Cancer is the leading disease‐related cause of death in adolescents and young adults (AYAs). This population faces many short‐ and long‐term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.
BACKGROUND: Adolescents and young adults (AYAs) with cancer generally want to engage in decision-making but are not always able to do so. We evaluated cancer treatment decision-making among AYAs, including decisional engagement and regret. METHODS: We surveyed 203 AYA patients with cancer aged 15 to 29 (response rate 74%) treated at a large academic center and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report decision-making preferences and experiences (Decisional Roles Scale) and the extent to which they regretted their initial treatment decision (Decisional Regret Scale) assessed at baseline and 4 and 12 months later. RESULTS: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents. Although most AYAs held roles they preferred, those who did not reported holding more passive roles relative to oncologists (P < .0001) and parents (P = .002) than they desired. Nearly one-quarter of patients (24%; 47 of 195) experienced regret about initial cancer treatment decisions at baseline, with similar rates at 4 (23%) and 12 (19%) months. In a multivariable model adjusted for age, decisional roles were not associated with regret; instead, regret was less likely among patients who trusted oncologists completely (odds ratio 0.17 [95% confidence interval 0.06–0.46]; P < .001) and who reported that oncologists understood what was important to them when treatment started (odds ratio 0.13 [95% confidence interval 0.04–0.42]; P < .001). CONCLUSIONS: Nearly one-fourth of AYA patients expressed regret about initial treatment decisions. Although some AYAs have unmet needs for decisional engagement, attributes of the patient-oncologist relationship, including trust and mutual understanding, may be most protective against regret.
Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient's likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the importance of efforts to improve communication with this young population.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.