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Looking for articles and other resources on a variety of AYA Cancer topics?
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Care4Kids
Colorectal Cancer Resource & Action Network
The Colorectal Cancer Resource & Action Network (CCRAN) is the most trusted colorectal cancer patient and caregiver network in Canada. We champion the health and the well-being of Canadians touched by colorectal cancer and others at risk of developing the disease by providing a “SEA” of services: Support, Education and Advocacy.
Colorectal Cancer Canada
Colorectal Cancer Canada is the nation’s non-profit colorectal cancer patient organization. We are dedicated to colorectal cancer awareness and education, supporting patients and caregivers, and advocating on their behalf. Our goal is to reduce the incidence and mortality of colorectal cancer in Canada and to improve the quality of life for patients, their families and caregivers.
The Leukemia & Lymphoma Society of Canada
LLS won’t stop until there is a cure for leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms and are able to improve the quality of life of people affected by blood cancers and their families by funding life-enhancing research and providing educational resources, services and support.
Canadian Cancer Society
The Canadian Cancer Society works tirelessly to save and improve lives. Thanks to our donors and volunteers, we’re able to fund groundbreaking cancer research into all types of cancer, offer support services to help people better manage life with cancer, shape healthy public policies to prevent cancer and support those living with the disease, and offer trusted cancer information for all Canadians.
Cancer and Work
The Cancer and Work website was designed to address the unique needs of cancer survivors with returning, remaining, changing work or looking for work after a diagnosis of cancer. The website provides newly created information, resources, and interactive tools for cancer survivors, healthcare providers, employers, and highlights helpful information from across the globe.
The delivery of palliative and end-of-life care to adolescents and young adults living with cancer: a scoping review protocol
This review will provide an overview of the evidence on the delivery of palliative and end-of-life care to adolescents and young adults living with cancer, by identifying knowledge gaps and discussing the key characteristics and types of evidence in this field.
Peer Support Needs and Preferences for Digital Peer Navigation among Adolescent and Young Adults with Cancer: A Canadian Cross-Sectional Survey
Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA.
AYA Cancer Priority Setting Partnership
Each year, nearly 9,200 adolescents and young adults (AYAs) aged 15-39 are diagnosed with cancer in Canada. AYAs with cancer have unique medical and psychosocial needs that often go unmet. The AYA Priority Setting Partnership (PSP) is bringing together AYA patients, caregivers, and clinicians to identify the key areas of research that are needed to improve care for AYAs with cancer in Canada. The PSP will result in a list of Top 10 Research Priorities that will guide a new research agenda. We are following the James Lind Alliance Method for this PSP.
Creator: University of Calgary
Clinical Delays and Comparative Outcomes in Younger and Older Adults with Colorectal Cancer: A Systematic Review
Outcome disparities between adults <50 with colorectal cancer (CRC) and older adults may be explained by clinical delays. This study synthesized the literature comparing delays and outcomes between younger and older adults with CRC. Databases were searched until December 2021. We included studies published after 1990 reporting delay in adults <50 that made comparisons to older adults. Comparisons were described narratively and stage between age groups was meta-analyzed. 39 studies were included representing 185,710 younger CRC patients and 1,422,062 older patients. Sixteen delay intervals were compared. Fourteen studies (36%) found significantly longer delays among younger adults, and nine (23%) found shorter delays among younger patients. Twelve studies compared time from symptom onset to diagnosis (N younger = 1538). Five showed significantly longer delays for younger adults. Adults <50 years also had higher odds of advanced stage (16 studies, pooled OR for Stage III/IV 1.76, 95% CI 1.52–2.03). Ten studies compared time from diagnosis to treatment (N younger = 171,726) with 4 showing significantly shorter delays for younger adults. All studies showing longer delays for younger adults examined pre-diagnostic intervals. Three studies compared the impact of delay on younger versus older adult. One showed longer delays were associated with advanced stage and worse survival in younger but not older adults. Longer delays among younger adults with CRC occur in pre-diagnostic intervals.
