Background: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. Aim: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. Design: Scoping review. This review was registered on Open Science Framework ( https://doi.org/10.17605/OSF.IO/SPTD7 ). Data sources: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. Results: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States ( n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews ( n = 33). Three main topics were identified: Physical symptom burden ( n = 26, 51%), Psychological and social needs ( n = 33, 65%), and end-of-life care ( n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. Conclusion: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.

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.

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. 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. 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. 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.

Background: Adolescents and young adults (AYAs) with life-limiting illnesses face unique challenges and often receive late or no palliative care (PC). This study examines the correlation between PC involvement and the intensity of end-of-life care among AYAs with nonmalignant life-limiting illnesses. Design: A retrospective cohort study analyzing population-based health care data from 2010 to 2018. Setting/Subjects: The study population included AYAs aged 15–39 who died in Ontario, Canada, from nonmalignant life-limiting illnesses during the study period ( n = 2313). Measurements: PC involvement was defined as at least one encounter with a PC provider. End-of-life (EOL) care intensity was measured using rates of emergency department visits, hospitalizations, intensive care unit admissions, and mechanical ventilation in the last 30 days of life. Results: Of the 2313 AYAs studied, 37.5% had at least one PC encounter during their lifetime. Specialist PC delivered ≥90 days before death was associated with lower intensity of EOL care, including fewer intensive care unit deaths (17% vs. 34% versus 31%, p < 0.0001) and emergency department visits (17% vs. 27% versus 21%, p = 0.0091) when compared to generalist PC and no PC, respectively. Conclusions: AYAs with nonmalignant illnesses received high EOL care intensity and had a high percentage of death in acute care settings. Specialist PC involvement was associated with improved EOL care outcomes compared with generalist and no PC.

Background: Adolescents and young adults (AYAs), defined as individuals aged 15–39 years, face unique medical, psychosocial, and existential challenges when living with life-limiting illness. Despite evidence supporting early palliative care integration, Canadian adult palliative care curricula lack formalized AYA-specific competencies. Healthcare providers consistently report insufficient preparation in this area. Methods: A descriptive cross-sectional needs assessment survey was administered nationally to physicians who completed Canadian adult palliative care residency training between 2019 and 2024. A multidisciplinary steering committee of experts in AYA palliative care and medical education, alongside a patient partner, guided the development of the bilingual 25-item questionnaire guided by an established framework for medical education survey design. The questionnaire assessed clinical exposure, self-rated knowledge across 20 competency areas, comfort levels across 21 competency areas, training needs and barriers, and preferred learning formats. Responses were anonymous. Descriptive statistics were used for analysis. Results: Of 71 responses received, 55 met eligibility criteria for analysis (response rate 35%, eligibility rate 77%). Only 31% of participants received AYA-specific training during residency. Most participants (82%) reported low comfort when caring for the youngest AYA age group (15–18 years). The greatest knowledge gaps were in pediatric-to-adult care transitions (69%), sexual health and fertility concerns (62%), and social support navigation (39%). Top training priorities were AYA developmental and psychosocial factors (75%), grief and bereavement support (65%), and care transitions (60%). The most common training barriers were limited clinical exposure (78%), lack of mentors (65%), and absence of AYA-specific programs (61%). Conclusions: Our findings revealed substantial gaps in training, knowledge, and comfort levels in providing AYA palliative care among recent graduates from the adult palliative care programs in Canada. This may represent an initial step towards the development of a competency-based AYA-focused residency training curriculum.