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.

Impacts of COVID‐19 on caregivers of childhood cancer survivors

“…Delayed tumor diagnosis has been indicated elsewhere as a potential collateral effect of necessary COVID‐19 care modifications 37 . Likewise, delays in routine imaging and follow‐up care could impede diagnosis of surfacing late effects and may negatively impact patient health and caregiver psychological distress 38,39 . Caregivers of CCS may be experiencing increased anxiety, distress, and exacerbated posttraumatic symptoms during COVID‐19 40 .…”

Surveillance for radiation‐related late effects in childhood cancer survivors: The impact of using volumetric dosimetry

“…18 Given that full adherence to recommendations has been historically poor, minimizing unnecessary surveillance could improve the ability and willingness of survivors to follow recommendations. [20][21][22] In this respect, the category of diagnostic imaging and procedures is notable because it comprises colonoscopies, mammograms, and echocardiograms. The nearly 40% reduction in recommendations with VD in this category may be especially impactful because these tests entail greater invasiveness, medical risk, higher cost, potential for false positive findings and subsequent workup, and associated "scanxiety."…”

“…The significantly reduced mean number of recommended screening practices using VD has potential for increasing the low yield of some late effects surveillance practices 18 . Given that full adherence to recommendations has been historically poor, minimizing unnecessary surveillance could improve the ability and willingness of survivors to follow recommendations 20‐22 . In this respect, the category of diagnostic imaging and procedures is notable because it comprises colonoscopies, mammograms, and echocardiograms.…”

The COVID‐19 pandemic: Distance‐delivered care for childhood cancer survivors

“…Disruption to survivorship care, though necessary, requires urgent consideration of its impact on the medical and psychosocial well‐being of survivors. It is likely that diagnoses of emerging late effects may be delayed, survivors’ mental health may decline, and health behaviors may fall further below recommended guidelines, should survivorship care be interrupted 3 . This commentary suggests that health care organizations should actively encourage the evaluation of new care pathways to ensure the continuity and effectiveness of survivorship services during the pandemic.…”

“…The provision of regular survivorship care is therefore recommended worldwide 6 . Survivorship care facilitates the early detection and management of late effects, adherence to screening regimens, and survivors’ knowledge about their personal treatment history 3,7 . Survivorship care can also decrease unplanned emergency department presentations, 7 highlighting the importance of continuing survivorship care during the pandemic to reduce the burden on overextended emergency services.…”