The National Cancer Institute estimated that in 2020, 89,500 adolescent and young adult (AYA) patients (aged 15 to 39 years) would be diagnosed with cancer.

Receiving a cancer diagnosis at any age is troubling, but for the AYA population, the impact of cancer differs from that of pediatric and elderly patients. Oncology nurses can help meet the needs of their AYA patients by learning about their concerns and answering questions that may otherwise go unasked.

Donna Bell, MSN, RN, FNP-C, is a nurse practitioner at The University of Texas MD Anderson Cancer Center’s AYA program. The program, which was launched in 2019, provides a wide range of services designed specifically for adolescent and young adult patients with cancer. 

® spoke with Bell about the important role oncology nurses have when caring for the AYA patient.

“Cancer pulls AYA patients out of their peer groups and subsequently is very isolating,” Bell stated. “Expressing authentic compassion for what they are going through and asking meaningful questions makes it easier for them to talk about issues that matter. Nurses are well suited for these types of interactions.”

Bell offered some suggestions about the questions they might ask: “How are things going at work? What did you do this weekend? Who is your community? Are you having any sexual troubles?” AYAs often worry how cancer and cancer treatment will affect their independence, education, career, and fertility.

Questions related to these areas steer the conversation, guide interventions, and align appropriate referrals. Bell recommends that nurses be familiar with common concerns among AYA patients. “Employ a holistic approach. Look at the whole patient and not just the cancer treatment,” she said.

Patients may be concerned about the effects of cancer or cancer treatment on their ability to have children. Some may not have given the subject any consideration. Conversations about fertility and fertility preservation should be offered to all patients in this age group. These conversations are important and should address risk related to treatment and availability of options such as banking sperm or freezing oocytes.

Nurses can also be instrumental in helping AYA patients construct hope through goal setting, pathways thinking (routes for goal achievement), and overcoming barriers. A resiliency plan for meeting challenges can reduce anxiety and frustration. Hope-based interventions, virtual programming, and virtual support/activity groups have shown promise in improving quality of life, mental and physical health, coping skills, and pain tolerance.

Another area to address with AYA patients is educational/vocational planning. Referral to a vocational counselor can help patients plan their career trajectory around length of treatment, identify areas of flexibility, and perhaps recommend a change in course. “The disruptive nature of cancer can be an opportunity for growth,” Bell said. “Some young people are spurred to reevaluate their choices and in doing so, discover an interest they had not previously considered, such as a career in nursing or medicine.” The MD Anderson AYA Program website offers information and resources on these and other topics for patients and professionals.

By taking the time to understand the unique needs of the adolescent and young adult population, nurses can provide assurance to patients that their life matters, their needs matter, and they are not alone.

1. Cancer stat facts: Cancer among adolescents and young adults (AYAs) (Ages 15-39). National Cancer Institute. Accessed December 13, 2020. 

https://seer.cancer.gov/statfacts/html/aya.html

2. Nicoll I, Lockwood G, Chan RJ, Grundy P, Fitch MI. et al. What do adolescents and young adults perceive is the main challenge during the transition to survivorship? 

2020;30(4):309-313. Accessed December 13, 2020.

3. MD Anderson Cancer Center. Adolescent and Young Adult Program website. 

Adolescent and Young Adult Program | MD Anderson Cancer Center

Articles

Nurses can create an open dialogue for AYA patients to discuss cancer-related issues. 

Adolescent and Young Adult Patients Face Unique Needs, Challenges

A nationwide nursing shortage is not only reducing the amount of time oncology nurses have to spend with their patients, but also increasing the risk for burnout and compassion fatigue.

 With the need for cancer care projected to outpace the supply of practitioners by 2025, nurses should use their time efficiently and take measures to avoid burnout.

Nurses at Kaiser Permanente in San Francisco, California took on this problem when they tackled staff inefficiencies in the infusion center by reconfiguring assignments and shift start times. They assigned each nurse to 3 chairs, located together, thereby creating teams in adjacent areas to simplify medication checks and break coverage. In addition, they staggered shift start times by 30 minutes, providing nurses with needed prep time.

Survey results collected after the pilot run (45 shifts) and presented at the 44th Annual Oncology Nursing Society (ONS) Congress showed that nursing satisfaction with patient location, ability to see patients, handoffs to colleagues, and prep time skyrocketed.

 Overall patient satisfaction also improved. The results were impressive enough that plans were made to implement the new workflow throughout the rest of the clinic.

Reducing patient wait times was a project goal set by nurses at the Adult Infusion and Medical Clinic at UF Health, in Gainesville, Florida.

