Abstract
A
The field of cancer medicine has always believed that the future improvements in cancer delivery and cancer outcomes will be achieved only by the rigorous use of clinical trials. No improvement can occur without research, especially in the fields of clinical therapeutics, prevention, biobehavior, and diagnostics, as well as into the palliative and quality of life aspects of cancer care in the adolescent and young adult (AYA) patient population. The lack of research studies—particularly therapeutic clinical trials—being made available to AYAs is an ongoing concern.
We at JAYAO believe absolutely that to make progress in the field we need investigators to encourage the adolescent and young adult cancer patients and their caregivers, families, and healthcare staff to participate in the research enterprise so that important questions in their disciplines are answered. We need new strategies so that a research participant is no longer considered a “guinea pig,” a disparaging colloquial comment that often reflects passive and negative implications for prospective participants.
This issue of JAYAO has three articles that highlight some of the issues that may influence AYAs' participation in clinical research. Finding in the article “A Qualitative Study of Phase III Cancer Clinical Trial Enrollment Decision-Making: Perspectives from Adolescents, Young Adults, Caregivers, and Providers,” by Lamia Barakat and her colleagues from the Children's Hospital of Philadelphia, highlight how the AYA patient population needs to be more fully involved in Phase III clinical trials enrollment decision-making, and that our caregivers and providers need to consider mechanisms to overcome the issues and the challenges faced by investigators in discussing clinical trials with the AYA age group. 1
Many in our field believe that if there was a centralized and concentrated clinical expertise in AYAO that issues related to poor clinical trial participation would be reduced. Rebecca Birch and colleagues from Leeds in the United Kingdom, in their article entitled “Geographical Factors Affecting the Admission of Teenagers and Young Adults to Age-Specialist Inpatient Cancer Care in England,” highlight the important issue of geography as a factor that can be demonstrated to affect the admission of teenagers and young adults to AYAO age-specialist centers. 2 Their findings that 66.9% percent of patients aged 15–24 at diagnosis never received inpatient care at age-specialist center during their treatment was surprising and concerning, especially in light of the tremendous progress being made in the United Kingdom with the strategy to concentrate expertise. The goal to increase clinical trial participation must therefore take into account the issues of geography and clinical team's expertise in clinical research in any discussions of improving trial participation. All countries that consider improving outcomes for the AYAO population have geographic issues and—when added to the reality of the rarity of the cancer patients and cancer subtypes that we see and treat—it suggests that we need to consider new strategies to improve research literacy and delivery for our patients and for healthcare providers and funding agencies.
In their article “Attitudes Toward Cancer Clinical Trial Participation in Young Adults with a History of Cancer and a Healthy College Student Sample: A Preliminary Investigation,” Timothy Grigsby and his United States colleagues examined attitudes toward clinical trial participation in young adults who were survivors of leukemia and lymphoma and compared them to healthy college students. 3 The study disappointingly revealed that only 13.3% of participants in the cancer survivor group reported being offered participation in a clinical trial and that only 7.6% of those participated. These results should serve as a catalyst to explore how the drivers of attitudes can be better researched so that interventions that lead to improved clinical trial participation can be instituted.
Since the advent of modern oncology with the 1948 publication of Dr. Sidney Farber and colleagues' development of the first drug to treat children with acute lymphoblastic leukemia 4 up until today, all advances in clinical oncology occurred because patients participated in clinical trials. In pediatrics, both the Children's Oncology Group in the United States and the recent publication from the United Kingdom by Laura Fern and Jeremy Whelan have shown that approximately 60% of pediatric patients are enrolled in clinical trials, 5 and this percentage of enrollment can even be higher if an important clinical trial in a particular disease is open. However, these numbers fall dramatically when evaluating the number of patients enrolled to adolescent and young adult clinical trials in the United States and worldwide, 6 and this reflects general findings in the adult medicine, where at least in the United States, only 3% of eligible patients are enrolled in clinical trials. 7 This has been the topic of numerous papers, conventions, conferences, white papers, and directives as the engagement of patients in clinical trials is so necessary.
In today's AYA cancer world, we need to rethink how we engage our patients as we develop the tools to encourage participation in clinical trials. AYAs' involvement in social media websites such as Facebook is well known, and their use of social media is now regarded as commonplace and expected. Today we can consider our AYA patients as “digitally born” and therefore need to consider what that means in our engagement attempts.
I believe we need to reinvent the language of research and acknowledge that today's AYA would like to be considered as part of a two-way dialogue. Just as the internet has have moved from Web 1.0, in which websites pushed information in only one direction, to today's internet Web 2.0, in which a dialogue exists to improve the conversation, we need a two-way dialogue and partnership in the research enterprise.
I suggest that we acknowledge that researcher and participant are in fact co-researchers and that clinician-scientists can no longer conduct research on their own. The patient research participants are now just as important and no longer passive “subjects.” They need to be engaged, can provide information as their own data analysts, and can contribute to the goal of the research studies. They should be heard when designing the research protocol and acknowledged as part of a research team.
It is my belief that by developing a common language and a common benefit, we all become engaged, not just as participants or academic researchers, but as “research activists.” We have an opportunity to change the findings that were presented in this issue of JAYAO. I have coined this the “Activist Research” campaign, which involves all cancer researchers, clinicians, academics, and patients. Everyone in the research team should proudly wear a button that says, “Ask me about my research,” whether you are the researcher or the participant. I encourage all to join the Society for Adolescent and Young Adult Oncology (SAYAO) as we roll out the campaign during the coming year. Please email me at
In the previous JAYAO issue, I discussed the 2013 Society for Adolescent and Young Adult Oncology Conference and the pending online release of the meeting's presentations, and am now happy to invite you to review the amazing presentations on the meeting's website, sayao2013.com I encourage all of JAYAO's readers, authors, and reviewers to visit the website, and please save October 8–9, 2014 for the Second Annual SAYAO Conference, which is starting to take shape as an even more informative and exciting conference in the field of AYA cancer research. The theme of the 2014 conference will be “Activist Research” as the campaign will be rolled out there. Please watch sayao2014.com for future updates about the SAYAO conference.