Registries of Excellence: Improving Research Follow-up and Research Availability of Adolescent and Young Patients in the Population-based Cancer RegistryRegistry-based research initiatives involving adolescent and young adult cancer patients are severely hampered by poor response rates and large numbers of patients lost to follow-up. The purpose of this study is to directly contact the AYA patients from the Los Angeles registry catchment area as they are first reported to the registry to validate patient identifiers and contact information. The reasons for the high proportion of young adult patients for whom the patient contact information does not appear to be valid and the characteristics of patients who are subsequently lost to follow-up will be determined. Twelve months after initial contact, the patients will be recontacted to again update their identifiers and contact information. The AYA age group for this project is 18-39 years of age to exclude minors. Using this method, opportunities for improving research capability and survival statistics will be evaluated.BackgroundThe last two decades have seen dramatic improvements in cancer treatment for children and older adults which has translated into observable differences in survival. In contrast, adolescents and young adults (AYA) have shown little improvement in 5-year survival rates during the same time period, as discussed in a recent NCI/SEER Monograph on Cancer in AYAs. Furthermore, recruitment of AYA patients for research and clinical trials is poor. The need has become clear for better population-based research on the etiology, treatment, survival and quality of life of AYAs.A Progress Review Group (PRG) was created in 2005 by the National Cancer Institute and the Lance Armstrong Foundation to address these issues. The PRG identified various potentially intervenable factors which may contribute to poorer survival rates including access to care, inconsistent treatment practices and suboptimal referral patterns. Many of these factors are assumed to be related to the fact that AYAs have the highest uninsured rate of any age group in the U.S. and to the high mobility of this group.Patient contact studies are also proving to be increasingly difficult. In a current population-based study, up to 40% of the young adult Hodgkin lymphoma subjects are not locatable. Losses such as these threaten the validity and generalizability of research results.Furthermore, the follow-up information obtained by the registries is crucial in calculating the survival rates. The passive follow-up methods currently used by the cancer registries in the U.S. are increasingly ineffective for the AYAs due, in part, to the high mobility of this age group. Furthermore, rapid adoption of technologic advances have profoundly altered the ways in which many young adults communicate with decreasing use of home telephones, the U.S. Postal Service and newspapers and increasing reliance on the Internet. Loss-to-follow-up is higher in AYAs than in older age groups; currently approximately 15% of registry cases of these ages cannot be found annually by the passive follow-up methods. Inability to incorporate their survival time as a result of loss to follow-up may be part of the explanation for the lack of improvement survival rates of AYAs.
