Abstract
BackgroundLoss 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).MethodsThe 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.ResultsFifty-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.ConclusionsThe 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12905-014-0149-y) contains supplementary material, which is available to authorized users.
Highlights
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
We developed a computer assisted telephone interview (CATI) to collect detailed health information from female cancer survivors who were at least 2 years post diagnosis, but still of reproductive age (22– 45 years), as well as comparison women of the same age who have never been diagnosed with cancer
Summary
Loss of fertility has been reported as an important concern of reproductive age women diagnosed with cancer. One of the challenges of studying survivorship issues among young adult cancer survivors is that the population is heterogeneous with respect to the types of cancers they experience, the treatments they receive, as well as sociocultural factors such as insurance status and familial. To study such a diverse population, self-reported information in the form of questionnaires is critical to further these needed research initiatives. We describe the challenges faced and lessons learned while piloting a computer-assisted telephone interview (CATI) for a population-based study of women’s health in survivors of young adult cancers
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