Comparison of Young Adult Female Cancer Survivors Recruited from a Population-Based Cancer Registry to Eligible Survivors.

BACKGROUND: Population-based cancer registries provide a resource to recruit young adult cancer survivors who may not be easily identified otherwise. METHODS: We compared demographic and cancer-related characteristics of participants in a cohort of female young adult cancer survivors to those of eligible survivors in the Georgia Cancer Registry, a population-based registry in the United States. We examined associations between survivor characteristics and nonparticipation using logistic regression and associations between survivor characteristics and different types of nonparticipation (refusal, unable to contact, or unresolved vs. interviewed) using polytomous regression. RESULTS: The Georgia Cancer Registry was able to contact 60% of eligible women (3,061/5,137). Of those, 78% agreed to study contact (n = 2,378), and of those, 56% were interviewed (n = 1,342). Participation was similar across age at contact and at diagnosis but varied across cancer type from 17% for cervical cancer to 32% for breast cancer. White women were slightly more likely to be interviewed (28%) than African American women (23%), which was mostly attributable to greater difficulty in contacting African American women (odds ratio 1.7, 95% confidence interval: 1.5-2.1). CONCLUSIONS: The greatest challenge to recruiting women was contacting them, which differed across some but not all demographic and cancer-related characteristics. When successfully contacted, most survivors agreed to participate. IMPACT: Population-based cancer registries can serve as an invaluable resource to recruit representative samples of young adult cancer survivors, who are otherwise difficult to identify.

Piloting a computer assisted telephone interview: the FUCHSIA Women's Study.

BACKGROUND: Loss of fertility has been reported as an important concern of reproductive age women diagnosed with cancer. The Furthering Understanding of Cancer, Health, and Survivorship In Adult (FUCHSIA) Women's Study examines how cancer treatment affects the fertility of cancer survivors who were diagnosed during their reproductive years. In this paper we discuss the process of developing and pilot testing the FUCHSIA computer assisted telephone interview (CATI). METHODS: The CATI was developed in several phases and pilot tested twice to evaluate several aspects of the instrument including question sequencing, understandability of the questions, and women's comfort with certain questions. Participants were recruited from cancer and infertility support groups and study team contacts. RESULTS: Fifty-two women were recruited and participated in the first pilot. The participants had a mean age of 31.5 years, 17.3% had cancer, and 38.5% experienced a period of infertility. Twenty-four women participated in the second pilot with similar representation. CONCLUSIONS: The collection of detailed information on reproductive outcomes with the CATI may improve the understanding of how cancer treatment during the reproductive years affects female fertility. The pilot studies provided important information to improve the CATI before the full study. Our comprehensive recruitment strategy allowed us to interview a diverse group of women to ensure that questions and answer choices were easily interpreted, check complicated skip patterns and the flow of questions, and evaluate the length of the interview. This experience can be used to help inform others in what steps can be useful for developing telephone interviews for research studies.