adults with Cancer. Our collective vision is that all AYAs with cancer in Canada receive optimal, developmentally appropriate care and comprehensive survivorship support that lead to improved outcomes and high-quality life.

The Framework was developed in collaboration with the AYA NN, as well as input from international and national leaders and experts in cancer and in consultation with AYAs and their families. The Framework is available for download in English and French at the links above.

Over the coming years, we hope that the Framework will inspire future policy direction, investment and action to ensure Canada can meet new challenges in an evolving healthcare landscape, so that every young Canadian with cancer has access to the best practice and support they need to optimize their health, well-being and survival, and that it will facilitate meaningful participation across all aspects of life.

Implementation of the Framework requires leadership across Canada. Please help us share the Framework with as many people as possible, to mobilize our partners to action. Consider how you can champion the actions within the Framework at the individual, service and system level.

We have developed a variety of tools that we will continue to refine and post with the Framework online (available at links above):

  • The Framework at a glance as a one page PDF
  • A PDF document that summaries of the four strategic priorities and the four enabling platforms
  • A brief and editable PPT slide presentation which contains key components of the Framework that can be edited/ customized for use

The actions within the Framework are intentionally broad so that your individual jurisdictions or organizations have flexibility to adapt your approach according to local context and systems capacity. The Framework is intended to complement and enhance national and local efforts, including related regional cancer plans and policies that improve outcomes for AYAs both in terms of the disease itself and the broader psychosocial and mental health and social challenges faced during care and survivorship.

Again, thank you for your leadership.

With gratitude,

Paul Grundy

Chair, Adolescents and Young Adults National Network (AYA NN)

Cancer Research UK has embarked on a major research effort for patients under 25 years

Cancer Research UK, the leading cancer research charity in the United Kingdom, has embarked on a major research effort in the area of “childhood and young peoples” (defined as ages 1 to 24 years).

More details can be obtained here: https://www.cancerresearchuk.org/funding-for-researchers/statement-of-intent-for-childrens-and-young-peoples-cancer-research

Remember to Register! ADOLESCENT & YOUNG ADULT SURVIVORSHIP SYMPOSIUM: A NEW VISION (March 20-21, 2019 in Toronto)

https://uhnevents.regfox.com/aya-survivorship-symposium

Hotel block closes February 17th.

The Adolescent and Young Adult Survivorship Symposium: A New Vision aims to engage local, national and international experts and trainees to build a framework for the delivery of survivorship care for survivors of young adult cancer.

Keynote Speaker:

Dr. Lois Travis, MD, ScD
Director of the Cancer Survivorship Research Program
Melvin and Bren Simon Cancer Centre, Indiana University

Day 1: How Can a Program Can Help Young Adults with Cancer?

Learn about and develop skills in identifying, assessing and intervening on the unique needs of young adults with cancer. Participants will gain an understanding of effective models of care for addressing AYA-specific issues.

Day 2: Surveillance and Screening for Survivors of Adolescent and Young Adult Cancer

Participants will have increased awareness and knowledge of common treatment-related late effects in younger adult cancer survivors and evidence-based interventions for managing them.

See link for registration, agenda, location, contact information and accommodation details.  https://uhnevents.regfox.com/aya-survivorship-symposium

ADOLESCENT & YOUNG ADULT SURVIVORSHIP SYMPOSIUM: A NEW VISION (March 20-21, 2019 in Toronto)

https://uhnevents.regfox.com/aya-survivorship-symposium

The Adolescent and Young Adult Survivorship Symposium: A New Vision aims to engage local, national and international experts and trainees to build a framework for the delivery of survivorship care for survivors of young adult cancer.

Keynote Speaker:

Dr. Lois Travis, MD, ScD
Director of the Cancer Survivorship Research Program
Melvin and Bren Simon Cancer Centre, Indiana University

Day 1: How Can a Program Can Help Young Adults with Cancer?

