Adolescents and young adults (AYAs) with cancer diagnosed between the ages of 15 and 39 are a unique group of patients with distinct cancer epidemiology and developmental characteristics. Nearly 70,000 AYAs are diagnosed with cancer each year in the United States and cancer is the leading cause of disease- related death in this group.

AYA cancer patients are often considered to be in “no-man’s-land” for their oncology care as they may not fit a pediatric or adult oncology profile.

 When cancer occurs during this time of life, it can interrupt education, work, marriage, and parenthood.

 Furthermore, young adults in their 20s are uninsured at higher levels than older adults, meaning that access to timely diagnosis and follow-up care is challenging.

Due to AYAs’ unique characteristics, there is a growing effort to address their oncology needs. In 2005, the Adolescent and Young Adult Oncology Progress Review Group, a partnership between the National Cancer Institute (NCI) and LIVESTRONG Foundation, was developed to evaluate the clinical and research needs of this unique oncology population.

 In 2012, the NCI convened experts in AYA oncology to review the evidence, identify gaps, and provide research priorities on AYA oncology research.

Utah will soon launch the Huntsman Intermountain- Adolescent and Young Adult (HI-AYA) program R. Lor Randall, MD, FACS, and Carolyn Reynolds, MS, APRN, are Co-Directors of HI-AYA, which is a Huntsman-Intermountain Cancer Care Program Best Practices Task Force. Our goal is to develop patient navigation for AYAs with cancer throughout Utah. Funding support includes The L.B. & Olive S. Young Endowed Chair for Cancer Research and a Utah Department of Health grant.

The majority of AYA patients with cancer in Utah are never seen by a pediatric oncologist.

Because we know AYAs are less likely to be enrolled in a clinical trial, consultation from or treatment at a pediatric or adult cancer center may provide opportunities for this patient group.

Holly Spraker-Perlman, MD, MS, an assistant professor of Pediatrics at the University of Utah, is using Utah Cancer Registry data to ascertain what percentage of AYA patients are seen at a cancer center in Utah and to determine what percentage of these patients go on clinical trials. She will use this information as a platform to assess the need for a specialized AYA program in Utah. Dr Spraker-Perlman is also working to develop a survey to understand how primary care providers refer AYAs with suspected cancer to an oncology specialist.

Yelena Wu, PhD, is an investigator at Huntsman Cancer Institute who does research on healthy lifestyle behaviors (exercise, healthy diet). In the Cancer Survivor Health Study (CASH), she conducted focus groups and interviews with AYA cancer survivors to understand barriers to exercise and a healthy diet. Her research team found that there are several modifiable factors (eg, motivation, mood, knowledge, and skills) that could improve adherence to recommended behaviors for this population.

CASH also included survivors’ supporters (ie, family members, spouses, and friends). Survivors’ supporters were less informed about certain healthy lifestyle behaviors, meaning that supporters should be educated about recommendations for healthy lifestyle behaviors to support AYAs’ adoption of and adherence to exercise and a healthy diet.

Dr Wu also leads a study of the feasibility and acceptability of a smartphone reminder application to promote AYAs’ adherence to oral medications. Oral medications have an expanding role in cancer treatment, which places great responsibility on the patient. Nonadherence to oral medications is prevalent among AYAs and may impact their quality of life in addition to their survival. As such, implementing medication adherence interventions to support this distinct group of patients is crucial.

Through the research programs of Drs Spraker-Perlman and Wu, as well as the development of the HI-AYA initiative, Utah hopes to transform the care and treatment of AYAs with cancer.

1. Nass SJ, Beaupin LK, Demark-Wahnefried W, et al. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine Workshop (2015). Oncologist. 2015;20(2):186-195.

2. Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. US Department of Health and Human Services, National Institutes of Health, National Cancer Institute, LIVESTRONG Young Adult Alliance; 2006.

3. Kirchhoff AC, Spraker-Perlman H, McFadden M, et al. Sociodemographic disparities in quality of life for adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2014;3(2):66-74.

