Site:  Northwestern University

Principal Investigators: Linda Emanuel, MD, PhD; Maxwell Vergo, MD; Lynne Wagner, PhD

Overview

Our immediate goal is to provide a foundation to understand processing and decision making in new cancer patients when a single immediate decision about oncofertility must be made. Our long terms goals include improving the quality of cancer survivorship through appropriately supported patient-centered care decisions and reassessing how informed consent can be most valid, in light of how human processing occurs.  

Objectives

  • To establish a feasible method to collect qualitative and quantitative data in real time, focusing on cognition, affect, and behavior relevant to oncofertility decisions made after the diagnosis of a new cancer.
  • To examine processes of psychological adjustment and influences on a fertility preservation decision occurring in the context of a new cancer diagnosis.
  • To accumulate evidence on the validity of two related conceptual models of adjustment to serious life changes such as receiving a cancer diagnosis

Indices of Scholarship 

  • Conduct initial interviews and train patients in completing quantitative and qualitative assessments.
  • Ensure that participants complete of daily logs and voice recordings of qualitative and quantitative probes. The daily assessment will include a brief narrative description of losses that occurred or decisions that were made in the previous 24 hours.
  • Conduct descriptive analyses of compliance rates, accural rate, and satisfaction and examine predictors of compliance according to clinical and socioeconomic variables.
  • Characterize processes of psychological adjustment to losses.

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.