Developing a Health-Related Quality of Life Instrument for Adolescents Who Are Pursuing Fertility Preservation
Site: Moffitt Cancer Center and University of Florida
Principal Investigators: Caprice Knapp, PhD; Gwen Quinn, PhD
This study seeks to identify the fertility-related concerns of female adolescent cancer patients who have completed or are about to complete treatment.
- To develop a Health Related Quality of Life (HRQOL) survey instrument for adolescents aged 12-18 who have been diagnosed with cancer.
- To conduct cognitive debriefing and determine if the items related to reproduction are appropriate and well understood by subjects.
Indices of Scholarship
- Review the literature and identify potential instruments that may be used to measure health related quality of life and reproductive concerns.
- Pilot test the reproductive concerns questions through interviews with daughter-parent paris in two age groups: 12-14 and 15-18. Eligible daughters include all female cancer patients who are either on or off treatment but healthy enough to participate as assessed by their oncologist. These interviews will assess clarity, sensitivity, and accuracy of the reproductive concerns items.
- Pilot test the reproductive concerns questions through four focus groups, two with girls between the ages of 12-14 and two with girls between the ages of 15-18. These focus groups will help identify acceptable language and content related to fertility discussions.
- Produce a guidebook to accompany the instrument based on interviews that have been completed thus far.
- Distribute a prompting tool for fertility preservation discussions such as a stress-ball in the shape of an egg.
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.