Pediatric-Based Program

The AYA program at Seattle Children’s Hospital (SCH) was founded by Dr. Rebecca Johnson in 2007 with the goal of expanding supportive services and clinical research, creating dedicated patient care facilities, and educating the community about AYA oncology. Program development during the first 2 years addressed the most glaring unmet needs of AYAs treated in a pediatric hospital. Institutional approval was obtained to provide multidisciplinary cancer care for patients up to 29 years of age at diagnosis, an “ideal state” model was developed for outpatient clinic flow (Figure 1), and an institution wide standard practice was created to ensure that all newly diagnosed male AYAs are offered sperm banking before the start of cancer therapy, which increased sperm banking attempts from 7% to 70% in the first year.²⁴ A set of 10 concise educational handouts were written specifically targeting AYA patients with newly diagnosed cancer rather than their parents.²⁵ The program team at SCH worked to transform the institutional culture to focus on the needs of AYAs by lecturing to nurses, physicians, nurse practitioners, and fellows, both in hematology/oncology and in many other divisions and departments. The team reached out to the psychology, adolescent medicine, urology, gynecology, physical therapy, and child life departments and teachers in the school at SCH, and to medical oncologists, nurse practitioners, and psychologists focusing on adult cancers at the University of Washington. These lectures and discussions enhanced the visibility of AYA oncology and identified champions for AYA cancer care within each specialty, rounding out the program’s multidisciplinary team.

The team observed a serious lack of Internet video content on fertility preservation and the personal experiences of younger AYA patients with cancer. In response, the team created 2 sets of online videos that are now available on YouTube. One set focuses on AYA male²⁶ and female fertility preservation.²⁷ The second set of 12 videos, titled “Good Times and Bald Times,” offers a firsthand glimpse into the experiences of AYA patients battling cancer and its aftermath.²⁸ Unlike many videos on patients’ cancer experiences, this series is searchable by topic (eg, hair loss, chemotherapy, relationships).

During the next several years, the team continued to tackle unmet needs and expand programming and infrastructure. The team now includes a medical director (Dr. Johnson), a clinical nurse specialist, a psychologist, a gynecologist embedded into the hematology/oncology clinic, a PhD researcher, and an AYA child life specialist, as well as AYA-focused nurses and ancillary staff supporting both patient care and research. An AYA patient advisory board reports on patient experiences and offers feedback on proposed projects. Supportive services aim to get patients out of bed to exercise, focus on life, and interact with other AYA patients. The program lends iPads, stationary bikes, yoga mats, pedometers, and interactive computer games that emphasize fitness. The team hosts weekly evening pizza and discussion sessions on the inpatient unit and supports an artist-in-residence focusing on AYAs with cancer. The program partners with numerous nonprofit organizations to promote and sponsor a variety of AYA-focused inpatient and outpatient activities, support groups, retreats, and camps; hosts a biennial patient education day; and YAC (Young Adult Cancer) Fest, Northwest” (www.yacfest.com) to boost awareness of the activities and services available in the geographic area.

The AYA research projects have been clinically focused, informing program development. The program has addressed unanswered questions regarding how to optimize medical and psychosocial services, and how to harness new communication technology in caring for AYAs with cancer. A patient assessment tool was created to stimulate age-appropriate discussion with providers and inform appropriate multidisciplinary referrals. The team has studied fertility preservation, the use of tablet computers to collect patient-reported outcome data from AYAs, and epidemiologic trends in AYA cancer incidence.^24,29,30 Ongoing studies address medication adherence, symptom reporting, emotional resilience, and spirituality in AYAs.

The team has emphasized community outreach to raise awareness of AYA cancer, speaking at local and regional community events for the general public and educational seminars for medical professionals. This work has led to rapid transformation of the program from a concept on paper into a national leader in AYA oncology research and clinical care. In early 2013, SCH opened a dedicated 16-bed inpatient AYA oncology unit comprising one-third of all oncology beds. AYAs at SCH now receive state-of-the-art medical and psychosocial care in age-appropriate facilities, delivered by a coordinated team of specialized staff.

View Full Size

Seattle Children’s Hospital ideal clinic flow model for adolescent and young adult (AYA) patients. Proactive institutional outreach improves regional awareness among referring physicians and the general public that AYAs with cancer may benefit from specialized services. At the time of initial referral, the institution should have a coordinated system through which newly diagnosed AYAs are triaged to the most appropriate care team within either pediatric or adult oncology services.

Courtesy of Dr. Rebecca Johnson.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 12, 10; 10.6004/jnccn.2014.0138

Ongoing challenges include promoting appropriate referral patterns, overcoming the barrier of physical separation between pediatric and adult facilities, optimizing the use of the AYA patient assessment tool, and coordinating robust multidisciplinary service delivery within the existing clinic structure.

