Survey reveals caregiver priorities for quality end-of-life care in adolescents and young adults, suggesting the need for better alignment with patient needs.
BACLGROUND: Quality of end-of-life care for adolescents and young adults (AYAs) with cancer is often measured using administrative measures. METHODS: We surveyed 200 bereaved caregivers of AYAs (died 2003-2019 at age 12-39 after receiving care at one of three sites) to elicit perspectives about care quality in 7 domains. RESULTS: < 0.001); most communication and decision-making items also met this threshold, while most psychosocial and spiritual support items fell below this threshold. CONCLUSION: Caregivers affirmed priorities in AYA end-of-life care, which may help align care delivery with what matters most to patients and families.
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Guzman et al. (2026) studied this question.
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