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Assessing Palliative Care Needs Among Adolescent and Young Adult Patients with Cancer and Their Caregivers in South
Suheon Oh1, Seung Yeon Kwon2,3,4, Mikyung Park5,6
1Department of Pediatrics, Center for Pediatric Cancer, National Cancer Center, Goyang, South Korea.
Purpose:
Adolescents and young adults (AYAs) with cancer experience unique physical, psychosocial, and developmental challenges that differ from those of children and older patients. While palliative care can address these challenges, the care needs of AYAs with cancer and their families are underrecognized and inadequately supported globally and in South Korea. This study aimed to assess the unmet palliative care needs of AYAs with cancer and their caregivers in South Korea.
Methods:
A cross-sectional survey design was conducted using two validated instruments developed for AYA patients (15-39 years) and their caregivers. Between August 2023 and November 2024, participants were recruited from three major hospitals in South Korea. Descriptive and inferential statistics were used to determine domain-specific needs and group-level differences.
Results:
Communication and information needs were most frequently unmet across all groups, whereas physical needs were often rated as "already provided." Caregivers-especially of adolescent patients-reported greater unmet needs than patients. Conversely, young adult patients reported the lowest need across all domains. In the caregiver-centered survey, financial and bereavement support were top priorities.
Conclusion:
This study identified unmet palliative care needs, especially nonphysical ones, among AYA patients and their caregivers. The findings underscore the need for age-appropriate, culturally sensitive services, with a greater focus on communication/information and psychosocial care, and the importance of including caregivers' perspectives in building comprehensive palliative care models. Future studies should explore contextual factors that shape care perceptions and develop standardized screening tools to identify AYAs' specific needs.
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