Medical Oncology-Based Program

Dr. Damon Reed works primarily at Moffitt Cancer Center (MCC), an adult NCCN Member Institution that does not routinely care for patients younger than 15 years. A senior physician, Dr. Douglas Letson, partnered with Dr. Reed to champion a proposal for organizing clinical services to meet the needs of AYA patients. The concept garnered widespread support from institutional leadership, clinical faculty, researchers, and nursing and social work staff and was supported by generous community donations. This level of support proved to be critical for the development of this program.

The team at MCC discovered that AYA patients aged 15 to 39 years constitute 12% of all new patients and total more than 2000 new patients per year; numbers that surprised and impressed the hospital administration. On a given day, MCC serves 100 to 150 AYA outpatients, and they occupy approximately 10% of inpatient beds. This number is relatively higher than the incidence of AYA cancer, suggesting that some AYA diagnoses require complex care that may generate revenue for the hospital.

The AYA program began within and was modeled on the MCC sarcoma clinic, a setting in which a significant percentage of patients are AYAs.^31,32 New AYA patients with sarcoma are seen within a week of appointment request, and the social worker, primary nurse, and pediatric oncologist evaluate the patient together. The process of assigning AYA patients to a pediatric oncologist was a local decision made by the chair; the model would also work well with a medical oncologist with AYA interests. The diagnosis is carefully explained, therapeutic options including clinical trials are presented, and risk to fertility is addressed. Patients interested in fertility preservation are seen by a nearby fertility clinic within 48 hours. For all new patients, scans, pathology, and the treatment plan are discussed at a biweekly multidisciplinary AYA tumor board or weekly sarcoma tumor board.

One of the team’s first tasks was to solicit feedback and ideas from AYA patients themselves. They conducted a focus group in which newly diagnosed, on-therapy, and posttherapy patients spoke openly with little structure. The clear theme was that cancer was a lonely experience; participants voiced the desire for more peer interaction during and after therapy. Patients also wanted to learn more about risk of infertility and other late effects, improving relationships with their caregivers, and transitioning back to normal life after cancer therapy.

Next, the team formed an AYA committee at MCC that meets monthly with the goal of developing a comprehensive program to address the medical, psychosocial, reproductive, educational, and survivorship needs of this population. Current programming incudes social and educational events, monthly gatherings for AYA patients along with a support group for patients (Meet Up) and a parallel one for caregivers (Connect Up), and weekly art therapy for inpatients. An AYA-specific packet outlining the available internal and external resources is also provided to new patients.

Research focuses on many aspects of AYA care. The team has established rich interdisciplinary collaborations throughout MCC and obtained philanthropic support for a variety of projects. Among active projects, the team is collaborating with researchers to (1) sequence a subset of rare sarcomas, (2) compare clinical and molecular data from young and older patients to understand why AYA patients with colorectal carcinoma have inferior outcomes, and (3) survey reproductive choices of women of childbearing age who are survivors of meningioma.

The team believes the AYA program has infused the culture of the cancer center. Hospital leaders are translating their increasing knowledge about AYAs into new clinical programs. All new clinical staff are oriented on AYA issues, yearly mandatory educational assessments are collected, and AYA topics are stressed during daily rounds.

Ongoing challenges include engaging patients to consistently attend events and interact with the staff. The program is enhancing its social media presence and creating a physical space for AYAs to improve its interface with patients.

Essential Elements of a Program

Based on experience in AYA program development and other organizations, including NCCN, Teenage Cancer Trust, the LIVESTRONG Young Adult Alliance, and Change it Back, the authors offer a synthesized conceptualization of the elements of an AYA program.^4,13,18,21 The elements described may inform the development of new clinical programs and clarify AYA programs as a care delivery concept. Table 1 suggests first steps for programs in the initial phases of starting an AYA program.

The goal of AYA clinical programs is to deliver family-centered care with the patient as the focus, modeling the strengths of pediatrics and medical oncology, respectively.³³ AYAs should have access to health care professionals with disease-specific expertise. Treatment should be provided with cure as the goal when possible, recognizing that AYAs can tolerate intensive therapy.^4,13,18 In addition to standard symptom management, age-appropriate supportive care for AYAs includes timely fertility counseling and referral, and counseling to address sexual dysfunction and the negative effects of treatment on body image.^4,17,34 Issues of substance use, contraception, and sexually transmitted infection prevention should also be addressed consistently.¹⁷ Providers should address adherence, which may be improved by good communication and a positive therapeutic alliance.^17,35 Treatment planning should always involve consideration of late effects, given AYAs’ longer life expectancy compared with older adults.^13,21

