Editor’s note: This article was adapted from a paper submitted toward fulfillment of the requirements of Fellowship in the American College of Medical Practice Executives. Learn more about ACMPE certification: mgma.com/acmpe.
Each year, approximately 70,000 adolescents and young adults between the ages of 15 and 39 (commonly referred to as AYAs) are diagnosed with cancer, yet historically few programs have been developed to address their unique clinical, social and emotional needs.1
AYAs represent a scant 6% of all patients with new cancer diagnoses2 yet are eight times more likely to be diagnosed than children who are in their first 15 years of life.3 Cancer is a leading factor of death among this age group when excluding homicide, suicide and unintentional injury.4 With these factors taken into consideration, for females, it remains the single most common cause of death; in males, it is second only to heart disease.5
In recent years, there has been greater attention paid to this unique population of patients based on the reported suboptimal outcomes compared to other age groups.6 The growing urgency to understand the overarching characteristics of this population and how, through programmatic development and collaboration, their unique needs can be met in an academic medical center’s model of care is a challenge to which healthcare administrators should rise.
AYA oncology: A brief history
Childhood cancer became a focus of research and clinical practice in the early 1950s, with adults added as a priority in 1971 after the passage of the National Cancer Act; the prognosis of AYAs in those early years was on par with and often surpassed their pediatric and older adult counterparts.7 However, survival rates have since declined.8
It is important to note that the types of cancer vary considerably within this age range, with the younger group being more afflicted with lymphomas, germ cell tumors and leukemia.9 These cancers decline between the ages of 20 and 39, when breast, cervical and colon cancer tend to be more prevalent. It is, therefore, not the diagnosis or disease that binds this population together; rather, it is their unique characteristics.
Unique characteristics of the AYA population
Although the AYA population includes different stages of life, they are characterized largely by transition.10 Generally speaking, unlike younger (pediatric) and older (middle age to geriatric) oncology patients, the AYA population can be at various stages of education, employment, sexual identity/practices and personal relationships. Their life goals are often put at risk due to the diagnosis, adding to their emotional and psychological stress.11
Generally, AYAs tend to view themselves as irrepressible, or, at the very least, unsusceptible to a life-threatening illness or injury, thus they will tend to ignore symptoms or dismiss them as something that “will pass.”12
Occupying a space somewhere between childhood and adulthood, AYAs are at a decided disadvantage because they often do not have an adequate “medical home” intended to address their clinical, emotional and social needs.
Similarities, differences within the AYA cohort
AYAs in the younger echelon (ages 15-21) often seek to exert their sense of autonomy, while still maintaining dependence on their family unit.13 The older subgroup tends to be more focused on education, career development, marriage and children.14 Physical changes due to treatment, however, isolate AYAs from their peers (including hair loss, weight changes, scarring, etc.) and fear that their body will never return to its original state serves to compound their insecurities.15
The risk of receiving suboptimal care is also a concern for this population. As previously noted, there often is a delay in diagnosis, which frequently is due to low suspicion of cancer in this age group.16 Selection or availability of care setting is also a factor. Pediatric centers are better designed to treat young patients who are under parental control, while medical oncologists routinely treat older adults who are independent.17 Community health centers are often both familiar and convenient for patients, yet practitioners in this setting don’t always have access to the latest clinical trials and subspecialties that might be available in an alternative, less convenient setting (e.g., academic). Barriers to finding the ideal treatment center add to the stress of an already underserved and undervalued patient population.18
Psychosocial needs
Psychosocial issues among AYAs are awakened with a cancer diagnosis, with many of these needs remaining unmet for a variety of reasons.19 The common challenges faced by AYAs during this life period include developing a sense of personal identity, navigating changes in their bodies, and life-altering decisions relating to pursuing their formal education, all of which are amplified with an oncologic diagnosis.20 Coping with the general developmental stages in this time of life, including body image, sexuality, personal and professional goals, marriage and/or possibly parenthood, among others, are further complicated by a cancer diagnosis.21 Studies show that some AYAs have experienced difficulty in developing new relationships, while others reported challenges with maintaining existing friendships after diagnosis.22
Additionally, some AYAs reported being woefully unprepared to deal with the emotional, social and physical challenges that are inevitable with a cancer diagnosis23 and further note that it disrupts the already complex multitude of life changes during this time.24
Fear, a common result of the anxiety, angst and stress accompanied by a cancer diagnosis in AYAs, complicates matters even further, and their “distorted body image” during a critical period of developing their sexual identity serves to amplify the effect.25 Kent et al. (2013) point out that social isolation after diagnoses increases sensitivity to everyday stressors and can lead to negative outcomes.26