The Effect of Specialized Palliative Care on End-of-Life Care Intensity in AYAs with Cancer
Many AYAs with cancer continue to receive HI-EOL care; however, in this cohort, there was a clear benefit to Specialized Palliative Care (SPC) involvement in reducing care intensity. AYAs least likely to receive SPC included those with hematologic malignancies, males, and rural AYAs. Increasing SPC access has the potential to improve EOL care.
Prevalence, severity, and predictors of symptom burden among adolescents and young adults with cancer
Symptom burden in adolescents and young adults (AYA) with cancer is poorly characterized but impacts quality of life. AYA with cancer experience substantial symptom burden. Risk of death increased with symptom severity. Interventions targeting cancer fatigue and anxiety, and targeting AYA in lower-income neighborhoods, are likely to improve quality of life in this population.
The Development and Impact of AYA Can—Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada
Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to “AYA Can—Canadian Cancer Advocacy”), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a “patient ambassador program,” and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.
Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned
The Adolescent and Young Adult (AYA) Program at CancerCare Manitoba (CCMB) has experienced tremendous growth since its inception. This report provides an overview of how the AYA program at CCMB was established and the crucial factors that led to its early accomplishments and continued expansion. These factors included actions and decisions made at the individual and organizational level that helped lay a strong foundation for the program’s sustained success. We hope that some of these lessons learned can be adapted and implemented by other oncology agencies to improve the care outcomes and experiences of AYAs living with cancer.
Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study
TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 and 2024 with a group of patient advisors, the website includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these Manitoba activities. A link allows visitors to register to be contacted about activities that match their demographics, cancer history, and activity preferences. After TheKeep.Ca was constructed, this protocol was developed to establish TheKeep.Ca as a platform for scientific research focused on optimally engaging those experiencing cancer.
Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership
Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.
“We can do better”: preferred practices and areas for improvement while working with patient advisors in professional organization committees
Background:
As the best practices for working with patient advisors in organizational committees are still under development, we sought to identify our own experience as the Canadian Association of Psychosocial Oncology—Advocacy Committee.
Methods:
Committee communications including meeting minutes, email correspondences, and transcript of a webinar delivered by the authors were reviewed to identify the key patient advisor experiences and preferences.
Results:
We identified practices in good standing and areas to improve. The main areas to improve were related to circumstances or preferences of patient advisors; financial compensation; access and health issues; and the nature of partnerships. The preferred and recommended practices included providing safe spaces; empowering, respecting, and valuing patient advisors; providing resources, guidelines, and remuneration to patient advisors; increasing advisor diversity through more extensive recruitment; and removing the barriers.
Conclusions:
There is a need for improving patient advisors’ experiences for equity and optimum committee work.
BioCanRx Summit for Cancer Immunotherapy 2022 Proceedings
From 19 to 21 November 2022, BioCanRx held its first post-pandemic in-person Summit for Cancer Immunotherapy in Montreal, Canada. The meeting was well attended by patients, trainees, researchers, clinicians, and industry professionals, who came together to discuss the current state and future of biotherapeutics for cancer in Canada and beyond. Three plenaries, three keynote speakers, a lively debate, and panel discussions, together with poster sessions and a social event, made the event memorable and productive. The current state of cellular therapies, cellular engineering, clinical trials, and the role of the cancer microbiome were discussed in plenary session, and the patient voice was welcomed and present throughout the meeting, in large part due to the Learning Institute, a BioCanRx initiative to include patient partners in research. In this meeting review, we highlight the platform presentations, keynote speakers, debate combatants, panellists, and the patient perspective on the annual meeting.
