So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research
Young cancer patients are often left partially or completely infertile by the treatments that save their lives. The field of oncofertility—a discipline that studies ways to assess and offset infertility caused by cancer and its treatment—has emerged to try to help these young men and women.
But to investigate possible solutions, researchers must find patients willing to take part in clinical trials, a difficult task with this age group. To that end, researchers are learning how to better connect with and enroll young patients in studies to improve the ability of future cancer survivors to have children.
Fertility preservation is of special concern for adolescent and young adult (AYA) cancer patients, a group that historically has been underrepresented in clinical research studies. According to Dr. Leonard Sender, editor-in-chief of the Journal of Adolescent and Young Adult Oncology, researchers affiliated with the NIH-funded Oncofertility Consortium (OC) have taken innovative approaches to reach out to adolescent cancer patients and their parents, as well as to young adult patients.
One example is OC’s Fertility Information Research Study (FIRST), an observational registry for young female cancer survivors. “We’re doing FIRST because we don’t have a lot of good information on reproductive outcomes in AYA survivors, and female survivors in particular,” said principal investigator Dr. H. Irene Su, assistant professor of reproductive medicine at the University of California, San Diego.
Dr. Su recalled the initial difficulties that she and her colleagues faced in recruiting for the study. “It’s hard to find AYA patients. We encountered all the issues and barriers other investigators have with reaching these patients,” including physicians’ failure to talk about fertility issues with patients and the high mobility of this group of patients.
Reaching Out through Social Media…
The breakthrough came when Dr. Su and her colleagues capitalized on relationships that OC Director Dr. Teresa Woodruff and her staff at Northwestern University have with several AYA patient advocacy groups, such as Stupid Cancer and Imerman Angels.
“After the initial posting about FIRST on Stupid Cancer’s Facebook page in late 2011, we got 15 calls,” Dr. Su said. After a few months and repeated postings by those organizations, FIRST now has almost 200 participants. “We believe that two-thirds of those came through some sort of social networking site for AYAs,” she said.
When Jackie Blachman-Forshay was diagnosed with thyroid cancer at age 20, she was not told how her treatment might affect her fertility. She later heard about FIRST on Twitter and enrolled in the study. “Once you’re involved in the young adult cancer community, everyone is really well connected,” she noted. “One person posts or tweets something, and pretty quickly everyone knows about it.”
It's difficult to recruit these patients because you're catching them at a very delicate point.
Blachman-Forshay, who is studying for a career in epidemiology research, said she is participating in FIRST because she hopes data about her fertility will be used to create recommendations for clinical practice or to inform doctors how to provide more and better information to AYA cancer patients about fertility preservation.
…and More Traditional Networks
OC researchers have also leveraged the influence of national clinical networks to advance fertility research projects. They created the National Physicians Cooperative (NPC), a network of about 60 fertility clinics across the country, to provide access to human ovarian tissue and a collaborative forum for the exchange of ideas, clinical research methods, and technologies. The network hopes to drive breakthroughs in basic reproductive physiology that will be translated directly to clinical medicine.
In the past year, the creation of the NPC has begun to pay off. Investigators have seen an uptick in enrollment for a study of ovarian tissue cryopreservation, particularly by young women and girls who are unable or unwilling to undergo the standard process of stimulating and harvesting mature eggs for freezing, which can take 2 to 5 weeks to complete before cancer treatment can begin.
The study was launched about 5 years ago in conjunction with the formation of the NPC, according to Dr. Kate Timmerman, OC program director. With a funding grant, the NPC infrastructure is now well established and gaining momentum. As a result, in just the last 12 months, the investigators have nearly doubled the amount of ovarian tissue in their collection and enrolled nearly 50 patients, for a total of 120 patients, she added.
Making Participation Easier
Dr. Woodruff, professor of obstetrics and gynecology at the Northwestern University Feinberg School of Medicine, also credited patient navigators’ knowledge about fertility preservation with helping newly diagnosed young cancer patients, who are often overwhelmed and anxious, to learn about the potential impact of their treatments and the options available, including clinical research studies.
Kristin Smith, a fertility patient navigator at Northwestern, said, “It’s difficult to recruit these patients because you’re catching them at a very delicate point. For young adults to be coming into the cancer center, that by itself is scary. Then I start talking to them about, ‘Oh, and by the way, your fertility could be destroyed from all this.’ It’s just way too much for a lot of patients to think about participating in a research study at that time.”
Smith finds ways to make research studies “a little more accessible” to rattled patients by combining participation with other scheduled visits. For example, cancer patients can complete a survey for a study on the impact of stress levels on in vitro fertilization (IVF) outcomes during their mandatory visit with Northwestern’s reproductive endocrinologist, she said.
Dr. Clarisa Gracia, associate professor of obstetrics and gynecology at the Hospital of the University of Pennsylvania, uses a similar “piggyback” approach in recruiting for OC’s ovarian tissue cryopreservation study. “Typically, what works best is adding a study procedure to a needed procedure that’s already scheduled,” she noted.
For example, cancer patients typically get central lines inserted to administer fluids and drugs, and for blood tests. “They’re [already] in the operating room, and that can really make ovarian tissue extraction much more palatable to patients and reduce the risks,” Dr. Gracia said.
Jonny Imerman, founder of Imerman Angels, said he and many other AYA survivors are drawn to give back to the cancer community in appreciation for those who participated in past research studies. He noted that the standard treatments used successfully against his testicular cancer in 2001 were developed decades before. “Someone was on that clinical trial for my treatment protocol, and [their participation] saved my life because the treatment worked,” he said.
As more young patients and survivors enroll in these fertility studies, researchers hope that their efforts will one day mean that more survivors can look forward to starting a family of their own.