Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure

Abstract

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.

Things that matter: Adolescent and young adult patients’ priorities during cancer care

“…Cancer patients aged 15–29 at diagnosis, seen at Dana‐Farber Cancer Institute (DFCI), Boston, Massachusetts, were surveyed from April 2014 to October 2017. Methods have been previously described . To be eligible, patients had to be literate in English and 1–6 weeks from diagnosis at first contact.…”

Ethical issues in the care of adolescent and young adult oncology patients

“…Several recent studies focusing on AYA cancer patients’ involvement in EOL discussions and decision‐making have found that most AYA patients desire to participate in EOL decision‐making and wish to be communicated with honestly . For example, one study found that 83% of AYA patients considered prognostic information to be extremely or very important . Additionally, a study of adolescents nearing EOL found that they comprehended the context and ramifications of their decisions .…”

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue

“…Parents of children with cancer rate the communication skills of their child's oncologist as a critical component of the illness and treatment experience, and parents are more likely to believe that oncologists provided high quality information when they also rate the provider's communication style highly . Better communication has also been associated with parental report of increased hope, decreased decisional regret, and improved psychosocial outcomes …”