The human crisis in cancer: a Lancet Oncology Commission
Amid unprecedented scientific progress in oncology, a growing body of evidence reveals a parallel and profound crisis in the human experience of cancer care. Despite overall survival outcomes improving, the systems designed to deliver care increasingly fall short in addressing the emotional, relational, and existential dimensions of cancer. Although examples of compassionate and attentive care can be found in every setting, patients and families across global contexts continue to report being unheard, unsupported, and, at times, actively harmed by care structures that prioritise technical precision over human presence. This Lancet Oncology Commission proposes that the human crisis of cancer is not defined by pathology, mortality, or cause, but by the erosion of meaning, connection, and compassion in the experience of cancer. This crisis is shaped by what is present and what is absent: the presence of fragmented, costly, and impersonal systems and the absence of human connection, psychological safety, and relational care. It is a crisis that spans delivery, mental health, palliative care, research, and education—one that is not peripheral to oncology’s progress but central to its failures. The impacts of this crisis are felt most acutely by those already made vulnerable by inequity, discrimination, and economic precarity, but it is a system-level failure that ripples across every context, from the most resource-rich to the most resource-constrained settings. Addressing this crisis will require more than good intentions; it will demand confronting the structural incentives and ideologies that have devalued the relational foundations of cancer care. This Commission identifies a growing imbalance between technological innovation and the human dimensions of cancer care. As the field has increasingly prioritised biopharmaceutical development, genomic precision, and market-driven efficiencies, it has often neglected core practices that uphold dignity, alleviate suffering, and build trust.
Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study
Background: Patient engagement in research is the meaningful and active involvement of patient and caregiver partners (ie, patients and their family or friends) in research priority-setting, conduct, and governance. With the proper support, patient and caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.
Objective: This participatory qualitative study aimed to answer the question: What are the facilitators and barriers to patient engagement experienced by patient and caregiver partners in a Canadian research context?
Methods: Participants were N=13 patient and caregiver partners (median age 62 y, IQR 58-69 y; 11/13, 85% women; 13/13, 100% White) from 4 provinces who completed 60‐90-minute semistructured videoconferencing interviews. The interviews were transcribed verbatim. A researcher and a patient partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using participatory theme elicitation alongside 7 patient and caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives.
Results: We generated four themes depicting factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations; (2) demonstrating the value and impact of engagement; (3) psychological safety; and (4) community outreach, training, and education. We then discuss how barriers to enacting these 4 factors can be mitigated and provide a practical checklist of considerations for both researchers and patient and caregiver partners for engaging together throughout the research cycle.
Conclusions: Research teams conducting patient and caregiver engagement activities should draw from our findings to mitigate barriers and facilitate meaningful engagement experiences.
Job-protected medical leave lets workers return to work after serious illness
Workers with a serious illness or injury will have improved job protection under a proposed amendment to the Employment Standards Act.
Following the changes, working people will be able to take as many as 27 weeks of unpaid, job-protected leave within a 12-month period to undergo medical treatment and recovery.
The amendment will bring British Columbia’s protections up to the standard that is already in place in other jurisdictions in Canada, and in alignment with financial supports provided by the federal Employment Insurance Sickness Benefits program.
Podcasting and Blogging as Tools to Engage with the Public on the Topic of Cancer: Experience and Perspectives of the Public Interest Group on Cancer Research
We (Public Interest Group on Cancer Research) started a podcast and guest blog series on cancer in 2024. Our objective in this Commentary is to describe our experience with this series, insights gained, adjustments made to our approach, and our recommendations for future series. Our group identified and invited guests to contribute a blog or podcast episode on cancer, lived experience of cancer, cancer care and research, or advocacy. The podcast episodes were recorded using the WebEx platform (version 45.9.0.33069) and edited using the Kdenlive software (version 23.08.4). The blogs and podcasts were edited, finalized, and posted online for public access. In this manuscript, we utilized descriptive statistics to define and summarize information about the podcast episodes, guest blogs, and categorical responses to guest feedback survey questions, while we presented the responses to open-ended survey questions as quotes and summaries. As a result, during the period of January 2024–July 2025, we aired 28 podcast episodes and 13 guest blogs involving 36 guests. Guests included people from various backgrounds (such as people with lived experience, advocates, scientists, and healthcare providers) and members of equity-deserving communities (such as women, Indigenous and 2SLGBTQIA+ communities). We contemplated and learned as we proceeded with this project and implemented changes to address the issues that arose. In most cases the guests had positive experiences; however, in rare cases, university practices or federal policies prevented guest compensation, creating an unusual barrier. In conclusion, podcasting and blogging are practical public engagement instruments that provide space for sharing messages and knowledge to communicate with members of the public. Systematic barriers, such as policies that hamper guest compensation, need to be fixed for equitable participation, compensation, and engagement. As there is an increased interest in public engagement and knowledge mobilization activities, our learnings shared in this commentary may help other groups initiate or improve their public engagement practices.
