Adherence to Surveillance for Second Malignant Neoplasms and Cardiac Dysfunction in Childhood Cancer Survivors: A Childhood Cancer Survivor Study

Abstract

Purpose: To evaluate childhood cancer survivors' adherence to surveillance protocols for late effects of treatment and to determine the factors affecting adherence.

Methods: Between 2014 and 2016, 11,337 survivors and 2,146 siblings in the Childhood Cancer Survivor Study completed a survey ascertaining adherence to Children's Oncology Group (COG) guidelines for survivors at high risk for second malignant neoplasms or cardiac dysfunction and to the American Cancer Society (ACS) cancer screening guidelines for average-risk populations. Adherence rates and factors affecting adherence were analyzed.

Results: Median age at diagnosis was 7 years (range, 0-20.9 years), and median time from diagnosis was 29 years (range, 15-47 years). Among high-risk survivors, adherence to COG breast, colorectal, skin, and cardiac surveillance was 12.6% (95% CI, 10.0% to 15.3%), 37.0% (34.1% to 39.9%), 22.3% (21.2% to 23.4%), and 41.4% (40.1% to 42.7%), respectively. Among average-risk survivors, adherence to ACS breast, cervical, and colorectal screening was 57.1% (53.2% to 61.0%), 83.6% (82.7% to 84.5%), and 68.5% (64.7% to 72.2%), respectively. Twenty-seven percent of survivors and 20.0% of primary care providers (PCPs) had a survivorship care plan (SCP). For high-risk survivors, SCP possession was associated with increased adherence to COG breast (22.3% v. 8.1%; prevalence ratio [PR], 2.52; CI, 1.59 to 4.01), skin (34.8% v 23.0%; PR, 1.16; CI, 1.01 to 1.33), and cardiac (67.0% v 33.1%; PR, 1.73; CI, 1.55 to 1.92) surveillance. For high-risk survivors, PCP possession of a SCP was associated only with increased adherence to COG skin cancer surveillance (36.9% v 23.2%; PR, 1.24; CI, 1.08 to 1.43).

Conclusion: Guideline adherence is suboptimal. Although survivor SCP possession is associated with better adherence, few survivors and PCPs have one. New strategies to improve adherence are needed.

FIG 1.

Changes in adherence to the Children’s Oncology Group’s high-risk screening guidelines 2003, 2007, and 2016. (^a) When breast cancer screening was assessed in 2003, 2007, and 2016, there were 311, 339, and 382 eligible survivors at each time point, respectively. In 2003, 2007, and 2016, 118, 29, and 50 survivors were adherent to breast cancer screening, respectively. Between 2013 and 2016, adherence statistically decreased (P < .001). (^b) When colorectal cancer screening was assessed in 2003, 2007, and 2016, there were 468, 663, and 886 eligible survivors at each time point, respectively. In 2003, 2007, and 2016, 67, 189, and 363 survivors were adherent to breast cancer screening, respectively. Between 2013 and 2016 adherence statistically increased (P < .001). (^c) When cardiac dysfunction screening was assessed in 2003, 2007, and 2016, there were 1,386, 1478, and 1,545 eligible survivors at each time point, respectively. In 2003, 2007, and 2016, 310, 423, and 594 survivors, respectively, were adherent to cardiac dysfunction screening. Between 2013 and 2016, adherence statistically increased (P < .001).