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Centralizing Care for Adolescents and Young Adults With Cancer to Improve Long-Term Survivorship

A Conversation With William D. Tap, MD, FASCO


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This past fall, Memorial Sloan Kettering (MSK) Cancer Center in New York expanded its adolescent and young adult (AYA) program with the establishment of the Lisa and Scott Stuart Center for Adolescent and Young Adult Cancers. The Stuart Center is now part of the increasing list of about 50 academic and community cancer centers across the country to incorporate a dedicated AYA program into their facility to address the unmet physical, psychosocial, and financial needs of this growing—and underserved—patient population. According to the National Cancer Institute, this year nearly 90,000 adolescents and young adults—defined as those between the ages of 15 and 39—will be diagnosed with cancer, and over 9,000 will die of the disease.1

MSK’s newly launched Stuart Center brings together experts across pediatric and adult specialties to improve outcomes and quality of life for AYA patients, including through expanded access to clinical trials, family planning and fertility specialists, and personalized medicine. To attract more young patients to the Stuart Center and ensure that their unique care needs are met, MSK is utilizing protected social media platforms and apps to connect patients with members of their medical team and other young survivors.

The Stuart Center was launched during a time when the incidence in young-onset colorectal cancer is on the rise in adolescents and young adults—the rate of colorectal cancer has been increasing 1% to 3% annually for people younger than 50 while decreasing in older individuals2—and expands MSK’s focus on the disease with its Center for Young Onset Colorectal and Gastrointestinal Cancer. Breast cancer—the most common cancer of adolescents and young adults, accounting for 5.6% of all invasive breast cancer in women3—is also garnering extensive clinical care attention and research efforts at the new center. Improving outcomes for patients with other common cancers diagnosed in AYAs (eg, sarcomas, lymphomas, leukemias, central nervous system tumors, and cervical, melanoma, testicular, and thyroid malignancies) through the development of more clinical trials, as well as addressing the unique challenges these patients face will also be a primary focus of the center’s work.

William D. Tap, MD, FASCO

William D. Tap, MD, FASCO

“Our overall goal is to figure out how to provide holistic and longitudinal care for our patients,” said William D. Tap, MD, FASCO, Chief of the Sarcoma Medical Oncology Service at Memorial Sloan Kettering Cancer Center and Co-Director (with Julia Glade Bender, MD, Vice Chair for Clinical Research in MSK’s Department of Pediatrics) of the Lisa and Scott Stuart Center for Adolescent and Young Adult Cancers. “We aim to understand the unique biopsychosocial needs that AYAs who develop cancer have, from the minute we meet them in our clinic and throughout their care, so we can support them and improve their outcome and lifelong well-being. Our goal is not to take patients away from their primary oncology team, but to provide the added information, support, and resources that AYAs need throughout their care continuum.”

In a wide-ranging interview with The ASCO Post, Dr. Tap discussed how the Stuart Center plans to increase adolescent and young adult participation in clinical trials to improve survival outcomes in this vulnerable patient population, as well as their long-term quality of life.

Defining the Care Needs of AYA Patients

Progress in outcomes for AYAs with cancer still lags behind that in pediatric and older adult survivors. The reasons for the discrepancy include the unique genetic and biologic features of AYA malignancies, lack of standardized therapeutic approaches, poor therapy compliance, lack of access to health insurance and health care, and race and ethnicity.4 How will the Stuart Center overcome these challenges, especially in the area of health equity?

One of our greatest challenges is to define exactly what the care needs are for AYAs, compared with those of pediatric and older adult patients. We are developing a patient-reported outcomes system to evaluate, monitor, and better understand the physical, mental, financial, and social health of AYAs; we will then use the information to create models of care to better inform and improve their experiences and outcomes.

For example, we want to learn the various stressors AYAs experience as a result of their cancer diagnosis and our proposed treatment plans. This could include the physical, logistical, psychosocial, or financial implications of their diagnosis, which may hinder their ability to receive conventional treatment and participate in clinical trials, and/or create lifelong stressors as they adjust to their cancer diagnosis and cope with the uncertainty and impact of their illness. We want to develop solutions to help prevent or mitigate the impact of these challenges.

This is one of the first steps in providing equitable care for AYA patients. In addition, we need to address many of the societal disparities that are inherent in health care. ASCO’s Health Equity Committee is doing wonderful work in this area and is a tremendous resource for us.

To truly understand the myriad facets of AYA care, we must partner with other organizations, institutions, and programs dedicated to this age group. For example, we are excited to collaborate with the Young Adult Program at Dana-Farber Cancer Institute and its AYA specialists to determine the viability of different models of care. Together, we are in the process of developing an AYA working group and local consortium to tackle the many issues AYA patients experience.

Improving Survivorship for Young-Onset Colorectal Cancer

The incidence of young-onset colorectal cancer has increased by 22% between 2000 and 2013 for people younger than 50.5 A recent study by Dana-Farber Cancer Institute finds that although younger patients with metastatic colorectal cancer are usually more fit and receive more intensive therapy than older adults with the disease, survival rates are similar.6 Will the Stuart Center focus more attention on young-onset colorectal cancer?