Income and employment outcomes in early adulthood among survivors of childhood cancer: a population-based longitudinal matched cohort study in Canada
Purpose: To examine labor force participation and employment income during early adulthood among childhood cancer survivors and matched cancer-free individuals in Canada.
Methods: Children aged 0–14 diagnosed with cancer from 2000 to 2017 in Canada were identified from the Canadian Cancer Registry and matched to cancer-free individuals by birth year, sex, and region of Canada at age 18. Matched cohorts were generated for all cancers combined, by cancer type (hematologic/central nervous system [CNS]/solid), and age at cancer diagnosis (0–4, 5–9, 10–14 years). Using linked national tax records, we examined labor force participation (declared employment income of > $0) and employment income (2017 CAD) annually during adulthood (≥ 18 years) until 2017. Absolute and relative differences in outcomes between groups were investigated using generalized estimating equations.
Results: Overall, 3635 childhood cancer survivors and 1,032,090 cancer-free individuals were included (median age by maximum follow-up: 22 years). During follow-up, survivors were 5% less likely to be employed (risk ratio [RR], 0.95; 95% CI 0.94, 0.96) and earned 6% lower income annually (ratio of income, 0.94; 95% CI 0.89, 0.98), after adjusting for age and period effects. The largest effect sizes were observed among CNS survivors (RR for, 0.89; 95% CI 0.87, 0.92; ratio of income, 0.77; 95% CI 0.67, 0.89).
Conclusions: In this pan-Canadian longitudinal matched cohort study, we observed differences in socioeconomic outcomes between adult-aged childhood cancer survivors and cancer-free individuals. Given the cohort’s young age, additional studies incorporating education data are warranted.
Implications for Cancer Survivors: Childhood cancer can impact a survivor’s career path. This study provides insight into the financial trajectory of survivors in Canada.
Income After Cancer Across Gender and Age Among Canadian Adolescents and Young Adults
Projected estimates of cancer in Canada in 2024
Background: Cancer surveillance data are essential to help understand where gaps exist and progress is being made in cancer control. We sought to summarize the expected impact of cancer in Canada in 2024, with projections of new cancer cases and deaths from cancer by sex and province or territory for all ages combined.
Methods: We obtained data on new cancer cases (i.e., incidence, 1984–2019) and deaths from cancer (i.e., mortality, 1984–2020) from the Canadian Cancer Registry and Canadian Vital Statistics Death Database, respectively. We projected cancer incidence and mortality counts and rates to 2024 for 23 types of cancer, overall, by sex, and by province or territory. We calculated age-standardized rates using data from the 2011 Canadian standard population.
Results: In 2024, the number of new cancer cases and deaths from cancer are expected to reach 247 100 and 88 100, respectively. The age-standardized incidence rate (ASIR) and mortality rate (ASMR) are projected to decrease slightly from previous years for both males and females, with higher rates among males (ASIR 562.2 per 100 000 and ASMR 209.6 per 100 000 among males; ASIR 495.9 per 100 000 and ASMR 152.8 per 100 000 among females). The ASIRs and ASMRs of several common cancers are projected to continue to decrease (i.e., lung, colorectal, and prostate cancer), while those of several others are projected to increase (i.e., liver and intrahepatic bile duct cancer, kidney cancer, melanoma, and non-Hodgkin lymphoma).
Interpretation: Although the overall incidence of cancer and associated mortality are declining, new cases and deaths in Canada are expected to increase in 2024, largely because of the growing and aging population. Efforts in prevention, screening, and treatment have reduced the impact of some cancers, but these short-term projections highlight the potential effect of cancer on people and health care systems in Canada.
Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors
Adolescents and young adults (AYA) with cancer and survivors of cancer in childhood, adolescence, and young adulthood are a constituency facing disparities of care affecting quality of life and other outcomes in many parts of the world. In Canada, this situation occurs in a nation with population-based cancer control programs and a government-funded healthcare system. The Canadian Task Force on Adolescents and Young Adults with Cancer was established in 2008 with a mission to ensure that AYA-aged Canadians with cancer and AYA survivors of cancer have prompt, equitable access to the best care, and to establish and support research to identify how their health outcomes and quality of life can be optimized. Following a survey of existing services, and in consultation with survivors, healthcare professionals, and policy makers, the Task Force identified principles of care, priority issues for research and the establishment of outcome metrics, and strategies for implementing change that are designed to improve the outcomes and quality of life of this specific cohort of patients and survivors with unique developmental needs. The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, and will provide economic and other societal benefits.
Active therapy and models of care for adolescents and young adults with cancer
The reduction in the cancer mortality rate in adolescents and young adults (AYA) with cancer has lagged behind the reduction noted in children and older adults. Studies investigating reasons for this are limited but causes appear to be multifactorial. Host factors such as developmental stage, compliance, and tolerance to therapy; provider factors such as lack of awareness of cancer in AYA and referral patterns; differences in disease biology and treatment strategies; low accrual onto clinical trials; and lack of psychosocial support and education programs for AYA all likely play a role. Recommendations for change from a recent international workshop include education of physicians and patients concerning AYA cancer, improved cooperation between pediatric and adult centers, age-appropriate psychosocial support services, programs to help AYA with issues relevant to them, dedicated AYA hospital space, improved accrual to clinical trials, the use of technology to educate patients and enhance communication between patients and the health care team, and ensuring that resident and fellowship training programs provide adequate education in AYA oncology. The longer term goal is to develop AYA oncology into a distinct subspecialist discipline within oncology. The ideal model of care would incorporate medical care, psychosocial support services, and a physical environment that are age-appropriate. When this is not feasible, the development of “virtual units” connecting patients to the health care team or a combination of physical and virtual models are alternative options. The assessment of outcome measures is necessary to determine whether the interventions implemented result in improved survival and better quality of life, and are cost-effective.
A Process for Change in the Care of Adolescents and Young Adults with Cancer in Canada. “Moving to Action”: The Second Canadian International Workshop. International Perspectives on AYAO, Part 1
The Canadian National Adolescent and Young Adult Cancer Task Force (NTF) held its second international workshop in Toronto during March 2012. The workshop’s theme, “Moving to Action,” focused on implementing the NTF’s recommendations, published previously in the Journal of Adolescent and Young Adult Oncology. Here we provide a review of the NTF’s process of engagement and actions in order to advocate for and implement a change process in the care of AYA patients in Canada. The highlights of the second international workshop and components of the resulting “Framework for Action” are reported.
Commentary
Evolution of adolescent and young adult oncology in Canada
In 2008, the Canadian Task Force on Adolescents and Young Adults with Cancer (tf) was formed with funding from the Canadian Partnership Against Cancer, together with the support of C17, the consortium of Canadian pediatric cancer centres. The goal of developing an aya-specific cancer control strategy was to improve all outcomes in the aya cancer population. The tf was headquartered at McMaster University and had a small administrative secretariat under the direction of three co-chairs. All participated in teleconferences every two weeks, thus facilitating nimble advances and sustained productivity. Ultimately the tf included more than 60 individuals providing diverse professional and regional representation, as well as representation from survivors and family members. Working groups were formed to address key issues identified during two international workshops held by the tf. During its existence from 2008 to 2017, the tf provided guidance for best care on many fronts and drew attention to deficiencies in aya cancer care and cancer control in Canada that required process and structural improvements.
Understanding the Symptoms and Concerns of Adolescents and Young Adults with Cancer in Alberta: A Comparative Cohort Study Using Patient-Reported Outcomes
Development of System Performance Indicators for Adolescent and Young Adult Cancer Care and Control in Canada
Objectives: To develop an expert-group, consensus-based list of system performance indicators to be used for monitoring, evaluating, and benchmarking progress for cancer care and control in adolescents and young adults (AYAs) in Canada.