4. Parsons HM, Harlan LC, Lynch CF, et al. Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol. 2012;30(19):2393-2400.

5. Albritton KH, Wiggins CH, Nelson HE, Weeks JC. Site of oncologic specialty care for older adolescents in Utah. J Clin Oncol. 2007;25(29):4616-4621.

Articles

Partner Perspectives

Adolescents and young adults (AYAs) with cancer diagnosed between the ages of 15 and 39 are a unique group of patients with distinct cancer epidemiology and developmental characteristics. 

Supporting Adolescents and Young Adults With Cancer From Diagnosis Through Survivorship

		Joan Such Lockhart, PhD, RN CORLN, AOCN, CNE, ANEF, FAAN

	Joan Such Lockhart is a clinical professor at Duquesne University School of Nursing, Pittsburgh, Pennsylvania.

The Future of Nursing: Leading Change, Advancing Health

, the Institute of Medicine (IOM) emphasized the need for all nurses to assume leadership roles within their healthcare organizations, lead change to promote the health of Americans, function within the scope of their educational preparation, participate in learning throughout their nursing careers, and attain higher levels of education and training.

 More recently, the IOM addressed the chronicity of cancer and the need to ensure quality cancer care to an increasing aging population.

While oncology nurses have undoubtedly led quality cancer care and patient education initiatives, the current and projected growth of cancer survivors in the United States

 demands increased attention to developing oncology nurses in the educator role. Cancer survivors, who receive their healthcare services in various clinical settings over their lifetimes, are likely to be cared for by nurses without additional preparation in oncology nursing.

A recent study that investigated cancer content included in the curricula of nearly 250 US prelicensure RN programs revealed gaps between the depth of cancer content taught and its perceived importance.

 Cancer content was viewed as being more important than the depth at which it was taught. Barriers attributed to this gap included lack of time, an already full curriculum, and lack of access to oncology experts, clinical sites, and cancer resources. Similarly, a recent investigation to identify the educational needs of RNs who care for cancer survivors in nononcology clinical settings provided evidence from the perspectives of both oncology (N = 313) and medical-surgical nurses (N = 331).

 Barriers reflected those cited by schools of nursing.

Given these reports and trends in cancer care, oncology nurses should be prepared as educators who are able to identify the learning needs of diverse professionals, develop educational interventions targeted to meet these needs, and evaluate their impact on patient care. They must also design creative ways to share their expertise with colleagues new to cancer care. Finally, oncology nurses need to realize opportunities within nursing professional development in which their expertise can be integrated.

Expectations for all nurses to assume the role and responsibilities of an educator is evident in 

 Nurses engaged in clinical specialty practices, like oncology nurses, are also guided by standards published by their professional nursing organizations.

 Although documents exist that describe how oncology nurses should be prepared for their caregiving role,

 similar guidelines are lacking that can help us prepare nononcology nurses who care for cancer survivors. Specific educator competencies are also included in test blueprints for oncology certification at both generalist and advanced levels.

Oncology nurses can gain guidance from the 

Nursing Professional Development: Scope and Standards of Practice

 In the “Nursing Professional Development Specialist Practice Model,” 

 can help oncology nurses identify possible avenues in which they can share their cancer expertise with colleagues who are less familiar with oncology nursing. For example, they can present cancer care content in residency programs offered to newly hired nurses, sponsor continuing education (CE) programs on cancer, initiate unit-based journal clubs about oncology topics, or author educational resources to disseminate best practices in cancer care.

Various formal and informal educational resources are available to help oncology nurses gain comfort in their educator role. For example, baccalaureate-prepared nurses may pursue a formal academic graduate degree in nursing education. In addition to offering core courses on topics like evidence-based practice, pharmacology, and pathophysiology, these MSN programs include nursing education specialty courses in which nurses learn creative teaching strategies integrating the latest technology in face-to-face and virtual classrooms, simulation laboratories, and clinical settings. Attention is also paid to designing innovative curricula and evaluating the performance of learners using tests and competency assessments. Dedicated time is paid to expanding nurses’ clinical skills in the advanced practice clinical and educator roles, providing hands-on experience as an educator prior to graduation. Nurses who already possess an MSN can enroll in post-master’s nursing education certification programs.