Insurance
AYAs have historically had among the highest rates of uninsured or underinsured individuals.27 Studies show that patients with health insurance have better outcomes, while those without tend to present with more advanced disease due to lack of early intervention and treatment.28 Although some improvements have been noted since the inception of the Affordable Care Act, this indicator significantly affects their access to primary healthcare services.29 The resulting delay in diagnosis remains a factor as to why outcomes for the AYA cancer patients have lagged behind their older and younger counterparts.30
Clinical trial enrollment
A principal result of improved outcomes for the general oncology patient population is related to their enrollment in clinical trials.31 Research specifically demonstrates this for AYAs with cancer.32 Whereas enrollment of children under the age of 14 is estimated to be approximately 70%, this percentage drops significantly in patients ages 15 to 19 with a 24% enrollment rate and a negligible rate of <2% for patients in the 20- to 30-year age range.33 Patients treated in a community health center setting often do not have access to clinical trials due to multiple factors, including, but not limited to, geographic location and a lack of resources required to enable data collection for research studies.34 It is the conclusion of Baweja, et al. (2017) that improved clinical trial enrollments will lead to a better understanding of the disease in this population, ideally rendering improved outcomes.
Fertility preservation
All patients, regardless of age or diagnosis, have a right to understand complications and treatment effects relating to their disease. Of the 70,000 new diagnoses among the AYA population each year, many are at risk of infertility due to treatment regimens.35 To that end, it is important for healthcare providers to advise their patients as early as possible of their risk for infertility.36 This is particularly true of AYAs, according to Oktay, et al. (2018), as they are considered to be of “child-bearing” age. Surveys show that fewer than 50% of physicians practicing in the United States inform their patients about fertility preservation, as “having to give a patient a cancer diagnosis is hard enough.”37 Oktay, et al. (2018) note, however, that such discussions can reduce stress and facilitate a greater quality of life, as the patient is informed of choices at this critical stage.
Fertility preservation for oncology patients is often not covered by insurance and can be prohibitively expensive, particularly for younger patients, with access to such resources varying by geographic location.38 Whereas a cancer diagnosis does not prohibit a family from choosing adoption, a prospective parent must be in “generally good health” and cancer free for at least “a few years.”39 Sometimes, it is the only parenting option for cancer survivors, and with the overarching uncertainty with regard to adoption policies, it can cause additional angst.40
Building an AYA program: Making the case for change
An ever-evolving and rapidly changing healthcare environment provides a great challenge to healthcare administrators. Health and payment reform, leadership competencies, emerging payment models, population health management and community/partner engagement are among the many issues facing leaders today. Determining where to expend limited resources to meet the demands of the population adds another dimension to existing challenges.
Advocating for change
Strategically preparing for change has become a primary competency among healthcare leaders.41 With issues such as health reform, corporate mergers and “disruptors” entering the healthcare market (such as Amazon and Apple), administrators must position themselves for growth and market differentiation. By investing in research and development for a niche population (as exemplified at Cleveland Clinic and MD Anderson, among others), healthcare administrators can position their organization as a market expert — the organization to seek out for a primary or second opinion or as a final option for patients when others have been exhausted.42
Despite compelling evidence to support the development of a program focused on the adolescent and young adult with a cancer diagnosis, few medical centers have adopted a comprehensive, focused model of care. Healthcare organizations — whether private, academic or community-based — are faced with multiple initiatives and priorities, all requiring a plethora of skills. A key skill in this regard is advocating for and leading through transformational change.
AYAs, health disparities and cultural competence
Emerging priorities in the population health realm include “addressing health disparities” and “cultural competence” with different racial and ethnic groups. Similarly, the AYA population has experienced disparities and a lack of culturally competent care. This is evidenced by their suboptimal outcomes compared with their older and younger counterparts. From understanding their unique life perspectives to discussing fertility preservation, AYAs have largely been left to fend for themselves. Bentencourt, et al. (2005) note that increasing competencies in this regard are necessary to address consumerism, reduce disparities and provide all patients — regardless of age, race or gender — with access to the highest quality of care. Thus, a well-developed AYA program can address not only ethnic and racial disparities, but also the unique needs of the “generation,” improving outcomes, patient engagement and satisfaction.