Methods: A national multidisciplinary panel of AYA oncology experts was convened; they prepared a literature review and undertook a brainstorming exercise to create a comprehensive list of indicators based on a previously defined framework for AYA cancer care and control in Canada. A modified Delphi process was then undertaken to cull the list based on 3 quick screen criteria. Three rounds of ranking were required. The fourth stage employed a face-to-face meeting, and the final stage utilized a survey to rank the indicators on the basis of importance and feasibility.
Results: Nineteen participants contributed to the 5-stage process. From an initial list of 114 indicators, 14 were ultimately endorsed, representing 5 themes: active care, survivorship, psychosocial issues, palliative care, and research. The 5 highest ranked indicators were assessed as very to moderately feasible, with only a single indicator (clinical trial enrollment) in the top 5 assigned a least feasible ranking.
Conclusion: The 14 indicators provide a starting point for the development of a standard set of metrics for AYA cancer care and control in Canada and have potential for international utility.
Adolescent and young adult (AYA) oncology — An emerging discipline
Recognition of the distinctive challenges in providing care to adolescents and young adults (AYA) with cancer has grown over the past 30 years in numerous countries, stimulated in particular by groups of advocates who have in turn raised awareness and philanthropic funding while harnessing support from the cancer care community and agencies of federal governments.
Adolescent and young adult cancer patients
Recent publications highlight unique needs of young oncology patients and survivors.
Every year 2,000 Canadians aged 15 to 29 are diagnosed with cancer.1 In response to the unique needs of these young Canadians, the Canadian Task Force on Adolescents and Young Adults with Cancer (AYA Task Force) is pioneering work to investigate and increase awareness of treatment and survivorship issues.
Life after cancer: Transforming the post-treatment experience
Shining a light on adolescents and young adults.
In 2023, an estimated 9,000 people in Canada aged 15 to 39 were diagnosed with cancer.1 As survival rates continue to climb, more and more adolescents and young adults (AYAs) will live several decades beyond diagnosis and treatment. That’s good news. But as AYAs with cancer get older, they also have unique needs that are often unmet. Only by addressing those needs can they lead long, fulfilling lives.
Primary care tools supporting adolescent and young adult cancer survivors
Primary care providers may not see adolescent and young adult (AYA) cancer survivors often, but when they do, these two just-in-time tools have been developed to help providers connect their AYA patients to further resources and support.
Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned
The Adolescent and Young Adult (AYA) Program at CancerCare Manitoba (CCMB) has experienced tremendous growth since its inception. This report provides an overview of how the AYA program at CCMB was established and the crucial factors that led to its early accomplishments and continued expansion. These factors included actions and decisions made at the individual and organizational level that helped lay a strong foundation for the program’s sustained success. We hope that some of these lessons learned can be adapted and implemented by other oncology agencies to improve the care outcomes and experiences of AYAs living with cancer.
Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors
Adolescents and young adults (AYA) with cancer and survivors of cancer in childhood, adolescence, and young adulthood are a constituency facing disparities of care affecting quality of life and other outcomes in many parts of the world. In Canada, this situation occurs in a nation with population-based cancer control programs and a government-funded healthcare system. The Canadian Task Force on Adolescents and Young Adults with Cancer was established in 2008 with a mission to ensure that AYA-aged Canadians with cancer and AYA survivors of cancer have prompt, equitable access to the best care, and to establish and support research to identify how their health outcomes and quality of life can be optimized. Following a survey of existing services, and in consultation with survivors, healthcare professionals, and policy makers, the Task Force identified principles of care, priority issues for research and the establishment of outcome metrics, and strategies for implementing change that are designed to improve the outcomes and quality of life of this specific cohort of patients and survivors with unique developmental needs. The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, and will provide economic and other societal benefits.