We actually have an amazing Center for Young Onset Colorectal and Gastrointestinal Cancer that is headed by Andrea Cercek, MD. She has developed a pioneering program that has served as a model for the Stuart Center and provided us with an opportunity to collaborate and learn from each other.

Similarly, we are joining forces with MSK’s Young Women With Breast Cancer program, co-directed by Shari Goldfarb, MD, and Mary Gemignani, MD, to learn about the unique needs of women 45 and younger with breast cancer. Having these partnerships both internally and with other adolescent and young adult programs across the country is critical, so we can share practice paradigms and discuss care patterns, resources, and data to inform patient care.

Increasing AYA Participation in Clinical Trials

It is well established that clinical trial enrollment is lower in this patient population than it is for pediatric patients with cancer. Please talk about clinical trials you are planning on launching and how you plan to increase AYA participation in these trials.

We are exploring a few strategies. First, we are examining all of the logistical aspects that may explain clinical trial accrual patterns of AYA patients at our institution, to help us identify and eliminate some of the biopsychosocial and logistical barriers that prevent AYAs from benefiting from clinical research and trials. We have the institutional commitment and the multidisciplinary teams in place to improve participation. We just need to better understand the barriers preventing enrollment. 

Second, we are evaluating clinical trial procedures across pediatric and internal medicine to ensure that our processes align and that our research is accessible to all patients. 

Third, we are developing trials in diseases that are specific to the AYA patient population—for example, in desmoplastic small round cell tumor, a rare type of sarcoma, which generally affects patients aged 18 to 21. We are also partnering with other cancer institutions in their clinical trial efforts, not only to collaboratively develop the trials and participate in the impactful work they are doing, but to collectively advocate for drug development opportunities for our AYA patients as well.

At the Stuart Center, we are looking at ways to reach our patients through social media. For example, we are building community forums and creating novel apps so AYA patients can join a community of their peers, communicate with each other, and receive accurate information about the various facets of oncologic and supportive care, including clinical trials.

Fourth, we are examining whether we have the right educational tools in place and whether we need to augment education for our staff about the unique needs of AYAs, including how to discuss clinical research and trials, supportive care, and the long-term sequelae of treatment.

Among other barriers to clinical trial participation for adolescents and young adults, the time commitments of clinical trials can be substantial and increase the financial toxicity inherent in all aspects of health care, including cancer care. The complexity of trials can contribute to lost wages and work opportunities and increase out-of-pocket costs for child care, transportation, and lodging. This can have lifelong financial implications for AYA survivors. We have to address the financial stressors of being sick in our society, not just for young patients, but for all patients.

Transitioning From Active Care to Long-Term Survivorship

How will the Stuart Center aim to improve long-term survivorship in AYA patients?

This is such a critical question, since our ultimate goal is not only to help our patients live longer, but to achieve a high quality of life in survivorship as well, which is the concept of holistic and longitudinal care. Our objective is to create a more comprehensive care envelope around our patients, to anticipate and prevent or alleviate the physical, psychosocial, and financial concerns patients have as they arise—and to mitigate their long-term impact if possible—so all survivors experience a high quality of life for the rest of their lives.

We have a very strong survivorship program at MSK and expect that the data we collect from our AYA patient-reported outcomes surveys will allow us to offer precision survivorship care based on patients’ specific cancer and treatment, as well as other factors, such as the physical and mental health issues they may have as a result of their cancer and its treatment.

One area we are concentrating on and trying to internally define is the concept of transitional care—those in-between periods along the continuum of care that may introduce stress, uncertainty, or gaps in care. For example, we are focusing on transitioning from active care to survivorship or end-of-life care. Understanding how these transitions impact patients’ lives—both on macro and micro levels—will help us develop care paradigms to ensure patients receive the highest quality of care and attention throughout their treatment and long-term survivorship. 

DISCLOSURE: Dr. Tap reported no conflicts of interest. 

REFERENCES

1. National Cancer Institute: Cancer Stat Facts: Cancer Among Adolescents and Young Adults (Ages 15–39). Available at https://seer.cancer.gov/statfacts/html/aya.html. Accesed January 31, 2022.

2. Siegel RL, Miller KD, Fedewa SA, et al: Colorectal cancer statistics. CA Cancer J Clin 67:177-193, 2017.

3. Johnson RH, Anders CK, Litton JK, et al: Breast cancer in adolescents and young adults. Pediatr Blood Cancer 65:e27397, 2018.

4. Miller KD, Fidler-Benaoudia M, Keegan TH, et al: Cancer statistics for adolescents and young adults, 2020. CA Cancer J Clin 70:443-459, 2020.

5. Dana-Farber Cancer Institute: Survival similar for younger and older patients with metastatic colorectal cancer, study finds. Available at www.newswise.com/articles/survival-similar-for-younger-and-older-patients-with-metastatic-colorectal-cancer-study-finds. Accessed January 31, 2022.

6. Lipsyc-Sharf M, Zhang S, Ou FS, et al: Survival in young-onset metastatic colorectal cancer: Findings from Cancer and Leukemia Group B (Alliance)/SWOG 80405. J Natl Cancer Inst. October 12, 2021 (early release online).


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