Site:  Northwestern University

Principal Investigators: Paul Arntson, PhD; Marla Clayman, MPH, PhD; and Kathleen Galvin, PhD

Overview

This project explores how families facing a child's cancer diagnosis decide whether or not to pursue fertility preservation treatments and the role that others, such as health care practitioners and religious counselors, play in this decision. The overall aim of this research is to gain a nuanced understanding of how families facing a child's medical crisis communicate to make health care decisions and to develop a shared decision-making model that will facilitate informed choice in the clinical setting.

Objectives

  • Understand how families, patients, and health care providers make “informed choices” about fertility preservation options when a young woman has been diagnosed with cancer.
  • Construct a functional shared decision-making model for families, patients, and health care providers to use in making informed choices about fertility issues for young women diagnosed with cancer.
  • Develop, utilize, and evaluate multiple formats of a shared decision-making model for families, patients, and health care providers that can be used in the clinical setting to help them make informed choices about fertility preservation options before cancer treatment.

Indices of Scholarship 

  • Conduct in-depth interviews with parents of young women and girls diagnosed with cancer when they were a minor to learn about what they knew regarding the potential effects of cancer treatment on fertility and how they arrived at decisions regarding fertility preservation options. These interviews will also explore who they turned to for advice and information, how they determined what they needed to know in order to make a decision, how their values were incorporated into a decision, and how they weighted information received in arriving at a decision.  Depending on the age of the patient and parental consent, interviews will also be conducted with daughters.
  • Conduct interviews with a representative group of health care providers to assess how they share information regarding cancer and fertility that aid in shaping the decision-making process
  • Develop and pilot test a model of shared decision-making where informed choice is the goal.  Once the model has been tested, design multiple formats (print, CD-ROM, interactive Web site) of this model to be used as decision aids in family education programs and as practical aids in the clinical setting.

Consortium Support and Impact

This project draws on other parts of the Oncofertility Consortium in developing a social science inquiry that is informed by scientific innovation and insight.  It relies on clinical and medical perspectives and advances and application of oncofertility technology (see Follice Cryopreservation, Bioengineering Primate Follicles, and Human Follicle Maturation In Vitro) to develop surveys, focus group guidelines, and interviews while serving as an integrated link to interdisciplinary biomedical research in ovarian follicle harvesting, cryopreservation, maturation, and fertilization.  Insights regarding the psychosocial impact of infertility on the lives of cancer patients and their families will be applied to the training, education, and advocacy mission of the Consortium.

This research was supported by the Oncofertility Consortium®, funded by the National Institutes of Health through the NIH Roadmap for Medical Research, Grant UL1DE19587 and RL1HD058296.