Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15–39): A Qualitative Study

Abstract

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.

Analysis of Cancer Knowledge, Attitudes, and Practices in Adolescents and Young Adults in Two Texas Rural Communities

“…Historically, adolescents and young adults diagnosed with cancer have been an understudied population, and their unique needs, care experiences, and outcomes are not well understood. 7 - 9 In a research study of adolescent narratives and young adult cancer survivorship, participants referenced the importance of building awareness among age groups; encouraging personal health care focus; and expanding knowledge of the far-reaching psychological, social, and medical impacts, both during and beyond the treatment phase. 10 These experiences have important implications for health seeking behaviors, including how they interpret symptoms and make self-management decisions.…”

Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort

“…For young people who were receiving SOME-TYA-PTC care again, this showed some of the difficulties which might be associated with navigating care between hospitals. As a core competency, the importance of communication has been clearly demonstrated in other studies 2 9 19 28. Much in the way that age-appropriate care is fostered by environment, this may also suggest that communication is influenced by place of care 19.…”

“…The landscape of cancer care for young people has developed significantly within England over the past three decades 1. It is recognised that a cancer diagnosis at a key developmental time-point causes disruption for young people, including long-term and short-term impacts on their physical and mental well-being 2–4. Studies show a cancer diagnosis can cause prevalent biographical disruption to areas such as education, employment and the development of social and romantic relationships for this population 5.…”

How dignity‐related distress interacts with quality of life in young adult patients with cancer during the active treatment stage: A network analysis

“…Young patients often return to daily life after treatment, but inevitable changes such as worries about the future, personal career, self-worth, and family role keep them in a state of insecurity. 25 Also, Husson et al (2017) found that being out of contact with school or work leads to lower levels of physical and mental QoL, and these associations may be reciprocal. 26 Thus, developmental distress closely interplays with multiple QoL domains, especially with mental domains such as SF, RE, and MH.…”

“…The consensus is that AYAs all belong to a specific age group with the life purpose of independence and development. Young patients often return to daily life after treatment, but inevitable changes such as worries about the future, personal career, self‐worth, and family role keep them in a state of insecurity 25 . Also, Husson et al.…”