Abstract
Simple SummaryAdolescents and young adults (AYAs) are a unique population: they are a diverse group between the ages of 15–39 years with distinct needs and experience numerous developmental milestones during this age range. Notably, AYAs have faced worse outcomes in cancer care, both with shorter survival and worse quality of life compared to children and older adults. Understanding AYAs’ psychosocial, communication and informational needs is crucial to addressing this disparity and improving cancer care delivery. By hearing directly from AYAs, we are able to capture nuances of their experiences and provide clinical recommendations to healthcare providers involved in the care of AYAs with cancer. This study specifically interviewed AYAs with cancer to understand their perspectives, identify needs and to develop recommendations for cancer care delivery and accommodations across the cancer experience.Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.
Highlights
Non-uniform treatment paradigms in conjunction with differences in tumor biology and lower accrual to clinical trials in the AYA population have led to marginal improvements in overall survival over the last three decades compared to therapeutic improvements seen in younger and older patients [3,11–15]
The focus groups for this study were conducted as an extension of a quality improvement initiative at Memorial Sloan Kettering Cancer Center (MSK; New York, NY, USA) to design and develop a cancer care program for AYAs
Given the inherent complexity of an AYA’s developmental stage, this study focused on a more detailed understanding of the nuanced variables contributing to these situations and one’s lived experience. These focus groups build on prior literature and identify novel themes related to critical domains in the care of AYA cancer patients: social relationships and independence; uncertainty regarding the future; communication preferences; navigational and social needs and supports; and LGBTQ+ well-being and healthcare delivery
Summary
Adolescents and young adults (AYAs) with cancer are distinct, both physically from a disease pathophysiology perspective and psychologically from a developmental perspective [1]. AYAs commonly face worse outcomes in cancer care, both with shorter survival and worse quality of life, compared with children and older adults [5,6]. Few studies in psychosocial oncology capture the unique ways cancer treatment interacts with, disrupts and promotes these developmental processes during and after treatment [1,7,8]. This is due in large part to several factors, including: differences in the nature and behavior of AYA cancers; lower participation in clinical trials; varying treatment plans; and inconsistent use of supportive services, such as social work, fertility services, sexual health, physical and occupational therapy, pain and palliative care and rehabilitation medicine [9,10]. Non-uniform treatment paradigms in conjunction with differences in tumor biology and lower accrual to clinical trials in the AYA population have led to marginal improvements in overall survival over the last three decades compared to therapeutic improvements seen in younger and older patients [3,11–15]
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