 They recognized that communication problems were delaying treatment start times due to unsigned, incomplete, or unclear orders. Electronic health record dashboard reports and secure messaging were used along with interdisciplinary education, intervention meetings, and communication cards, to reduce patient treatment delays by an average of 6.5 minutes. This quality improvement measure also increased communication within the team. By making a few meaningful changes, the nurses realized a significant difference in workflow and improved satisfaction for patients and staff alike. With less time available for patients, and growing demand for cancer care services, nurses may find themselves suffering from emotional exhaustion, compassion fatigue, or burnout. Victoria Reiser, BSN, RN, ONC, and Judy Zedreck, DNP, MPM, NEA-BC, work at the University of Pittsburgh where they developed personalized self-care toolkits for combating compassion fatigue among nurses at 2 oncology units in the teaching hospital.

The toolkits were rarely used, so they sought to uncover barriers to self-care through focus group discussions based on 4 main themes: leadership, work schedule, acuity and staffing, and personal barriers. They presented the results of their project at the ONS Congress in 2019.5 “Nurses are always putting their patients first,” Reiser shared in a recent interview with 

. “They know what compassion fatigue is, and they know what they are doing that puts them at risk, but they really want to be there. They want to take care of their patients.” Reiser says she believes that nurses need self-care to not take them away from the bedside. Rather, that care needs to be built into daily practice, beginning with orientation. “We need to teach nurses to nurture their young nurses and show them what those nurturing habits are.”

Zedrech, who is program coordinator for the university’s Doctor of Nursing Practice Health Systems Executive Leadership Program, agrees and urges administrators and leaders not to assume they know what nurses need. “Whether it’s another nurse, an aide, equipment, or other things, nurses want validation from leadership that the work they do is important, but they have to communicate on the same plane.” She sees burnout not so much as a by-product of the work or the intensity of the job, but of nurses not having the tools they need to do the work they love.

Still, there are ways to help nurses avoid fatigue and burnout. First, return to the basics. Make sure nurses are taking their breaks, especially for meals. Encourage coworkers to talk to each other about their stress and with leadership about solutions. Help staff integrate self-care habits into their work day instead of making it another task to complete. Schedule breaks and make time off the unit part of daily practice. Recruit informal leaders as role models of self-care. The solution does not have to be groundbreaking.

When it comes to fatigue, nurses don’t want to complain. They want to be there for their patients who are suffering and struggling. Reiser shared that “compassion satisfaction is stronger than compassion fatigue. Nurses love this job, and they stay because they derive a lot of satisfaction from caring for these patients.” Zedreck concurred, adding that “people stay when times are rough—when they trust leadership is doing the best they can do.”

1. Toh SG, Ang E, Devi MK. Systematic review on the relationship between the nursing shortage and job satisfaction, stress and burnout levels among nurses in oncology/haematology settings. 

. 2012;10(2):126-141. doi: 10.1111/j.1744-1609.2012.00271.x.

2. Chandak AN, Loberiza FR Jr, Deras M, Armitage JO, Vose JM, Stimpson JP. Estimating the state-level supply of cancer care providers: preparing to meet workforce needs in the wake of health care reform. 

. 2015;11(1):32-37. doi: 10.1200/JOP.2014.001565.

3. Beringer K, Jansen C, Tejada M, Wong A. Improved nursing infusion workflows, including chair assignment grouping, increase nurse and patient satisfaction. Presented at: ONS 44th Annual Conference; April 11-14, 2019; Anaheim, CA.

4. Pesata B, Farrar R, Harris L. Improving speed, efficiency, and communication of medical oncology patients receiving infusion treatments. Presented at ONS 44th Annual Conference; April 11-14, 2019; Anaheim, California.

5. Reiser V, Zedreck J. Barriers to self-care and combatting compassion fatigue among oncology nurses. Poster presented at: 2019 Creating Healthy Work Environments Conference; February 2019; New Orleans, LA. bit.ly/2PoedbB.

Improving Compassion Satisfaction Amid a Nursing Shortage

In 2013, Yousuf Zafar, MD, and a colleague introduced the term "financial toxicity" in a 2-part article addressing the burdensome cost of cancer care. They discovered that for patients, even those with insurance, not only did chemotherapy have a physically toxic effect, but a financial one as well. An aging demographic, rising drug costs, higher insurance premiums, and skyrocketing deductibles were seen as largely to blame for dramatically increased out-of-pocket costs of care.

For many patients, the researchers found, the effects of financial toxicity were life changing— from canceling vacations to coming up with money for food and clothing. At the time, the medical community had no way to describe the impact this burden placed on patients. Zafar diagnosed the problem and gave it the name "financial toxicity" as a way to both identify and address it for what it truly was.

In an interview with Oncology Nursing News, Zafar discussed ways the OCM aims to reduce the cost of care and the opportunity that nurses have to impact patient outcomes while adapting to changes in practice resulting from the model. "Improving the patient experience, as the OCM intends to do," Zafar said, "can happen only when the cost of care is included as an integral part of cancer care moving forward."

