Review of Adherence-Related Issues in Adolescents and Young Adults With Cancer

Abstract

Overall, the evidence base for adherence and strategies to promote it in AYAs with cancer is woefully lacking. There is a need for high-quality studies that target clinically important questions, randomized controlled trials of theoretically based interventions, and development and evaluation of training programs for oncology staff in the special issues faced by AYAs with cancer.

Congruence of Reproductive Concerns Among Adolescents With Cancer and Parents: Pilot Testing an Adapted Instrument

“…Chronically ill adolescents experience similar desires as their healthy peers and have been shown to deny their cancer diagnosis as an attempt to regain normalcy. 37,38 However, this may not be recognized during a cancer crisis. Additionally, as seen in this study, there are discrepancies between parent and child reports on discussions about fertility.…”

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

“…Lastly, several psychosocial factors playing a role in clinical trial enrollment may also increase or decrease adherence to clinical trials among adolescents. 54 Some of the factors may include: (1) openness and frequency of communication between the adolescent, parents, and providers; (2) the adolescent' s role in making decisions at different aspects of treatment; (3) the adolescent' s knowledge of treatment and treatment-related adverse effects; and (4) 64 In addition to future research needs, there are several practice-based and applied considerations that can be implemented to improve enrollment and adherence among adolescents. Recognizing and respecting the need for autonomy versus dependency in adolescent medical decision-making is important for both parents and providers.…”

“…However, there is a dearth of research exploring factors affecting clinical trial adherence among adolescents diagnosed with cancer. 54 A few research studies have examined "compliance" and/or "adherence" to cancer treatment in this population. 43,51,54,55 However, it is unclear if these treatments were part of a clinical trial or a personalized treatment regimen prescribed by a physician.…”

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

“…Nonadherence to recommended treatment and follow-up care contributes to poor clinical outcomes in AYA patients with cancer. 71,72 Failure to keep up with appointments can lead to delayed identification of side effects, complications, or secondary cancers.…”

“…71 Nonadherence to oral chemotherapy contributes to reduced treatment efficacy and increased risk of recurrence. Available evidence from clinical trials that have included AYA patients with leukemia and lymphoma suggests that a substantial portion of AYA patients with cancer (27%-63%) have difficulties adhering to their oral treatment regimens.…”