Learn about and develop skills in identifying, assessing and intervening on the unique needs of young adults with cancer. Participants will gain an understanding of effective models of care for addressing AYA-specific issues.

Day 2: Surveillance and Screening for Survivors of Adolescent and Young Adult Cancer

Participants will have increased awareness and knowledge of common treatment-related late effects in younger adult cancer survivors and evidence-based interventions for managing them.

See link for registration, agenda, location, contact information and accommodation details.  https://uhnevents.regfox.com/aya-survivorship-symposium

PARTICIPATE==> CPAC seeks wide input on new AYA cancer framework – Nov 1 deadline

The Canadian Partnership Against Cancer (CPAC) has developed a survey to gauge opinions on a proposed framework of care for young adult cancer treatment.  If you are interested in giving your feedback, please:

  1. Go to: https://www.youngadultcancer.ca/ayann/
  2. Review the Draft Canadian Framework for AYAs with Cancer, also linked below
  3. Take the survey at https://cpacc.questionpro.ca/t/AB3unt0ZB3upNG
  4. Share the Framework broadly with operation managers, directors, clinicians, patients and family members, and anyone who you feel has a stake in AYA care

 

For more information, including FAQs, infographics and contact info, go to  https://www.youngadultcancer.ca/ayann/

Adolescents and Young Adults with Cancer System Report Available April 2017 (PDF and slide deck)

This report is available for download at: www.systemperformance.ca/reports/

The Canadian Partnership Against Cancer is pleased to share Adolescents and Young Adults with Cancer: A System Performance Report. This is the first time national data on the entire continuum of cancer control in adolescents and young adults have been reported.

 

Building on existing knowledge about cancer in this unique population, key findings include:

  • physical, emotional and practical needs during and after cancer treatment
  • challenges in oncofertility and resource availability to address fertility issues
  • gaps in current research funding and availability of clinical trials
  • more data required to better understand the needs of this group

We would like to acknowledge the Canadian Task Force on Adolescents and Young Adults with Cancer for their important contributions to this report.

Announcing the change-over of the AYA Task Force to the AYA National Network & a big thank you to the people behind the AYA Task Force

The Canadian Task Force on Adolescents and Young Adults with Cancer was formed in 2008, with funding from the Canadian Partnership Against Cancer (CPAC) and the support of C17. A task force is by definition a temporary working group and on March 31, 2017 the CPAC funding for the Task Force was completed. CPAC will continue to support AYA cancer patient and survivors through the new AYA National Network.

The Task Force and its many volunteers accomplished a great deal.  See the last AYA Task Force Newsflash HERE for a summary of some of their accomplishments and a list of the  many individuals behind them. In particular, the founding Chairs of the Task Force are to be applauded as the driving forces behind the Task Force: Ronnie Barr, Paul Rogers, and Brent Schacter. “The legacy of the Task Force will live on not just in the advances made for better care for AYA with cancer, but in the awareness raised and the many collaborations established.”

To better engage the Canadian healthcare system, a pan-Canadian AYA National Network is being established in April 2017. The AYA Network will be chaired by Dr. Paul Grundy, CPAC’s Expert Lead for Pediatric, Adolescent and Young Adult Oncology, and one of the AYA Task Force Chairs.

The goals of the Adolescent and Young Adult National Network are to:

  1. support patients’ and families’ engagement in decision-making processes by contributing to the knowledge, communication and awareness of the information that they need to make informed choices;
  2. identify gaps and key opportunities for improvement in the delivery of AYA programs in Canada;
  3. develop strategies to address these gaps;
  4. develop a set of national outcome performance indicators and benchmarks that build on previous work and accomplishments from provincial, national and internationally recognized approaches.

Remember to check systemperformance.ca on April 21 for the AYA Cancer System Performance Report!