For this to happen, he said, "the entire care team—particularly oncologists and nurses&mdash; plays a role...Among the providers patients prefer to talk to about their cost of care, the nurse ranks high, if not highest, on the list. If nurses are not asking patients about their ability to pay for treatment, then it is possible nobody else is either." Only after financial toxicity is recognized, can patients be linked with appropriate resources, such as financial assistance programs, drug coupons, and other options that exist. This is important, because even when patients receive value-based care, they still face high out-of-pocket costs. By linking value and quality with reimbursement, the OCM provides incentives to practices that focus on evidence-based care by reconsidering the use of high-cost, experimental drugs with uncertain or limited efficacy.

Although it is too early to tell how the OCM initiatives will impact the patient experience in the long-term, Zafar acknowledged that the goals of the model make sense, at least in theory: Attacking the problem of financial toxicity is a step in the right direction, and it begins by talking about it with as much concern and as routinely as the effects of cancer-killing drugs.

 Zafar SY, Abernethy AP. Financial toxicity, Part I: a new name for a growing problem. Oncology. 2013;27(2):80-81.

The Oncology Care Model (OCM) aims to reduce the cost of care and nurses can have an impact on patient outcomes while adapting to changes in practice resulting from the model.

Sticker Shock: How the OCM Hopes to Tackle Financial Toxicity

Last summer, nearly 200 oncology practices and 16 health insurance providers embarked on a collaborative new mission to transform the business of cancer care in the United States. Selected by the Centers for Medicare & Medicaid Services (CMS) to participate in a new Oncology Care Model (OCM), they will implement innovative methods of service delivery, care coordination, and financial accountability.

Simply stated, the model's goals are to improve quality and reduce cost. Achieving these goals, however, will require a commitment to, and compliance with, a complex process. The 5-year model is slated to run through June 2021, but its focus on providing accountable, patient-centered care is already a reality for nurses and other healthcare professionals practicing in oncology.

The OCM was released in February 2015 by the CMS Innovation Center to improve the access, appropriateness, and coordination of care for Medicare patients receiving chemotherapy through the alignment of financial incentives with practice. The 190 physician groups selected for inclusion were announced on June 29, 2016.

Dawn Hershman, MD, a medical oncologist and leader of the Breast Cancer Program at the Herbert Irving Comprehensive Cancer Center, Columbia University, explained some of the program essentials, including its 6 practice requirements in an interview with 

. For each 6-month episode of care, participating practices, which must be Medicare-enrolled and provide chemotherapy, will receive fee-for-services payments in addition to enhanced oncology services payments of $160 monthly.1 Episodes of care are triggered by initiation of chemotherapy and may be repeated as necessary throughout the program term. Performance-based payments will also be awarded according to quality improvement criteria and are intended to guide efficient, effective, and patient-centered collaborative practice.

24/7 patient access to qualified clinician

Comprehensive care planning incorporating the 13 components of the Institute of Medicine Care Management Plan

Treatment therapies compliant with nationally recognized guidelines

Use of certified electronic health record technology

Data-driven continuous quality improvement

OCM payment models are complicated and not the focus of this article, but it is important to note that financial incentives are not profit-enhancing; they are designed to reward practices that reduce the cost of care while maintaining and/or improving the quality of care delivered.

Participants in the model must demonstrate improvements and are required to report their efforts and results on a quarterly basis throughout the 5 years of the pilot performance reports to the practices outlining achievement measures according to benchmarking standards.

Hershman, although optimistic about the OCM, understands the challenges associated with providing high-value care: “Better quality does not always equate to lower cost.”

Practices may need to add members to the care team, such as patient/financial navigators, and IT and financial experts, thereby increasing existing costs, which may not be completely offset

by monthly service payments. Nonetheless, practices that, “significantly reduce per beneficiary total cost of care will see the largest rewards under the OCM.”

Although the OCM’s requirements are nonnegotiable, practices are encouraged to optimize the opportunity to receive performance-based incentives through innovation. The biggest

challenge may be meeting the requirements of the model without overspending.

Both oncology practice and payer interest in improving the efficiency and value of cancer care through this initiative surpassed expectations, according to the US Department of

Health and Human Services, which reported it received more than twice the expected number of practice applications. More than 3200 oncologists are now included in the project, covering

Program participants, including commercial payers, are listed on the OCM website.

