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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

3CTN Supporting Development of a ALL trial in the AYA Population

Adolescents and Young Adults (AYA) diagnosed with cancer have a unique set of challenges throughout their cancer journey and historically there have been limited formal clinical trials available to this population. To help support research in this important yet underserved segment of the Canadian cancer population, 3CTN is facilitating the development of a new clinical trial for the AYA population. The process began in the spring of 2015 with the release of a request for applications, which asked AYA researchers to submit clinical trial proposals.

Over the past few months, through a formal review and selection process, one project proposal for a trial in Acute Lymphoblastic Leukemia (ALL) was ultimately selected. On November 30 2015, 3CTN and our collaborators* held a workshop in Montreal, Quebec focused on developing this proposed pan-Canadian clinical trial. The workshop brought together principal investigators and site research staff from many Canadian pediatric and adult cancer centres with the common goal of launching a trial to address current knowledge gaps in AYA ALL therapy. Topics covered at the workshop included prioritizing the clinical needs of AYA ALL patients, identification of potential new agents and the status of the relevant diagnostic tests that will be required for a trial. A smaller working group will now focus on designing a draft protocol for a study to open within the next year. Clinical trials targeted to AYA with ALL will ultimately improve the standard of care and health outcomes for this population.

After the workshop, 3CTN provided a satisfaction survey and invited participants to provide feedback on the workshop. Nearly 70 per cent of attendees responded to the survey and indicated that overall, they were pleased with the workshop and that it met its stated goals and objectives.

The final goal of this AYA ALL trial development process will be a clinical trial in which Network centres can participate via the 3CTN Portfolio. Collectively our Network’s involvement may help decrease the knowledge gap in therapy for AYA Canadians diagnosed with ALL.

AYA-specific indicators for cancer system performance measurement — Volunteers Required

The Canadian Task Force on Adolescents and Young Adults (AYA) with Cancer is looking for individuals who would be interested in being part of a team which will carry out the development of AYA cancer system performance measurement capacity.  The work will begin with refinement of a list of indicators, and end with the production of a CPAC Spotlight Report in March 2017 describing the indicator development work and plans for their incorporation within CPAC’s established system performance measurement and reporting.

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Since 2008 the Task Force has been dedicated to addressing the priority challenges in AYA cancer. The Task Force is funded by the Canadian Partnership Against Cancer (CPAC), and is co-chaired by Drs. Paul Rogers, Ronnie Barr, and Brent Schacter.

The Task Force recently received further funding to develop AYA-specific indicators for cancer system performance measurement. AYA-specific metrics are required to address issues unique to AYA with cancer, related to their age and developmental stage. AYA-specific metrics will be an important addition to CPAC’s body of indicators and its system performance reporting. These metrics will identify opportunities to improve quality of care and identify benchmarks to achieve short-term, medium-term and long-term outcome-improvement goals.  AYA-specific system performance information will form the core of the case to be made for action, allocation and re-allocations within the health system.

The AYA Task Force would greatly appreciate any volunteers, or information on other individuals who may be interested in this project. Please do not hesitate to contact the AYA Task Force, or any of the co-chairs.  Contact information for the AYA Task Force can be found at:  www.ayacancercanada.ca

AYA Task Force News Flash

The Summer edition of the AYA Task Force News Flash can be found here.

INVITATION: C17 AGM Reception and Round Table Discussions

All C17 Directors, Co-Chairs, Committee Members, Funders, Parent/Patient representatives and local health professionals are encouraged to attend. Discussions will focus on research, funding and advocacy priorities for C17

One of our key goals is to identify and discuss the priorities and opportunities that C17 is addressing. Some of these include:

  • Adolescent and Young Adult Cancer – the work of our C17 Task Force, the partnership with NCIC CTG to develop an AYA Platform, the 3CTN RFA for AYA clinical trials, and the potential to increase clinical trials enrollment under 3CTN.
  • 3CTN – how do we meet our goals to increase clinical trial enrollment and trigger funding from 3CTN?
  • Research funding – we are exploring new partnered funding for research, including Cancer Research Society, Terry Fox Research Institute, and 3CTN.
  • Funding and Partnerships – our primary funder is Childhood Cancer Canada Foundation, and we have relationships with several other foundations and parent groups. How can we bring them all to the table and meet everyone’s goals?
  • Advocacy – what factors are influencing research and education in Canada today and how can we address them.

We would like to encourage all committees, directors and C17 members to participate in an interactive dialogue during this Wednesday evening session. Our goal is to create some dialogue between funders, parents and health professionals about our priorities.

Please register (no cost) at https://redcap.med.ualberta.ca/surveys/?s=8THWFHPHKE.

Wednesday, June 3

6:00 – 8:30 PM  (A light dinner will be served)

2nd Floor Gallery, PGCRL, the Hospital for Sick Children

Webinar: Access to NCTN AYA Trials, April 22

The CTSU is planning a webinar entitled, “Access to NCTN AYA Trials”, to highlight the need for sites to activate and offer cancer clinical trials to Adolescents and Young Adults (AYA). This webinar is set for Wednesday, April 22nd, 2015 at 4pm – 5pm EST.

NCI’s Dr. Nita Seibel will provide an overview on the NCTN AYA trials available on the CTSU, followed by a detailed summary of the COG-NRG ARST 1321 trial, (Pazopanib Neoadjuvant Trial in Non-Rhabdomyosarcoma Soft Tissue Sarcomas (PAZNTIS): A Phase II/III Randomized Trial of Preoperative Chemoradiation or Preoperative Radiation Plus or Minus Pazopanib), given by Study Co-Chair, Dr. Aaron Weiss from COG.

The agenda also will include:

  • Suggestions from a few NCTN sites on how they’ve successfully opened AYA trials for both pediatric and adult patients.
  • Information provided by NCI’s CIRB on their review processes for these trials and activation at sites treating pediatric or older adult patients.
  • A brief recap by CTSU on site crediting for AYA trials.

The webinar will end with a Q&A session for you to ask questions from any of the webinar presenters about the trial and any issues regarding activating and accruing to AYA trials.

This webinar kicks off a new series of webinars by the CTSU. The goal of these webinars is to address key concerns that affect accrual to NCI-supported trials, and raise of awareness of trials among NCTN sites. The series is available to all sites and individuals interested in attending.

To attend the webinar on the NCTN AYA trials, simply go to the link below, and click register.

https://ctwestat.webex.com/ctwestat/k2/j.php?MTID=ta78f8b346ffcf4e0123f5892eac98969