‘We cannot cheat death’: Young Ontarians with cancer far more likely to receive intense end-of-life care, study finds
Adolescents and young Ontarians with cancer are more likely to receive intense end-of-life care than their older peers, even in situations where it is unlikely to help, a new study suggests — a trend that may be prolonging the suffering of some young patients, according to the paper’s lead author.
Open Access Palliative care involvement and intensity of end-of-life care among adolescents and young adults with cancer: a population-based study
Background: Adolescents and young adults (AYAs) with cancer often experience high-intensity end-of-life care and low utilization of palliative care. To explore this further, we evaluated the frequency of palliative care involvement and its association with end-of-life care intensity among AYAs with cancer in Ontario, Canada.
Methods: We conducted a retrospective cohort study using health administrative databases in Ontario, Canada, from Jan. 1, 2018, to Dec. 31, 2022. The cohort included AYA cancer decedents, aged 15 to 39 years. We categorized palliative care involvement into lifetime involvement and involvement in the last 90 days of life. We classified palliative care according to whether it was provided by a generalist or specialist physician using previously validated criteria. The primary outcome was the prevalence of palliative care involvement. Secondary outcomes included various measures of the intensity of end-of-life care; we analyzed whether palliative care involvement was associated with intensity of end-of-life care.
Results: Among 1981 AYAs, 76% had palliative care involvement in the last 90 days of life, of which 89% were from specialist palliative care physicians. Specialist palliative care involvement was associated with higher rates of hospital admission (58% v. 57% v. 47%, p = 0.0004), but lower use of mechanical ventilation (12% v. 36% v. 33%, p < 0.0001), hospital deaths (42% v. 64% v. 56%, p < 0.0001), and intensive care unit deaths (12% v. 38% v. 38%, p < 0.0001) compared with generalist and no palliative care, respectively.
Interpretation: Both palliative care and intensive care are increasingly used among AYAs with cancer at the end of life in Ontario, Canada. Increasing the availability of specialized AYA-focused palliative care may help to optimize end-of-life care in this population.
Unheard. Unserved: Misdiagnosed for years, terminal cancer patient says more access could save lives
A Nova Scotia woman with a rare form of cancer is hoping her terminal diagnosis can make change. She says if wait times for the gynecological care she needed weren’t so long, her situation may be different.
Why Are So Many Younger Canadians Getting Cancer?
The world is facing an epidemic of cancer in people under 50. Our health-care system is trying to catch up.
The need to better understand cancer in AYAs is more critical than ever, and health-care systems—including ours—have to evolve accordingly.
Transition needs and preferences identified during peer visits to three European best-practice CAYA cancer Long-Term Follow-Up care centres: An EU-CAYAS-NET project
Patient Charts: How to Carefully Manage Patient Access to Health Information
Advocate Angus Pratt explores the pros and cons of patient access to electronic health records and discusses how the emergence of artificial intelligence—with human oversight—could offer a way to navigate this complex issue.
Palliative Manitoba
Youth Bereavement Support
Palliative Manitoba understands that every child feels the effect of a death of a loved one in different ways, sometimes responding unexpectedly.
We offer grief support services available to young individuals. Kids Grieve Too and Teens Grieve Too help children and youth address grief that accompanies a death, and provide them with tools to address feelings and emotions directly.
Palliative Manitoba understands the importance of using real language when speaking to children about grief. In these programs, participants take part in different activities, while parents and guardians are offered support in another group setting.
CU Therapy
Resources for people who have undergone or will undergo cancer treatment.
Spreading Your Wings : What is the transition from pediatric to adult care after cancer?/Prendre Envol : Qu’est-ce que la transition du milieu pédiatrique au milieu adulte?
In this video, the first in a series of 4, young survivors share in their own words what this key stage means. Between new challenges, changes, and hopes, discover why this transition is much more than just moving from one service to another. #TakeFlight #CareTransition #YouthOncology #TrueStories
Dans cette vidéo, la première d’une série de 4, des jeunes survivants expliquent, avec leurs mots, ce que signifie cette étape clé. Entre nouveaux défis, changements et espoirs, découvrez pourquoi cette transition est bien plus qu’un simple passage d’un service à un autre. #PrendreEnvol #TransitionDeSoin #OncoJeunesse #HistoiresVraies
Spreading Your Wings : What are the differences between pediatric and adult care?/Prendre Envol : Quelles sont les différences entre le milieu pédiatrique et le milieu adulte?