Psychosocial care should include comprehensive assessment at diagnosis, with ongoing monitoring through treatment and survivorship. Areas of inquiry include mood, coping, healthful behaviors, substance use, social support, and family, work, school, and home environment.^13,17,18 Developmentally appropriate psychosocial interventions should be available to AYAs based on the results of their assessments. Interventions may range from mental health referrals to support services, such as psychoeducational groups and vocational counseling. Information and advocacy about insurance and financial assistance are important to AYA care, as is patient education.^13,17,18 Educational materials should be developmentally appropriate in content and design, and address both medical and psychosocial topics. AYA patients should be the focus of the teaching, with active participation from the caregivers, family, and friends selected by the patient.³³ The influence of treatment setting and its potential to contribute to or detract from quality AYA care should not be underestimated. Clustering inpatient and outpatient care creates opportunities for patients to meet and interact.^17,18 Inpatient care is made AYA-friendly by making routines and visiting policies flexible and age-appropriate, minimizing time in the hospital, and creating clear ground rules for conduct on the unit. Providing Internet access and encouraging patients to personalize their hospital environment can add comfort to inpatient stays.¹⁷ Group activities and dedicated common space with developmentally appropriate décor, music, and games encourage patient interactions and minimize the isolation many AYAs experience.^18,22

Table 1

First Steps for A New AYA Program: Checklist of Practical Tasks

View Table

Outpatient care can be made AYA-specific by providing a common space for AYAs to gather, offering support groups for these patients, and hosting social activities. Groups and activities should be free of charge, include assistance with transportation and childcare, and allow survivors to bring a friend or sibling. Social networking is a necessary and useful tool in publicizing groups and activities.^13,17,18,22

AYA-specific care should be delivered by a multidisciplinary team with specialized skills.^18,22 Specific institutional approaches may vary based on local needs and available services.¹⁷ Table 2 lists the most common elements of an AYA multidisciplinary team in the United States according to a recent national survey (Rebecca Block, PhD, personal communication). A multidisciplinary team may include AYA-focused professionals and paraprofessionals, including physicians, nurses, and representatives from patient navigation (team coordinator or patient educator/navigator), educational/vocational support, genetic services, survivorship services, palliative care, and pastoral care, and administrative support. The team meets regularly to discuss AYAs treated at the institution, with each case considered from a broad range of viewpoints and potential interventions.^18,22

All AYA team members should be educated on the cognitive, psychiatric, and psychosocial needs of AYA patients. Compared with older adults, AYAs benefit from more time with health care professionals and staff, which is key to a strong therapeutic alliance.^17,34,35 AYAs may also require significant advocacy from providers, and encouragement to recognize limitations, care for themselves, and ask for help.^17,18 Staff must maintain confidentiality with patients and recognize that those older than 18 years can choose their caregivers. Countertransference and boundaries can be challenged in AYA care, because many staff are in the same age range as patients.¹⁷ Multiple resources exist for training and continuing education in AYA care, including the Nurse Oncology Education Program, “At the Crossroads: Cancer in Ages 15-39”³⁶ and the ASCO “Focus Under Forty” educational series for physicians.³⁷

Research especially toward successful interventions is essential within AYA programs given the inferior survival improvements and documented unmet psychosocial needs of this population.^4,16,38 Significant knowledge gaps exist within the areas of therapeutics, supportive care, outcomes, psychosocial adjustment, and basic research.⁴ Increasing clinical trial accrual is critical to improving AYA cancer survival.⁷ At one center, clinical focus on promoting enrollment on therapeutic trials significantly increased accrual.³⁹ Optimally, new therapeutic trials involving common AYA cancers should include the entire 15- to 39-year-old age spectrum.⁴⁰ New and ongoing quality-of-life studies that evaluate coping, care models, fertility/sexuality, education or career re-entry, advance care directives, and survivorship will enhance existing knowledge and improve AYA care worldwide. Basic science research explores topics such as how reported cancer incidence and/or outcome differences in AYAs relate to fundamental age-related differences in tumor biology.^{1,6-8,30,41-43}

Table 2

Most Common Elements of AYA Programs in the United States (N=20)

View Table

Community outreach focuses on increasing the visibility of the AYA program within the cancer center and the community, with the goals of sharing knowledge, raising funds for clinical programming and research, and increasing referrals. Outreach activities target oncologists, primary care providers, and the general community, and may include educational sessions to raise awareness of AYA issues, and social media outreach such as Facebook postings, tweets, and videos created by AYA patients and staff.⁴⁰

Conclusions

The number of specific programs for AYAs with cancer is increasing at a rapid rate throughout the United States. Previously offered at only a few major referral centers, AYA programs are now advertised by an increasing number of academic centers, community hospitals, and hospital systems. AYA patients constitute a significant volume of patients and thus represent a potential source of revenue for both pediatric and adult medical institutions. Research in AYA oncology bears excellent potential for funding from sources that emphasize interdisciplinary collaboration.⁴⁰ Clustering care for AYAs within designated programs adhering to nationally accepted standards will result in improved medical and psychosocial outcomes for this important population.