Abstract
Background: Hematologic cancer survivors face complex long-term health challenges that require coordinated follow-up care. Survivorship care plans (SCPs) are designed to provide structured guidance on monitoring, prevention, and survivorship needs. However, the extent of SCP delivery among hematologic cancer survivors across the United States remains unclear. This study evaluated national trends and regional variations in SCP delivery, with a focus on disparities by race, insurance status, and socioeconomic factors.
Methods: We analyzed Behavioral Risk Factor Surveillance System data from 2017 to 2023, including adults with hematologic malignancies. Four SCP components, aligned with ASCO, NCCN, and IOM guidelines (written treatment summary, follow-up care instructions, written or printed instructions, and insurance coverage), were used to construct an SCP score (range 0 to 4). Participation in clinical trials was also assessed separately. Trends were examined nationally and regionally, grouped into pre-COVID (2017 to 2019), COVID (2020 to 2021), and post-COVID (2022 to 2023) periods. Weighted logistic regression was used to evaluate associations between SCP completion and sociodemographic factors, with odds ratios (OR), adjusted odds ratios (aOR), and 95% confidence intervals (CIs) reported.
Results: The national mean SCP score was 3.52 (95% CI [3.45, 3.59]), lowest in 2019 at 2.96 (95% CI [1.81, 4.11]) and highest in 2023 at 3.88 (95% CI [3.76, 4.01]). Only 15.7% of survivors received a complete SCP. While no significant change was seen during the COVID-19 pandemic, the odds of SCP completion declined by 68% post-COVID (OR=0.32, 95% CI [0.21, 0.51], p<0.001). Among survivors, 94% reported insurance coverage for treatment, but only 68.5% received a written treatment summary. Racial disparities were evident, with “Other race” (non-Hispanic) survivors showing 87% lower odds of SCP completion (aOR=0.13, 95% CI [0.04, 0.46], p=0.002), followed by Black (non-Hispanic) survivors with 66% lower odds (aOR=0.34, 95% CI [0.12, 0.94], p=0.038) compared to White (non-Hispanic) survivors. Insurance status and income were not significantly associated with SCP completion.
There were significant regional variations in SCP delivery. The Midwest had the lowest mean SCP score (3.41, 95% CI [3.30, 3.52]) and 74% lower adjusted odds of completion compared with the Northeast (aOR=0.26, 95% CI [0.13, 0.51], p<0.001). The South had the highest mean score (3.65, 95% CI [3.50, 3.81]). Despite high insurance coverage across regions, the delivery of written treatment summaries remained suboptimal. Clinical trial participation was highest in the South (22.7%) and lowest in the West (9.1%), with a national average of 18.9%.
Conclusion: Survivorship care plan delivery among hematologic cancer survivors remains critically low, with fewer than one in six receiving a complete plan. The post-COVID decline, persistent racial disparities, and regional variations highlight the urgent need for quality improvement efforts, standardized benchmarks, and equitable implementation of survivorship care plans nationwide.
