Who Participates in an Adult Cooperative Group Trial for Adolescent and Young Adults (AYAs)? Baseline Demographic and Psychosocial Characteristics of AYAs Enrolled On Intergroup Trial C10403 for Acute Lymphoblastic Leukemia (ALL)

AYAs with ALL are increasingly recognized as a distinct population with unique biomedical and psychosocial characteristics. However, little is known about factors that may influence participation in, and compliance with, the challenging treatment regimens that are currently being tested in this patient population. U.S. Intergroup trial C10403 was designed to prospectively evaluate a successful pediatric treatment approach in AYAs with ALL, with an additional aim to assess demographics, social support, and potential barriers to care that may impact outcomes. We describe here for the first time the baseline characteristics of patients enrolled on C10403 in order to begin to understand the personal challenges they face during treatment.

Self-administered surveys were conducted at specified time points over the course of treatment. Survey 1, which explored demographics, decision making, and social support, was administered to patients following completion of induction chemotherapy. Survey 2, which evaluated treatment delays and barriers to care, was administered after remission consolidation at about 6 months. Descriptive statistics were used to summarize patient demographics and responses to survey questions.

Between November, 2007 and July, 2012, 296 patients across the United States aged16–39 were enrolled on C10403; 269 signed consent to participate in the survey study. 183 (68%), 129 (48%), and 193 (72%) completed survey 1, survey 2, or either survey. Of the survey respondents, 61% were male, 73% white, 11% African American, and 11% Hispanic. Median age was 24 years (yrs) (range 17–39); 17%, 62%, and 22% were <20, 20–29, and 30–39 yrs, respectively, which was representative of the overall study population. 27% reported a prior medical condition requiring medication. Of these, mental illness (anxiety, depression, attention deficit disorder) was most prevalent (33%). The majority reported a family income <$50,000 (66%), 36% reported <$20,000. Most were high school graduates (87%), 26% had a college degree. Prior to diagnosis, 27% were students, 56% worked full or part-time, and 15% were unemployed. Following consolidation, 74% were unemployed/on disability.

Regarding social support, 51% of AYAs still live with parents while 36% live with their own families, and 6% live alone. 97% of those <20 yrs live with parents, those 20–29 yrs are split between living with parents (47%) or with their own families (36%), while 64% of those 30–39 yrs live with their own family. In general, 87% of AYAs reported several people they can rely on for assistance. All AYAs <20 yrs have at least 2 people they regularly rely upon; over half list at least 6 people. In contrast, 17% of those 20–29 yrs and 12% of those 30–39 yrs report no one or just 1 person on whom they can depend for help. 62% of those 20–29 yrs feel that they are primarily responsible for their own leukemia care, while 80% of those <20 yrs cite parents as fulfilling that role. Only 16% of AYAs report attending clinic appointments alone, most of whom are 20–29 yrs. There was a significant association between older age and self-reliance for leukemia care (p<.0001).

AYAs report that referral to specific treatment centers was primarily initiated by a physician (78%) rather than self or family. After protocol initiation, 35% recall that some chemotherapy was missed or delayed; 43% report ≥2 treatment delays. Delays were primarily due to low blood counts (52%) or toxicity (27%); only 7% were due to modifiable patient circumstances. Most patients did not report barriers to receiving care; however 9% had childcare difficulties, 14% had conflicting commitments, 15% had trouble keeping track of appointments, 18% had difficulty with co-pays, 19% had transportation issues, and 59% report long clinic wait times.

AYAs enrolled on C10403 tend to be white, of middle/low income, and to have been previously healthy. Contrary to what has been hypothesized about AYAs, in general, they self-report a strong social support structure, and do not perceive substantial barriers to receiving treatment. Older AYAs are more independent and report that they, rather than others, are most responsible for their own leukemia care. Additional surveys are being distributed at treatment completion that explore whether these findings persist throughout the 2–3 year period of ALL therapy and the post-treatment follow up period.

No relevant conflicts of interest to declare.