Making the case
A healthcare administrator’s role in developing a program designed to focus on the AYA population can be likened to improving patient satisfaction or developing an innovative model for a facile check-in process. However, focusing on this “lost generation” will provide a unique opportunity for academic medical administrators to achieve the Triple Aim: improving the patient experience of care, improving the health of a vulnerable population and reducing the overall cost of care through increased focus, resulting in better outcomes and value.
Addressing challenges
There are inherent challenges in developing an AYA program, as the age group spans the pediatric and medical (adult) oncology sectors.
In the pediatric setting, care is most routinely provided based on standard clinical protocols with a higher proportion of required resources including, but not limited to, teachers, social workers, nutritionists43 and sometimes even art and music therapists. There is a triad approach — parent, patient, oncologist — with a system of care designed to be supportive and interactive.44
Medical (adult) oncology programs are designed to treat older patients who are independent and prepared to determine their own course.45 When compared with the more comprehensive pediatric model, the adult patient is often treated in a community center where care is more fragmented, with patients often being referred to specialists only as an acute need arises.46
An AYA patient falls in the realm between pediatric and medical oncology, not fitting neatly into either setting of care.47 As one survivor pointed out, in the pediatric setting, “Dora the Explorer” was featured in the waiting room; in the adult center, she was offered AARP The Magazine.48 This is congruent with one of the major concerns expressed by AYA patients — having their own physical space (e.g., waiting room, inpatient lounge, etc.).49
According to Ferrari, et al. (2010), the first step is defining the ideal model and then charting barriers to making the change. In smaller academic settings, a “virtual base” approach to care might be necessary (defining a referral process to specialists outside the system), whereas in larger settings, a multi-disciplinary team may be available more locally.50 A physician champion is a requisite resource. Barr (2016) also notes that close collaboration between pediatric and adult centers is essential to success for transitions of care — whether live or virtual. Engaging a team of AYA patients will provide great insight into their needs. Reconfiguring an existing space may serve as a great first step in making the AYA population feel more included and valued.
Finally, advocacy and engagement at a global level is a key to success in making progress toward improving care for this very distinct population.51 There are several organizations — nationally and internationally — that are making great strides and providing exceptional resources (both financial and educational) for developing a comprehensive care model. It is, therefore, possible to develop a strong case for a targeted and well-defined approach to this unique and distinct population without exhausting extensive resources.
A program with well-designed programmatic and evidence-based clinical initiatives that will engage and appeal to this generation of cancer patients is essential to achieving optimal outcomes. By utilizing existing resources, leadership competencies, advocacy skills, physician collaboration and engagement, healthcare administrators in the academic setting have a unique opportunity to lead the way in developing a model of care that can positively affect a currently lost generation of patients, improving their potential for survivorship and enhancing quality of life for years to come.
Notes:
1. Shaw P, Reed D, Yeager N, Zebrack B, Castellino S, Bleyer A. “Adolescent and young adult (AYA) oncology: a specialty in its late adolescence.” Journal of Pediatric Oncology, April 2015, 37(3), 161-169.
2. National Cancer Institute and Livestrong Alliance. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. 2006. Washington, D.C.: National Institutes of Health NIH Publication No. 06-6067.
3. Docherty S, Kayle M, Maslow G, Santacroce S. “The adolescent and young adult with cancer: a developmental life course perspective.” Seminars in Oncology Nursing, August 2015, 31(3), 186-196.
4. NCI and Livestrong.
5. Ibid.
6. Docherty, et al.
7. Keegan T, Ries L, Barr R, Geiger A, Vollmer-Dahlke D, Pollock B, Bleyer W. Comparison of cancer survival trends in the united states of adolescents and young adults with those in children and older adults. 2016. National Cancer Institute, Washington, D.C.
8. Docherty, et al.
9. NCI and Livestrong.
10. Docherty, et al.
11. NCI and Livestrong.
12. Quinn GP, Goncalves V, Sehovic I, Bowman ML, Reed D. “Quality of life in adolescent and young adult cancer patients: a systematic review of the literature.” Patient Related Outcome Measures, 6, 19-51.
