The Women's Health Initiative (WHI) Life and Longevity After Cancer (LILAC) Study: Description and Baseline Characteristics of Participants

Abstract

The Women's Health Initiative (WHI) Life and Longevity After Cancer (LILAC) study offers an important opportunity to advance cancer research by extending the original WHI studies to examine survivorship in women diagnosed with cancer during their participation in WHI. The goals of LILAC are to (i) obtain cancer treatment information and long-term cancer outcomes for women diagnosed with one of eight selected cancers (breast, endometrial, ovarian, lung, and colorectal cancers, and melanoma, lymphoma, and leukemia); (ii) augment the existing WHI biorepository with fixed tumor tissue from the solid tumor sites for cancers diagnosed since 2002; and (iii) develop, refine, and validate methods to use administrative data to capture treatment and recurrence data. Methods for accomplishing these goals are described, as are results from the initial LILAC participant survey. A total of 9,934 WHI participants living with cancer were eligible for LILAC participation, of which 78% ( = 7,760) agreed to participate. Among the three most prevalent cancer types, 54% are breast cancer survivors, 11% are melanoma survivors, and 10% are survivors of colorectal cancer. In addition to describing this resource, we present pertinent lessons that may assist other investigators interested in embedding survivorship research into existing large epidemiologic cohorts. The LILAC resource offers a valuable opportunity for researchers to study cancer survivorship and issues pertinent to cancer survivors in future studies. .

Prediagnosis social support, social integration, living status, and colorectal cancer mortality in postmenopausal women from the women's health initiative

“…Age at diagnosis and disease severity (stage, grade, site) were assessed at the time of CRC diagnosis. Treatment data (surgery, radiotherapy, and chemotherapy), collected through the Life and Longevity After Cancer (LILAC) study of women from the WHI diagnosed with cancer, used Medicare data in women who were diagnosed at ages ≥65 years, medical records in those who died before the LILAC study, and a combination of medical records and self‐reported data in those living participants with CRC . Treatment data were available for 67.5% of women in the study population.…”

Fear of recurrence among older breast, ovarian, endometrial, and colorectal cancer survivors: Findings from the WHI LILAC study

“…One of the specific goals of the WHI LILAC study was to obtain cancer treatment information and late and long-term cancer outcomes for women diagnosed with 1 of 8 selected cancers (breast, endometrial, ovarian, lung, and colorectal cancers, melanoma, lymphoma, and leukemia). 16 The ultimate goal was to expand the existing WHI data to support studies of cancer outcomes, participant survivorship, and molecular epidemiology. LILAC participants were asked to complete an initial survey about their initial cancer treatments and recurrences, as well as updated demographic information, medications, symptoms, social support, financial problems, mental and physical functioning, quality of life, and unmet needs.…”

Financial burden among older, long‐term cancer survivors: Results from the LILAC study

“…24 The LILAC cancer survivorship cohort was designed with three study objectives: (a) to collect treatment and outcomes information from women diagnosed with cancer during their participation in WHI; (b) to supplement the WHI biorepository with tissue samples from select solid tumors; and (c) to test the ability of electronic administrative data to produce reliable treatment and recurrence data. 21 A total of 30 306 women were diagnosed with incident cancers after enrolling in WHI. Of those, 9934 were invited to participate in LILAC after excluding women with cancers other than those selected financial burden.…”