Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

The Delivery of Palliative and End-of-Life Care to Adolescents and Young Adults Living with Cancer: A Scoping Review.

The primary purpose of this scoping review was to provide an overview of the existing evidence on the delivery of palliative and end-of-life care to adolescents and young adults (AYAs) living with cancer, by identifying knowledge gaps and discussing the key characteristics and types of evidence in this field. This study employed a JBI scoping review design. CINAHL (EBSCO), Embase (Elsevier), MEDLINE (Ovid), APA PsycINFO (EBSCO), and Web of Science (Science Citation Index Expanded and Social Sciences Citation Index; Clarivate Analytics) databases were searched along with grey literature sources to February 2022 for related studies on the delivery of palliative and end-of-life care to AYAs. No search restrictions were applied. Two independent reviewers screened titles, abstracts, and full-text articles for eligibility, and they extracted data from studies that met the inclusion criteria. A total of 29,394 records were identified through our search strategy and 51 studies met the inclusion criteria of the study. The studies were published between 2004 and 2022, with the majority from North America (65%). The included studies involved patient, healthcare provider, caregiver, and public stakeholders. Their primary foci were often on end-of-life outcomes (41%) and/or advance care planning/end-of-life priorities and decision-making (35%). This review identified several evidence gaps within the field, including a focus primarily on patients who have died. Findings highlight the need for more collaborative research with AYAs on their experiences with palliative and end-of-life care, as well as their involvement as patient partners in research.