13. Quinn, et al.
14. NCI and Livestrong.
15. Ramphal R, Aubin S, Czaykowski P, DePauw S, Johnson A, McKillop S … Rogerson P. (2016). “Adolescent and young adult cancer: Principles of care.” Current Oncology, 23(3), 204-209.
16. Ibid.
17. Ferrari A, Thomas D, Franklin AR, Hayes-Lattin B, Mascarin M, van der Graaf W, & Albritton K. (2010). “Starting an adolescent and young adult program: some success stories and some obstacles to overcome.” Journal of Clinical Oncology, 28(32), 4850-4857. Available from: bit.ly/2mk5QRH.
18. Ibid.
19. Ramphal, et al.
20. Barr R, Ferrari A, Ries L, Whelan J, Bleyer A. “Cancer in adolescents and young adults: a narrative review of the current states and a view of the future.” Journal of American Medicine Pediatrics, 170(5), 495-501. Available from: bit.ly/2kPePdj.
21. Rosenberg A, Wolfe J. “Palliative care for adolescents and young adults with cancer.” Cancer, 117(10 Suppl), 2323-2328. doi:10.1002/cncr.26044.
22. Ramphal, et al.
23. Kent E, Wilder Smith A, Keegan T, Lynch C, Xiao-Cheng W, Hamilton A, … Group AH. “Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer.” Journal of Adolescent and Young Adult Oncology, 2(2), 44-52. Available from: bit.ly/2kOFdUv.
24. Barr, et al.
25. Ramphal, et al.
26. Kent, et al.
27. Shaw, et al.
28. Keegan, et al.
29. Shaw, et al.
30. NCI and Livestrong.
31. Ramphal, et al.
32. Baweja, A, Schiller G, Bergman J, Litwin M, Goldman J, Davies S, Casillas J. “Clinical trial enrollment of adolescent and young adult patients with cancer: a systematic review of the literature and proposed solutions.” Clinical Oncology in Adolescents and Young Adults, 51-59. doi:10.2147/COAYA.S70375.
33. Weiss A, Hayes-Lattin B, Kutny M, Stock W, Stegenga K, Freyer D. “Inclusion of adolescents and young adults in cancer clinical trials.” Seminars in Oncology Nursing, August 2015, 31(3), 197-205.
34. NCI and Livestrong.
35. Gorman A. Preserving fertility when it is threatened by life-saving medicine. 2017. San Francisco, CA: Henry J. Kaiser Family Foundation. Available from: bit.ly/2ldCB2X.
36. Oktay K, Harvey B, Partridge A, Quinn G, Reinecke J, Taylor H, … Loren A. “Fertility preservation in patients with cancer: ASCO clinical practice guideline update.” Journal of Clinical Oncology, 36(19), 1994-2003. doi:10.1200/JCO.2018.78.1914.
37. Gorman.
38. Ibid.
39. Benedict C, Thom B, Friedman D, Diotallevi D, Pottenger E, Raghunathan N, Kelvin J. “Young adult female cancer survivors’ unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation.” Cancer, 122(13), 2101-2109. doi: 10.1002/cncr.29917.
40. Gardino S, Russell A, Woodruff T. “Adoption after cancer: adoption agency attitudes and perspectives on the potential to parent post-cancer.” Oncofertility, 156, 1-17.
41. Kash B, Spaulding A, Johnson C, Gamm L. “Success factors for strategic change initiatives: a qualitative study of healthcare administrators’ perspectives.” Journal of Healthcare Management, Jan-Feb. 2014, 59(1), 65-81.
42. Gamble M. “7 strategies for health systems to distinguish themselves.” Becker’s Hospital Review, Feb. 4, 2015. Available from: bit.ly/2mTiffM.
43. Ferrari, et al., 2010.
44. Ibid.
45. Ibid.
46. Ibid.
47. Institute of Medicine. Identifying and address the needs of adolescents and young adults with cancer: a workshop summary. 2013. The National Academies Press. Washington, D.C.
48. Ibid.
49. Ferrari, et al., 2010.
50. Barr, et al., 2016.
51. Ibid.
Explore Related Content
More Insight Articles
