TY - JOUR
T1 - Longitudinal prognostic communication needs of adolescents and young adults with cancer
AU - Sisk, Bryan A.
AU - Fasciano, Karen
AU - Block, Susan D.
AU - Mack, Jennifer W.
N1 - Funding Information:
Bryan A. Sisk was supported by a grant from the National Center for Advancing Translational Sciences of the National Institutes of Health (grant UL1 TR002345) for work performed as part of the current study. Susan D. Block receives personal fees as the Palliative Care Editor for UpToDate for work performed outside of the current study. Jennifer W. Mack received funding from the Young Adult Program at the Dana-Farber Cancer Institute and the Korostoff-Murray family for work performed as part of the current study. Karen Fasciano made no disclosures. Supported by a grant from the National Center for Advancing Translational Sciences of the National Institutes of Health (grant UL1 TR002345 [to Bryan A. Sisk]) and funding from the Young Adult Program at the Dana-Farber Cancer Institute (to Jennifer W. Mack) and the Korostoff-Murray family (to Jennifer W. Mack). As previously described, we surveyed AYA patients with cancer who were aged 15 to 29 years at the time of diagnosis and their oncologists at Dana-Farber Cancer Institute (DFCI) in Boston, Massachusetts, between April 2014 and October 2017. Although the AYA age range in the United States is 15 to 39 years, we studied a narrower spectrum to focus on communication issues that younger patients might experience. Patients were eligible if they spoke and read English, were 1 to 6 weeks from their diagnosis at the time of first contact, and their oncologist permitted contact. Eligible patients were identified through review of clinic and medical records. A total of 303 patients were eligible during the study time period, and 275 were approached (28 patients were missed due to logistical challenges). Patients aged <18 years provided assent and parents/guardians provided consent.
Publisher Copyright:
© 2019 American Cancer Society
PY - 2020/1/15
Y1 - 2020/1/15
N2 - Background: Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time. Methods: The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis. Results: The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P =.002 compared with baseline), and at 12 months (81%; P =.02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P =.44 compared with baseline), or at 12 months (11%; P =.27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P =.16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration. Conclusions: The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.
AB - Background: Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time. Methods: The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis. Results: The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P =.002 compared with baseline), and at 12 months (81%; P =.02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P =.44 compared with baseline), or at 12 months (11%; P =.27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P =.16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration. Conclusions: The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.
KW - adolescent and young adult (AYA)
KW - cancer
KW - communication
KW - health care communication
KW - physician-patient relationship
UR - http://www.scopus.com/inward/record.url?scp=85073995437&partnerID=8YFLogxK
U2 - 10.1002/cncr.32533
DO - 10.1002/cncr.32533
M3 - Article
C2 - 31568584
AN - SCOPUS:85073995437
VL - 126
SP - 400
EP - 407
JO - Cancer
JF - Cancer
SN - 0008-543X
IS - 2
ER -