Project Forward: A Population-Based Cohort Among Young Adult Survivors of Childhood Cancers

Abstract

Background Childhood cancer survivors (CCS) face increased risk of morbidity and are recommended to receive lifelong cancer related follow-up care. Identifying factors associated with follow-up care can inform efforts to support the long-term health of CCS. Methods Eligible CCS (diagnosed between 1996-2010) identified through the Los Angeles County Cancer Surveillance Program responded to a self-report survey that assessed demographic, clinical, health care engagement, and psychosocial risk and protective factors of recent (prior 2 years) cancer-related follow-up care. Weighted multivariable logistic regression was conducted to identify correlates of care. All statistical tests were 2-sided. Results The overall response rate was 44.9%, with an analytical sample of n = 1,106 (54.2% Hispanic; mean [SD] ages at survey, diagnosis, and years since diagnosis were 26.2 [4.9], 11.6 [5.4], and 14.5 [4.4] years, respectively). Fifty-seven percent reported a recent cancer-related visit, with lower rates reported among older survivors. Having insurance, more late effects, receipt of a written treatment summary, discussing long-term care needs with treating physician, knowledge of the need for long-term care, having a regular source of care, and higher healthcare self-efficacy were statistically significantly associated with greater odds of recent follow-up care, while older age, Hispanic or Other ethnicity (vs. non-Hispanic White), and years since diagnosis were associated with lower odds of recent care (all P’s<.05). Conclusions Age and ethnic disparities are observed in receipt of follow up care among young adult CCS. Potential intervention targets include comprehensive, ongoing patient education, provision of written treatment summaries, and culturally-tailored support to ensure equitable access to and utilization of care.

Insurance coverage change and survivorship care among young adult survivors of childhood cancer

“…A total of 1106 survivors participated in the Project Forward survey and were included in this study. 29 Most respondents were 18-26 years of age at survey, male, diagnosed before the Children's Oncology Group (COG) Guidelines were published in 2004, of Hispanic/Latino race/ethnicity, single, without children, highly educated, employed part-time or unemployed, and lived with their parents at the time of survey (see Table 1). At diagnosis, 666 (58%) of CCS were privately covered, 386 (37%) were publicly covered, and 54 (5%) were uninsured (see Figure 2).…”

“…Study participants were asked to complete a survey regarding their survivorship care, administered either electronically or on paper. 29 Responder analyses of demographic and clinical variables from registry data indicated no differences between cohort responders and nonresponders in age at diagnosis, years since diagnosis, age at study, cancer diagnosis, or stage of disease at diagnosis. 29 However, survey respondents were more likely to be female (vs. male), Non-Hispanic/Latino white, and higher (vs. lower) socioeconomic status (SES).…”

“…29 Responder analyses of demographic and clinical variables from registry data indicated no differences between cohort responders and nonresponders in age at diagnosis, years since diagnosis, age at study, cancer diagnosis, or stage of disease at diagnosis. 29 However, survey respondents were more likely to be female (vs. male), Non-Hispanic/Latino white, and higher (vs. lower) socioeconomic status (SES). 29 These differences were accounted for using survey weights, described in the analysis section below.…”

“…This study used data collected as part of the Project Forward Cohort, a population-based, observational study of CCS in Los Angeles (LA) County. 29 Participants in Project Forward were identified and recruited through the Los Angeles Cancer Surveillance Program, the population-based cancer registry for LA County and part of the National Cancer Institute-funded Surveillance, Epidemiology, and End-Results (SEER) program. 30 Eligible participants were diagnosed with cancer within the age of 20 years while living in LA County from 1996 to 2010 and were older than 18 years at the time of study recruitment (from 2015 to 2017).…”

“…29 However, survey respondents were more likely to be female (vs. male), Non-Hispanic/Latino white, and higher (vs. lower) socioeconomic status (SES). 29 These differences were accounted for using survey weights, described in the analysis section below. This study was approved by the institutional review board at the University of Southern California (HS-14-00817), the California State Committee for the Protection of Human Subjects, and the California Cancer Registry.…”