 Practice participants range from solo oncologists to multiprovider systems located in rural, suburban, and urban settings throughout the United States. Annmarie Flannery, RN, the nurse manager of the OCM program at Montefiore Medical Center in New York City, said that the OCM “shines a spotlight on the notion of change and the importance of evolving the practice of care delivery.” Although practice at Montefiore was aligned with many OCM requirements prior to acceptance into the program, Flannery acknowledges that further improvements, such as adding OCM-specific social workers and enhanced IT data mining, will add to the center’s existing level of high-quality care.

Part of the performance-based payment methodology relates to quality, which in the OCM, focuses on 12 measures divided into 4 domains: (1) Communication and Care Coordination; (2)

Person- and Caregiver-Centered Experience and Outcomes; (3) Clinical Quality of Care, and (4) Patient Safety.

It is within these domains that oncology nurses do their best and most important work and where innovation finds opportunity.

Diane Baldwin, RN, of Mitchell Cancer Institute, and Anne Marie Rainey, RN, MSN, CHC, of Clearview Cancer Institute, whose centers are both located in Alabama, each have seen how

these measures promote high-value care. The communication/care coordination domain, for example, addresses unnecessary hospital and emergency department (ED) admissions. Baldwin

explained how preemptive interventions by oncology nurse clinical care coordinators make a difference and improve the patient experience.

“Prior to the OCM, we had lay navigators—specially trained individuals from various backgrounds, such as social work, education, or counseling&mdash;who helped patients with social support, advanced care directives, transportation, etc. Since then, we have added clinical care coordinators as part of a collaborative effort, and they manage the clinical aspect of care&mdash;managing symptoms, triaging patients at home, and arranging same day appointments for hydration or other needs.”

Rainey, who is an OCM project lead, concurs on the important role of care coordinators, but adds that meeting the requirements of the model can be challenging, due in part to added documentation. One positive outcome, said Rainey, pertains to screening for depression, which is 1 of the measures within the person/caregiver—centered experience and outcomes domain.

Prior to the OCM, depression screening happened, “most of the time,” but implementation of the model enhanced awareness. Now they make a concerted effort to routinely screen all

chemotherapy patients, even those who are not eligible for Medicare.

“We make sure we are addressing whatever nuances of their healthcare are important to them,” Rainey explained. Some clinical staff responded to the additional screening mandates by questioning the change. Explaining that not only is depression screening required, but also why—to provide better care&mdash;encouraged staff buy-in and helped them to fully engage with the work being done.

The remaining domains (clinical quality of care and patient safety) focus on appropriate chemotherapy regimens for various types and stages of prostate, colon, and breast cancer and

accurate documentation in the medical record of the patients’ current medications.

Baldwin and Rainey agree that although it is still too early in the model to determine how the cost-reduction aspect of the model will work in the long term, they do know that by reducing

unnecessary hospital and ED admissions with early and proactive intervention, they are able to rein in those costs and provide more effective care management for their patients.

Rainey also praises supportive efforts offered by OCM project leaders geared to help facilities as they progress through the model. Participating in focus groups and reviewing released case

studies have been very beneficial for providers in knowing what other practices have found works or does not work well. In this sense, collaboration is more than an OCM requirement; it

As the OCM pilot continues to evolve and practices find and share their successes, nonparticipating cancer centers, and the care community in general, can benefit from following

their journey, becoming familiar with the model’s key components, and scrutinizing their own delivery of services. Much remains to be learned and gained through creativity, collaboration, and commitment to excellence.  As Flannery stressed, “The Oncology Care Model gives us direction with our care and helps us focus on practicing our calling.” 

Center for Medicare & Medicaid Services. Oncology Care Model. Fact Sheet. go.cms.gov/29cD7az. Accessed April 26, 2017.

The Advisory Board Company. CMMI’s Oncology Care Model. Published June 20, 2016. bit.ly/2pmB8XH. Accessed April 26, 2017.

The ASCO Post. HHS Announces Physician Groups Selected For An Initiative Promoting Better Cancer Care. 2016. bit.ly/2p4KUgm. Accessed April 3, 2017.

Center for Medicare & Medicaid Services. Oncology Care Model. innovation.cms.gov/initiatives/Oncology-Care. Accessed April 26, 2017.

Center for Medicare & Medicaid Services. OCM Performance-Based Payment Methodology. innovation. cms.gov/Files/x/ocm-methodology.pdf. Published December

Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. bit.ly/2qfEPeT. Accessed April 26, 2017.

Nearly 200 practices across the United States are piloting an ambitious new mmodel that focuses squarely on delivering high-quality, lower-cost, patient-centered care.

Ellen Tichich, MFA, MSN, RN-BC

Articles

Adolescent and Young Adult Patients Face Unique Needs, Challenges

Improving Compassion Satisfaction Amid a Nursing Shortage

Sticker Shock: How the OCM Hopes to Tackle Financial Toxicity

Delivering Quality: What Nurses Can Learn From the Oncology Care Model