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

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 and 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 = 1106 (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 health-care self-efficacy were statistically significantly associated with greater odds of recent follow-up care, whereas older age, Hispanic or Other ethnicity (vs non-Hispanic White), and years since diagnosis were associated with lower odds of recent care (all Ps < .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 the utilization of care.

Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study.

BACKGROUND: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI's Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities. METHODS: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age-onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies. RESULTS: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12- to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research. CONCLUSIONS: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors. IMPACT: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.

Population-Based Survey Methods for Reaching Adolescent and Young Adult Survivors of Pediatric Cancer and Their Parents.

PURPOSE: Contacting childhood cancer survivors (CCS) to assess reasons for declining receipt of follow-up care after treatment is difficult and participation in surveys may be low, resulting in biased results. We sought to demonstrate effective recruitment and population-based sampling methods to improve response and minimize bias. METHODS: Four hundred and seventy CCS diagnosed between 2000 and 2007 at two hospitals in Los Angeles County were selected from the California Cancer Registry and were 15-25 years of age at the time of interview. Surveys of survivors and their parents were completed by multiple methods including mail, online, and telephone. Effectiveness of "plain" versus "designer" formatting of study materials was tested. Variables associated with response were analyzed using univariate and multivariable methods. Effort required for recruitment was quantified. RESULTS: Fifty percent of survivors (n = 235) and 36.5% of parents (n = 171) responded, and there were 160 parent-child dyads among them. Among located survivors, 61% participated. Response was higher for women, parents of younger survivors, and those from higher socioeconomic status areas. Among Hispanics, no variables were related to response. More effort was required to reach men and older survivors, but efforts beyond 15 calls and 7 remailings were unproductive. Formatting (i.e., plain vs. designer) did not affect response. CONCLUSION: Efforts to reach survivors must include multiple methods to be successful. Use of an intensive recruitment strategy and population-based sample resulted in a largely representative sample of CCS, especially for Hispanics. Expensive design efforts had little effect on recruitment, suggesting that plainer materials are sufficient. This example may inform similar studies.