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Young adults with cancer may be a lost generation
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When I was a Med/Peds resident in Boston, I was lucky enough to meet Karen Albritton, a national expert in the emerging field of adolescent and young adult (AYA) oncology. I hadn’t thought much about a career in oncology until I grew deeply attached to working with pediatric and adult cancer patients. Through Dr. Albritton I found a way to match my clinical passion with my training in pediatrics and internal medicine.
The crux of the national argument in favor of increasing focus on cancer patients aged between 16 and 39 years (the definition of AYA according to the current Progress Review Group) has been that, relative to younger and older patients, this group represents a “lost generation” in cancer care. Although outcomes have improved during the past 30 years for younger and older patients, the rate of improvement for this in-between group has lagged behind.
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There are many possible explanations for this. One area attracting significant recent attention has been the disparate outcomes of adolescents enrolled on pediatric vs. adult ALL protocols. An interesting and unsettling finding published in the September issue of Blood by Stock et al is that patients aged 16 to 20 years enrolled on CCG (pediatric) ALL trials from 1988 to 2001 had a seven-year OS of 67% and event-free survival of 63%, and patients aged 16 to 20 years enrolled on CALGB (adult) ALL trials during the same period had a seven-year OS of 46% and event-free survival of 34%. Intriguingly, CALGB patients aged 16 to 17 years had a similar seven-year event-free survival (55%) to CCG patients, but CALGB patients aged 18 to 20 years had an event-free survival of only 29%. Could the differences between pediatric and adult protocols, and the differences between the care of patients aged 16 to 17 years vs. those aged 18 to 20 years really account for such marked survival differences?
I have come to believe that the field of AYA oncology represents a special opportunity to gain insight into and to work with themes that will become more and more important in all of oncology in the years ahead. As I see them, these themes include but are not limited to:
Practice variation. The AYA experience illustrates that practice varies widely from one setting to another (such as between pediatric oncology and adult oncology) and that we can learn important lessons from looking outside our provincial areas of expertise. We may be able to apply this insight when looking at how a given drug is used differently by different disease experts or when examining how care is delivered outside of clinical trials in different academic or community settings.
Continuous quality improvement. The incremental improvement in outcomes of pediatric patients with ALL stands as a testament to the power and potential of quality improvement. Carefully designed and incrementally improved protocols, standardization when possible of all facets of care delivery and low tolerance of system errors have allowed for dramatic improvements in ALL outcomes despite a relative paucity of new drugs in this disease area during the past many years. Current adult cooperative group trials are looking to see if AYAs can benefit from these insights with “pediatric-like” ALL treatment.
Insurance and sociodemographic factors. AYAs are among the most vulnerable populations in this regard, as many are changing schools, jobs, homes and either gaining or losing insurance coverage along the way. Many have not been in the workforce for long and may have limited financial resources and young families to care for. In finding ways to deliver expensive medications and complicated care to this community, we will begin to address challenges that are increasingly facing the larger population.
Internet-based technology. The use of electronic health records is slowly spreading throughout physician offices, but AYA patients are also increasingly using the internet to communicate in ways that affect (and usually enhance) cancer care. This can include e-mail communication with physicians, personal blogs and true personal health records. These trends will become more popular in oncology, and indeed all of medicine, and the current epicenter of use is in the AYA population.
Consumerism. We are recognizing that the patient experience should be at the front and center of cancer care and our AYA patients will increasingly look for this to be the case. More than critical adverse events and toxicities, we will need to look for and monitor subtle physical and psychological (positive as well as negative) adaptations and changes during care. Stronger performance in this area will lead to stronger patient rapport and more effective care delivery.
Advocacy and networking. AYAs have found a champion in Lance Armstrong and social networking or shared community has become an important part of the AYA cancer experience. What’s more, though obviously cancer isn’t “cool,” it is a mark of pride, whether as a patient or a supporter, to be part of this community. This is evidenced by the yellow wristbands, fundraising bike races and marathons, etc. There is overlap here with the survivorship community, which one could argue has its philosophical home in the AYA population because many of the survivorship community’s childhood cancer graduates are now AYAs. Getting important messages out to AYAs and survivors will be more effective when capitalizing on the communication channels offered by these social networks.
Bill Wood, MD, is a second year Hematology/Oncology Fellow at the University of North Carolina, Chapel Hill and is a HemOnc Today Editorial Board member.