In this video, the second in a series of 4, young survivors share the differences they experienced during their transition from pediatric to adult care, along with their advice for navigating these changes more smoothly. #TakeFlight #CareTransition #YouthOncology #CancerSurvivors #YoungCancerPatients #LifeJourney
Dans cette vidéo, la deuxième d’une série de 4, de jeunes survivants partagent les différences qu’ils ont expérimentées lors de leur transition du milieu pédiatrique au milieu adulte, ainsi que leurs conseils pour mieux vivre ces changements. #PrendreEnvol #TransitionDeSoin #OncoJeunesse #SurvivantsDuCancer #CancerJeunes #parcoursdevie
Spreading Your Wings : Why is it important to know your health history?/ CA Skip navigation Search Create Avatar image Prendre Envol : Pourquoi est-il important de connaître son historique de santé?
In this video, the third in a series of 4, young survivors explain why knowing your medical history is essential during the transition from pediatric to adult care. They share their experiences and offer advice for managing your health and anticipating necessary care. #TakeFlight #CareTransition #YouthOncology #CancerSurvivors #YoungCancerPatients #LifeJourney
Dans cette vidéo, la troisième d’une série de 4, de jeunes survivants expliquent pourquoi connaître son historique médical est essentiel lors de la transition du milieu pédiatrique au milieu adulte. Ils partagent leurs expériences et donnent des conseils pour mieux gérer sa santé et anticiper les soins nécessaires. #PrendreEnvol #TransitionDeSoin #OncoJeunesse #SurvivantsDuCancer #CancerJeunes #parcoursdevie
Spreading Your Wings : How to better prepare for the transition to adult care after cancer?/Prendre Envol : Comment mieux préparer sa transition vers le milieu adulte?
In this video, the last in a series of 4, young survivors share, based on their personal experiences, the strategies they used to overcome the challenges of this key stage in their lives. They offer tips, advice, and stories they wish they had received themselves. #TakeFlight #CareTransition #YouthOncology #YoungCancerSurvivors #LifeJourney #CancerSurvivors
Dans cette vidéo, la dernière d’une série de 4, de jeunes survivants partagent, à partir de leur expérience personnelle, les stratégies qu’ils ont utilisées pour surmonter les défis rencontrés lors de cette étape clé de leur vie. Ils offrent astuces, conseils et témoignages qu’ils auraient aimé recevoir eux-mêmes. #PrendreEnvol #TransitionDeSoin #OncoJeunesse #CancerJeunes #ParcoursDeVie #SurvivantsDuCancer
Lymphoma Canada
Lymphoma Care in Canada
Information. Help. Hope.
Dealing with lymphoma can be overwhelming, whether you’re a patient yourself or you know someone who is. But you don’t have to face it alone. We connect patients, their family and friends, medical professionals, researchers, volunteers, and donors to build a strong lymphoma community. A community that conducts research to learn lymphoma’s causes, to develop better treatments, and to find a cure. A community that helps people talk about and cope with the fifth most common cancer in Canada. A community that invites you to get and give support.
Canadian Cancer Statistics Dashboard (CCSD)
The Canadian Cancer Statistics Dashboard (CCSD) provides user-friendly and interactive visualizations including up-to-date, projected estimates of cancer incidence and mortality across population groups and geographic regions. The CCSD was developed by the research team led by Dr. Darren Brenner and Dr. Tamer Jarada at the University of Calgary and the Arnie Charbonneau Cancer Institute, with funding from the Canadian Cancer Society. The CCSD leverages the efforts of the Canadian Cancer Statistics Advisory Committee and cancer data of the Provincial and Territorial Cancer Registries through the Canadian Cancer Registry and the Canadian Cancer Statistics publications.
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