Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.

This study identified the psychosocial problems that 752 patients from 3 states who had been diagnosed with 1 of the 10 most commonly occurring cancers indicated concerned them the most. Approximately 1 year after being diagnosed with cancer, 68.1% of patients were concerned with their illness returning, and more than half were concerned with developing a disease recurrence (59.8%) or had fears regarding the future (57.7%). In addition to these psychological problems focused on fear, approximately two-thirds (67.1%) of patients were concerned about a physical health problem, fatigue, and loss of strength. Two other physical health problems that concerned more than two-fifths of patients were sleep difficulties (47.9%) and sexual dysfunction (41.2%). More problems were reported by younger survivors (ages 18 -54 yrs), women, nonwhites, those who were not married, and those with a household income of less than $20,000 a year. Those patients currently in treatment for cancer reported on average significantly more problems (P Ͻ 0.001) and on average had a higher Cancer Problems in Living Scale (CPILS) total score (P Ͻ 0.001) compared with those not currently in treatment. In a comparison of respondents with one of the four most common cancers, the most concerns regarding problems in living and highest mean CPILS scores were reported by those diagnosed with lung cancer, followed by survivors of breast cancer, colorectal cancer, and prostate cancer. Cancer 2005;104(11 Suppl):2565-76.

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IntroductionCancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes.MethodsIndividuals diagnosed in 2007–08 and age 15–39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed.Results525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p < 0.01), Hispanics and non-Hispanic blacks (p < 0.001) were less likely to participate. 91% of survivors completing the initial survey completed the subsequent survey.DiscussionDespite the response rate, those who participated adequately reflected the population of AYA cancer survivors. The study demonstrates that cancer registries are valuable foundations for conducting observational, longitudinal population-based research on AYA cancer survivors.Implications for Cancer SurvivorsAchieving a reasonable response rate in this population is possible, but requires extensive resources.

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