Clinical Trial Participation and Time to Treatment Among Adolescents and Young Adults With Cancer: Does Age at Diagnosis or Insurance Make a Difference?

Abstract

A B S T R A C T PurposeBecause adolescent and young adult (AYA) patients with cancer have experienced variable improvement in survival over the past two decades, enhancing the quality and timeliness of cancer care in this population has emerged as a priority area. To identify current trends in AYA care, we examined patterns of clinical trial participation, time to treatment, and provider characteristics in a population-based sample of AYA patients with cancer. MethodsUsing the National Cancer Institute Patterns of Care Study, we used multivariate logistic regression to evaluate demographic and provider characteristics associated with clinical trial enrollment and time to treatment among 1,358 AYA patients with cancer (age 15 to 39 years) identified through the Surveillance, Epidemiology, and End Results Program. ResultsIn our study, 14% of patients age 15 to 39 years had enrolled onto a clinical trial; participation varied by type of cancer, with the highest participation in those diagnosed with acute lymphoblastic leukemia (37%) and sarcoma (32%). Multivariate analyses demonstrated that uninsured, older patients and those treated by nonpediatric oncologists were less likely to enroll onto clinical trials. Median time from pathologic confirmation to first treatment was 3 days, but this varied by race/ethnicity and cancer site. In multivariate analyses, advanced cancer stage and outpatient treatment alone were associated with longer time from pathologic confirmation to treatment. ConclusionOur study identified factors associated with low clinical trial participation in AYA patients with cancer. These findings support the continued need to improve access to clinical trials and innovative treatments for this population, which may ultimately translate into improved survival.

Influencing Referral of Adolescents and Young Adults With Cancer to Sites With Higher Rates of Trial Enrollment

“…6 In a Surveillance, Epidemiology, and End Results (SEER) cancer registry study in 15-to 39-yearold AYAs with selected diagnoses, those seeing a pediatric oncologist were 7 times as likely to be enrolled compared with those treated by medical oncologists, controlled for age, insurance status, cancer type, and cancer stage. 7 When pediatric centers are part of a university program such that a single institutional review board can approve protocols and patients can be enrolled from either the pediatric or adult programs, rates of enrollment can increase. Dedicated AYA programs have been established at many cancer centers across the country, and they have the potential to increase enrollment rates by focusing efforts on targeting AYA patients and promoting available CTs.…”

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

“…1,2 However, rates of accrual to potentially life-saving clinical trials are significantly lower among adolescent (15-19 years) and young adult (20-34 years) cancer survivors, compared with children and adults. 3 Approximately 20% of 15-to 19-year-olds diagnosed with cancer are treated at institutions that participate in National Cancer Institute (NCI)-sponsored clinical trials and only ∼10% are enrolled in a clinical trial. 4 Numerous biological, regulatory, systemic, and practice-related challenges have been noted as reasons for poor clinical trial enrollment among adolescents diagnosed with cancer.…”

“…4 Numerous biological, regulatory, systemic, and practice-related challenges have been noted as reasons for poor clinical trial enrollment among adolescents diagnosed with cancer. 5 Some difficulties include lack of age-, diagnosis-, and stage-specific clinical trials, 3,6 poor physician referral rates, 3,7 and policy and legal regulatory barriers regarding age and access to medical centers where clinical trials are offered. 6 Once enrolled, adherence to clinical trials is challenging due to the long-term commitment to adhering to the study protocol and multiple visits to the treatment facilities, which may be burdensome for adolescent patients and their families.…”

“…6 Once enrolled, adherence to clinical trials is challenging due to the long-term commitment to adhering to the study protocol and multiple visits to the treatment facilities, which may be burdensome for adolescent patients and their families. Although these factors and other considerations have been well characterized, [3][4][5][6][7] less is known about the role psychosocial factors play as barriers or facilitators to an adolescent' s decision to enroll in and adhere to a clinical trial. Although this decision is an important one for all individuals diagnosed with cancer, it may be particularly difficult for adolescent patients, given the cognitive, developmental, legal, and ethical issues unique to this population.…”

Increasing the Number of Clinical Trials Available to Adolescents Diagnosed With Cancer

“…1,2 Many factors contribute to this observation, including a relative lack of trial availability. The most common types of cancers among adolescents aged 15 to 17 years are germ cell tumors, lymphoma, sarcoma, leukemia, and brain tumors, each of which is rare among the totality of all cancers.…”