Other less formal resources can help oncology nurses strengthen their educator skills. For example, ONS hosts a fee-based website “Educator Resource Center” (https://

/) that contains a variety of evidence-based teaching resources to prepare student nurses and clinical nurses. ONS members can join the Staff Educator Special Interest Group (

/) and network with other oncology nurse educators.

Other professional nursing organizations like the Association of Nurses in Professional Development (NPD; 

/) that support the work of NPD specialists may be helpful. Specialty and education journals (ie, 

Journal for Nurses in Professional Development and The Journal of Continuing Education in Nursing

), nursing professional development books, and CE programs can provide additional support.

Current and future growth in cancer survivors and cancer as a chronic disease present a need for students enrolled in schools of nursing and clinical nurses in nononcology settings to strengthen their cancer care competencies. Oncology nurses are in a prime position to lead cancer care education for nurses who care for cancer survivors.

1. Institute of Medicine. The Future of Nursing: Leading Change, Advancing Health. Washington, DC: National Academies Press. 2010.

2. Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press. 2013.

3. Institute of Medicine. Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population. Washington, DC: National Academies Press. 2013.

4. Eheman C, Henley SJ, Ballard-Barbash R, et al. Annual report to the nation on the status of cancer, 1975-2008, featuring cancers associated with excess weight and lack of sufficient physical activity. 

5. Lockhart JS, Galioto M, Oberleitner MG, et al. A national survey of oncology content in prelicensure registered nurse programs. 

6. Lockhart J, Oberleitner M, Felice T, Vioral, A. Are nurses without oncology preparation ready to care for cancer survivors? Recommendations for evidence-based professional development. Presented at: International Conference on Cancer Nursing, July 8-11, 2015; Vancouver, BC, Canada.

7. American Nurses Association. Nursing: Scope and standards of practice (2nd edition). Silver Spring, MD: American Nurses Association. 2010.

8. Brant JM, Wickham R. Statement on the scope and standards of oncology nursing practice: Generalist and advanced practice. Pittsburgh, PA: Oncology Nursing Society. 2013.

9. Jacobs LA. Statement on the scope and standards of advanced practice nursing in oncology (3rd edition). Pittsburgh, PA: Oncology Nursing Society. 2003.

10. Oncology Nursing Certification Corporation. Resource Center: Preparing for certification. Retrieved from http://www.oncc.org/resource-center/preparing-certification. 2015.

11. American Nurses Association & National Nursing Staff Development Organization. Nursing professional development: Scope and standards of practice. Silver Spring, MD: American Nurses Association. 2010.

While oncology nurses have undoubtedly led quality cancer care and patient education initiatives, the current and projected growth of cancer survivors in the United States demands increased attention
to developing oncology nurses in the educator role.

Preparing Nurses for Cancer Survivor Care-a Growing Need 

More people are living at least 5 years after their original pediatric cancer diagnosis than ever before. According to the Childhood Cancer Survivor Study (CCSS), 400,000 childhood cancer survivors are alive today, and that number is expected to grow to half a million by 2020.

But this recent progress in beating childhood cancers is also countered by some sobering statistics.

The American Cancer Society reports that two in three survivors of childhood cancer experience debilitating late effects from their treatment. These can include fertility issues, cardiovascular disease, pulmonary problems, endocrine issues, metabolic syndrome, growth delays, as well as second malignancies.

To serve this population of at-risk survivors, more and more survivorship clinics have been opening around the country to regularly monitor, educate, and support patients.

“We know survivors are living longer and are at increased risk for late effects. At the University of Kansas Cancer Center Survivorship Transition Clinic (KUCC STC), we provide comprehensive care that includes screening for late effects and providing education to minimize their risks and promote a healthy lifestyle,” explained Kyla Alsman, RN, BSN, nurse navigator at KUCC STC.

