Emilie Muth,Nicole Maseja,Andrew Harper,Siwei Qi,Linda Watson,Claire Link,Janet Vandale,Kathleen Reynolds,Ursula M Sansom-Daly,James Silvius,Miranda M Fidler-Benaoudia
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引用次数: 0
Abstract
Importance
Adolescents and young adults are a unique cancer population that require tailored cancer care. Although literature suggests insufficient palliative care for these individuals, the utilization and context surrounding medical assistance in dying (MAID) in adolescent and young adult patients with cancer is unexplored.
Objective
To describe MAID utilization and experiences among adolescent and young adult patients with cancer.
Design, Setting, and Participants
This mixed-methods, retrospective cohort study included all patients in Alberta, Canada, diagnosed with a first primary cancer between age 15 and 39 years who received MAID for cancer before age 45 years from 2016 to 2022. The analysis was performed from May 2024 to February 2026.
Main Outcomes and Measures
Descriptive statistics summarized patient, cancer, supportive care, and MAID characteristics. Symptom complexity and burden in the year before death, using the Edmonton Symptom Assessment System-revised (ESAS-r) were modelled. Qualitative thematic analysis of long-hand medical charting of health care professionals was conducted to understand the context leading to MAID. Integration of quantitative and qualitative findings was undertaken using a joint display.
Results
Overall, 34 adolescent and young adult patients (median [range] age, 33.44 [15.79-39.10] years) with cancer received MAID, with provisions peaking in 2020. Eighteen were female individuals (52.9%), 31 (91.2%) lived in an urban zone, 10 (29.4%) had children, and more than half received at least 3 types of cancer treatment. The median (range) time from advanced cancer diagnosis to provision was 1.1 (0.1-14.5) years, yet half of individuals received specialist palliative care less than 3 months prior to death. Symptom burden significantly increased over the year before death for all domains, with rapid rises visually observed beginning around month 5 prior to MAID. Overall, 10 of 14 (71.4%) reported high symptom complexity in the last month of life, with symptom scores highest for tiredness, poor well-being, pain, and drowsiness. Twenty-four of 30 (80%) reported a loss of ability to engage in activities making life meaningful at MAID provision. Qualitative themes offered context into the patient experience and included social isolation, previous experience with cancer death, wanting control, and achieving death acceptance. Finally, the joint display showed points of convergence between quantitative and qualitative results.
Conclusions and Relevance
This cohort study suggests that health care professionals may use advanced disease diagnosis or patient-reported symptom scores to trigger timely specialist palliative care referrals, which may reduce suffering and improve experiences at end of life for adolescent and young adult patients with cancer.
期刊介绍:
JAMA Oncology is an international peer-reviewed journal that serves as the leading publication for scientists, clinicians, and trainees working in the field of oncology. It is part of the JAMA Network, a collection of peer-reviewed medical and specialty publications.