Finding the Goldilocks Zone for Adolescent Young Adult (AYA) Oncology – Dr Sarah McKillop (C17 Education Videoconference, Wednesday Sept 28, 12-1pm MST)

Dr. Sarah McKillop, MD MSc FRCPC

Assistant Professor, Department of Pediatrics, University of Alberta,
Pediatric Hematology/Oncology, Stollery Children’s Hospital

Objectives:

  1. Identify what defines an AYA
  2. Identify ways in which AYAs with cancer are unique – not children/not adults
  3. Recognize challenges in provideing quality care in AYA oncology
  4.   Be aware of recommendations to improve outcomes and quality care for AYAs with cancer

This event will be recorded by AHS Digital Media Services and will be available to view after the presentation date. The link will be sent by e-mail for those who cannot attend on the date of the videoconference.

Telehealth host site: Stollery Children’s Hospital

Telehealth Registration:  Book a room with your institution’s Videoconference Dept. and then follow instructions in the e-mail included with this poster (see e-mail below) in order to register online with Alberta Health Services @ www.vcscheduler.ca/ahs
If you need help please contact our Telehealth team atedm.telehealthscheduling@albertahealthservices.ca

 

To obtain credit certification, please make sure you complete and submit your evaluation form.

Scholarships for Survivors and other items interest in the April Childhood Cancer Canada April Newsletter (including a photo of Sylvain Baruchel and an invite to volunteer at select “The Who” concerts) http://eepurl.com/bYLFkf

The April Childhood Cancer Canada Foundation Newsletter newsletter can be read online at: http://eepurl.com/bYLFkf

CHILDHOOD CANCER CANADA SCHOLARSHIP PROGRAM

Childhood Cancer Canada’s Scholarship Program is open to young adult cancer survivors who are residents, and currently residing in Canada. The Program supports post-secondary academic endeavors and recognizes the personal triumphs of exemplary students who have survived a childhood cancer journey (diagnosed age 18 years or younger).

CCCF offers TWO types of scholarships for childhood cancer survivors:

$1,500 Childhood Cancer Canada Survivor Scholarship:
A one-time award for students in any full-time university, college, or vocational training program. Students may be in any year of their studies provided that they are enrolled in school for the fall term that the scholarships are awarded in.

Note: If you will be attending a part-time program this year please contact Patricia Zareba by email.

$5,000 TEVA Canada Scholarship:
A one-time award that will be granted to a maximum of 10 students entering (or already enrolled in) pharmacy, medicine, or health sciences post-graduate programs of study. Students may be in any year of their studies provided that they are enrolled in school for the fall term that the scholarships are awarded in.

*CEGEP students are not eligible for this award.

Did you know 3% of cancer funding helps kids?  Help CCCF change those numbers!

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C17 Education Rounds April 6: User-Centered Design Approach to the Development and Feasibility Testing of a Smartphone App to Support Real-Time Pain Management for Adolescents with Cancer

Lindsay Jibb, RN, MSc, PhD Candidate, The Hospital for Sick Children

Wednesday April 6, 2016, 12:00 – 13:00 MST

Site registration cut-off date is April 1, 2016.  To obtain credit certification, please make sure you complete and submit your evaluation form.

 

Objectives:

  1. To review the case for novel means to manage pain in the adolescent with cancer population.
  2. To present the user-centered approach used to develop the Pain Squad+ real-time cancer pain self-management app for adolescents with cancer.
  3. To discuss the implementation and preliminary effectiveness results from a longitudinal Pain Squad+ feasibility study with adolescents with cancer.

This event will be recorded by AHS Digital Media Services and will be available to view after the presentation date. The link will be sent by e-mail for those who cannot attend on the date of the videoconference.

Telehealth host site: Stollery Children’s Hospital

Telehealth Registration:  Book a room with your institution’s Videoconference Dept. and then follow instructions in the e-mail included with this poster (see e-mail below) in order to register online with Alberta Health Services @ www.vcscheduler.ca/ahs
If you need help please contact our Telehealth team at edm.telehealthscheduling@albertahealthservices.ca