The Journal of Medical Imaging and Radiation Sciences (JMIRS) began publishing health narratives in 2020, authored by patients and HCPs who described their experiences with radiation therapy and medical imaging. The new format was developed to encourage submissions that include a diversity of voices and perspectives, and to ensure that patients play an active role in […]
Background: Individuals with advanced cancer face the challenge of remaining engaged in life, while also contemplating death. However, there has been no validated measure of the adaptive capacity to balance these tasks, which has been termed “double awareness.” Aims: This study aimed to evaluate the psychometric properties of the novel Double Awareness Scale (DAS). Methods:
Question: What are the characteristics and context of adolescent and young adult patients with cancer who use medical assistance in dying (MAID)? Findings: In this retrospective cohort study including 34 adolescent and young adult patients with cancer, symptom burden rose in the year before MAID, with sharp increases beginning around month 5. Seventeen individuals received
Medical Assistance in Dying Use Among Adolescent and Young Adult Patients With Cancer Read More »
Background: The Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) is commonly used to categorize the severity of fear of cancer recurrence (FCR) defined as fear, worry, or concern about cancer returning or progressing. Evaluating the FCRI-SF factor structure and the clinical cut-off score in specific cancer populations and stages of survivorship is essential to determine
Objectives: Cancer in adolescents and young adults (AYAs; ages 15–39 years) is a rising global epidemic. Yet, AYAs remain an understudied population, and little is known about what research topics should be prioritised according to those with lived experience. The AYA Cancer Priority Setting Partnership (PSP) was established to identify the top 10 research priorities for
Researchers at the University of Calgary have developed 10 priorities for working with young people facing cancer. The top priority, determined after a consulting with hundreds of people with adolescent and young adult cancer (AYA) from across Canada, was addressing delays in diagnosis. The rest of the priorities span biomedical, psychosocial, financial, and health‑system challenges, representing a full
Young cancer patients set Canada’s top research priorities Read More »
New cancer drugs are very expensive. Most Canadians could never afford them without public coverage, even if they sold their homes and borrowed money from everyone they knew. Canada does not provide universal pharmacare (drug coverage). Provincial coverage decisions are complex – affected by political interests, changes in government, advocacy efforts, population size, and regional
Background: Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2). Methods:
Background: Online support groups (OSGs) are often a convenient way for many patients with cancer and cancer survivors to obtain information and support. However, not all OSGs are helpful, and in some cases, they may increase distress. Overall, there is a lack of clear evidence on the effects of OSGs, along with how and why
In September 2019, the International Psycho-oncology Society (IPOS) annual conference was held in Banff, Alberta with 4 days of talks, workshops, and presentations attracting >600 attendees from 50 different countries. This was the 21st annual conference, but for the first time the conference was officially patients included: “committed to incorporating the experience of patients and
Patients with common cancers are generally more likely to die from causes other than their cancer, according to research published in JNCI Cancer Spectrum. The study suggested that, for most common cancers, patients who survived more than 10 years after diagnosis were unlikely to die from their primary cancer. However, more than 80% of patients
Risk of Cancer-Specific Death May Remain Elevated for 30 Years Read More »
Cancer survivors have been increasingly advocating for research into the long-term effects of their treatments. Some researchers working on cancer survivorship issues engage survivors productively with their teams, but many do not, negatively impacting innovation in this field. Cancer survivors must be included in every stage of this research process.
What cancer survivors can teach cancer researchers Read More »
The obvious outcome from this study would seem to be to recommend breast cancer screening for female childhood cancer survivors, but the researchers emphasized that more discussion may be required before guidelines can be drafted.
As every cancer survivor and caregiver knows, the end of treatment does not mark the end of the need for support from the care team. We believe that it would benefit every individual affected by cancer if some, or all treatment providers communicated an awareness that survivorship is a continuation of the cancer journey, one
Introduction: Considerable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes. Methods
Importance: Patient-centered research is essential for bridging the gap between research and patient care, yet patient perspectives are often inadequately represented in health research. Objective: To leverage artificial intelligence (AI) and natural language processing (NLP) to analyze a large dataset of patient messages, defining patient concerns and generating relevant research topics, and to quantify the quality of
Adolescents and young adults aged 15–39 years diagnosed with cancer are faced with unique challenges, which affect key developmental milestones and can create complex care needs. The aim of this study was to reach international consensus on the minimum set of outcomes to measure through the development of a core outcome set (COS). The COS
Development of a core outcome set for adolescents and young adults with cancer Read More »
As the 8 patient partners serving on the PCORnet® Steering Committee, we stand at the forefront of a transformative movement in clinical research. PCORnet® Network Partners have been pioneers in integrating patient voices into every aspect of the research process, and we applaud the progress in operationalizing the Patient-Centered Outcomes Research Institute’s (PCORI) Framework for Patient Engagement
The Canadian Framework for the Care and Support of Adolescents and Young Adults with Cancer (the Framework) describes a national vision for the care and support of AYAs with this distressing disease. It was created to ensure AYAs experience meaningful participation, and achieve the best outcomes, throughout care and survivorship, as well as compassionate end-of
Canadian Framework for the Care and Support of Adolescents and Young Adults With Cancer Read More »
New data from the non-profit Angus Reid Institute in partnership with the Canadian Cancer Society finds nine-in-ten Canadians support increasing access to clinical trials for cancer patients. This comes as most believe these sorts of experimental treatments offer new medicine otherwise unavailable to most cancer patients (80% agree).
