Women's Health Initiative (WHI) - Life and Longevity After Cancer (LILAC) (WHI-LILAC-BioLINCC)

Data Access NOTE: Please refer to the "Authorized Access" section below for information about how access to the data from this accession differs from many other dbGaP accessions. Objectives: The LILAC substudy was initiated to collect information on cancer treatment and long-term outcomes in women diagnosed with eight selected cancers during their participation in WHI.Background: Improvements in early detection and treatment have led to a surge in the number of cancer survivors in the United States creating a demand for a better understanding of their health concerns. Cancer survivor health concerns are diverse and complex due to the heterogeneity among individuals, cancer type, and treatment variability. To effectively examine these concerns, new resources need to be developed, including a much more comprehensive assessment on a large sample with longer-term follow-up than is typically available in cancer clinical trials. The WHI cohort, which is a large study with long-term follow-up, continues to be a good resource to study issues related to aging and health. The LILAC substudy was initiated with WHI participants who had been diagnosed with cancer to examine cancer survivorship among older women.Participants: Participants with no cancer (other than non-melanoma skin cancer) prior to enrollment in WHI and a confirmed invasive cancer diagnosis during WHI follow-up of one of the eight selected cancers were eligible for LILAC.A total of 9934 WHI participants living with cancer were eligible. Of those, 7751 consented and returned the baseline survey. This included 821 participants with melanoma, 781 participants with colorectal cancer, 648 participants with endometrial cancer, 397 participants with lung cancer, 4173 participants with breast cancer, 442 participants with non-Hodgkin lymphoma, 181 participants with leukemia, and 208 participants with EOC (which includes ovarian, fallopian tube and primary peritoneal cancers). Design: Participants still in active WHI follow-up who were eligible for the LILAC substudy were sent an invitational mailing that included a baseline survey. Baseline surveys collected data on initial cancer treatment, symptoms after treatment completion, and quality of life. WHI participants who consented to the LILAC substudy were subsequently sent annual surveys. Annual surveys collected any updates on treatment, as well as other topics related to cancer survivorship such as social support. Additional treatment information was obtained from Medicare claims and medical records.Conclusions: The LILAC substudy provides a resource for studying cancer survivorship among older women diagnosed with eight selected cancers.]]>