Development of the Fertility and Cancer Project: an Internet approach to help young cancer survivors

Abstract

Purpose/objectives: To describe the development of the Fertility and Cancer Project (FCP), an Internet approach to supplement information about fertility; describe FCP study participants' characteristics, fertility, cancer knowledge, and Internet use; and assess perceived information and support from the oncology team.

Design: Descriptive.

Setting: Internet, international.

Sample: 106 young survivors of breast cancer from eight countries.

Methods: FCP content was developed from the literature and interviews with breast cancer survivors, oncology professionals, and young women without cancer who were having fertility problems. Participants learned about the FCP through advocacy groups, cancer care providers, and Web searches. After enrollment, they completed five surveys: sociodemographic, breast cancer and health status, knowledge of fertility, Internet use, and the Medical Outcomes Study-Social Support Survey.

Main research variables: Sociodemographics, breast cancer, health status, fertility knowledge, Internet use, and social support.

Findings: Prior to diagnosis, most survivors had no fertility concerns, but more than 14% reported fertility problems. Following breast cancer diagnosis and treatment, 23 reported fertility problems. About half reported receiving little information about fertility options from the oncology team and were referred to a reproductive endocrinologist. Internet use to obtain support and health information was common. Most reported frequent computer use and Internet access in their homes. Participants were most knowledgeable of the general and treatment-related factors that could affect fertility; they were least knowledgeable of infertility treatment.

Conclusions: Results provide preliminary evidence about the demographic, cancer treatment, and support characteristics of young survivors of breast cancer who seek online information about fertility.

Implications for nursing: The Internet is a promising format for engaging young cancer survivors who seek information about fertility and cancer. Future studies can evaluate FCP effectiveness in delivering education and support interventions.