Bereaved Caregiver Perspectives on Quality of Care at the End of Life Among Adolescents and Young Adults with Cancer

Abstract

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:

Quality of care was highest for relationships with clinicians (63% caregivers considered all aspects high quality), and lowest for psychosocial and spiritual care (32%). Comfort and symptom management, quality of life, relationships with clinicians, medical care and treatment, and care needs and independence were rated as highly important to caregivers and AYAs, with all items exceeding a prespecified threshold for importance (p < 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.