The aim of R01D is to advance scholarship at the interface of social and biomedical sciences that will promote and extend our ability to move emerging oncofertility technology from the bench to the bedside. Specifically, to comprehensively examine cancer patients'concerns regarding fertility and how patients, along with their families and physicians, make fertility-related healthcare decisions and to understand the social, legal, and ethical factors that surround those decisions at the time of cancer diagnosis. The proposed research agenda consists of five empirical projects and promotes a triad-model of healthcare decisionmaking whereby the roles of patients, family members (including parents and partners), and healthcare providers will be examined. Moreover, the proposed research agenda utilizes a triangulated methodological approach whereby qualitative and quantitative projects will explore the lived experience of infertility and cancer and will include survey instruments, in-depth interviews, and focus groups;and several projects will integrate mixed methodological approaches within their respective research plan. Project #1, under the direction of Dr. Linda Emanuel, Dr. Laurie Zoloth, and Prof. Dorothy Roberts, will look at the ethical and legal issues surrounding the use of reproductive technologies for cancer patients, with a special emphasis on the implications for pediatric patients and their families. Project #2, under the leadership of Dr. David Dranove, Dr. Andrew Sfekas, and Dr. Charles Bennett, is an economics analysis of how young adult women with cancer weigh the costs and benefits of possible infertility and fertility preservation treatments. Project #3, under the direction of Dr. Kathleen Galvin, Dr. Paul Arnston, and Dr. Maria Chapman, will explore how families facing a child's cancer diagnosis decide whether or not to participate in the ovarian cryopreservation clinical trial and the role that others, such as healthcare practitioners and religious counsel, play in this decision.
The aim of this research is to understand how families facing a child's medical crisis make healthcare decisions and to develop a shared decision-making model aimed at informed choice. Project #4, under the direction of Dr. Karrie Snyder, will explore how adult women with breast cancer share their concerns regarding infertility with their physician, how they arrive at treatment decisions, and the impact of possible infertility on their lives and relationships after cancer, with special attention being paid to issues of racial/ethnic and socioeconomic diversity in patient's concerns and survivorship experiences. Project #5, under the direction of Prof. Matthew J. Loscalzo, will be a large-scale survey of cancer patients'concerns and treatment decisions and a comparison of these by key social characteristics including gender, race/ethnicity, socioeconomic status/and family status.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Linked Research project Grant (RL1)
Project #
5RL1HD058296-03
Application #
7649500
Study Section
Special Emphasis Panel (ZRR1-SRC (99))
Program Officer
King, Rosalind B
Project Start
2007-09-30
Project End
2012-06-30
Budget Start
2009-07-01
Budget End
2010-06-30
Support Year
3
Fiscal Year
2009
Total Cost
$344,567
Indirect Cost
Name
Northwestern University at Chicago
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
005436803
City
Chicago
State
IL
Country
United States
Zip Code
60611
Snyder, Karrie Ann; Tate, Alexandra Lee (2013) What to do now? How women with breast cancer make fertility preservation decisions. J Fam Plann Reprod Health Care 39:172-8
Quinn, Gwendolyn P; Murphy, Devin; Wang, Hua et al. (2013) Having cancer does not change wanting a baby: healthy adolescent girls' perceptions of cancer-related infertility. J Adolesc Health 52:164-9
Rodriguez, Sarah B; Campo-Engelstein, Lisa; Clayman, Marla L et al. (2013) Pathways toward the future: points to consider for oncofertility oversight. J Cancer Surviv 7:140-5
Woodruff, Teresa K (2013) From the bench to bedside to babies: translational medicine made possible by funding multidisciplinary team science. J Assist Reprod Genet 30:1249-53
Quinn, Gwendolyn P; Stearsman, Daniel K; Campo-Engelstein, Lisa et al. (2012) Preserving the right to future children: an ethical case analysis. Am J Bioeth 12:38-43
Rodriguez, Sarah B; Campo-Engelstein, Lisa (2011) Conceiving wholeness: women, motherhood, and ovarian transplantation, 1902 and 2004. Perspect Biol Med 54:409-16
Snyder, Karrie Ann; Pearse, William (2011) Discussing fertility preservation options with patients with cancer. JAMA 306:202-3
Campo-Engelstein, Lisa (2011) Gametes or organs? How should we legally classify ovaries used for transplantation in the USA? J Med Ethics 37:166-70
Quinn, Gwendolyn P; Murphy, Devin; Knapp, Caprice et al. (2011) Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature. J Adolesc Health 49:337-46
Gardino, Shauna; Rodriguez, Sarah; Campo-Engelstein, Lisa (2011) Infertility, cancer, and changing gender norms. J Cancer Surviv 5:152-7

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