Article/Paper

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

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.

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

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