Of the nearly 400,000 childhood cancer survivors, about 70% are estimated to have a mild or moderate chronic condition, and about 32% are estimated to have a severe, disabling or life-threatening chronic condition.

An estimated 35% of the survivors, aged 20 to 49, had neurocognitive dysfunction, and about 13% to 17% of those in this age group had self-reported functional impairment, activity limitations, impaired mental health, pain, or anxiety and fear.

“We know that many of these morbidities are at least somewhat modifiable in the general population. However, we don’t know if typical population guidelines for preventive behaviors apply to this group,” lead author Siobhan M. Phillips, PhD, MPH, assistant professor of preventive medicine at Northwestern University Feinberg School of Medicine, said in a statement.

“We need to develop a better understanding of the multilevel factors including, but not limited to, physical activity, diet, and treatment characteristics, which influence childhood cancer survivors’ susceptibility to these morbidities in order to effectively prevent and delay their onset.”

Like other similar clinics, the health professionals at the Survivorship Transition Clinic workâ€¨ to prevent such morbidities by following the Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, which is available online and is a useful tool for all pediatric oncology nurses, Alsman noted.

Using the patient’s medical records, a consolidated treatment summary is made which includes demographics, past diagnoses, treatment, surgeries, and any late effects or symptoms. From there, health professionals at the clinic can screen for specific risks based on the patient’s treatment, educate them on how to minimize the risk, and provide information about further tests or specialist care if necessary.

“Based on the treatment summary and the survivorship guidelines, we are able to determine appropriate screenings for each survivor,” Alsman said. For example, patients who received cardiotoxic chemotherapy and/or chest radiation need to have frequent echocardiograms. Some chemotherapy agents and chest radiation may impact a survivor’s lung function which requires pulmonary function tests for screening. Many young adult survivors are concerned about the effects of treatment on their fertility. We will refer them to a reproductive endocrinologist for further screening and education.

“As a navigator, I help them make all of these appointments because it can be overwhelming for some of these patients. Trying to navigate a large healthcare system can be anxiety provoking, so being able to be that person of contact for them has really helped.”

Findings of a recent study showed that survivorship care is associated with increased knowledge of diagnosis, treatment history, and risk of late effects.

Researchers asked childhood cancer survivors from a single-institution survivorship clinic and survivors receiving routine follow-up care about diagnosis, age, and their time of therapy. The study found that survivorship participants were more likely than those receiving routine care to correctly report their diagnosis and indicate a previous discussion of risks of late effects.

And not only are survivorship clinics beneficial to patients, but they’re desired by survivors as well, according to a research project done by Alsman’s colleagues from Midwest Cancer Alliance (MCA), the outreach arm of The University of Kansas (KU) Cancer Center, and Children’s Mercy. The project, which prompted the development of the Survivorship Transition Clinic, revealed that of 272 young adult survivors who had been treated at KU Medical Center or Children’s Mercy, 52% wanted more information about what late effects to expect, and 47% wanted more information on how to deal with such late effects, including what tests were necessary.

The clinic, which opened November 2014, was established through collaboration with MCA, KU Medical Center, and Children’s Mercy.

“Prior to developing the survivorship transition clinic, patients 21 years and older were transitioned to their primary care provider,” said Alsman. Research shows primary care physicians may not feel comfortable caring for childhood cancer survivors because of a lack of familiarity with their unique needs and that primary care providers prefer to care for survivors in collaboration with providers who are more familiar with the survivorship guidelines.”

“The collaboration between KUCC, MCA, and CMH allows the transition to be seamless as survivors transition to the adult setting. In my role I spend time at Children’s Mercy Hospital and the KUCC Survivorship Transition Clinic to help minimize anxiety related to transition. This allows me to establish a relationship with patients during their appointment at CMH, and also provide continuity as they transition to the STC at KUMC.”

The Survivorship Transition Clinic has grown over the past year, expanding its clinic hours and adding patients. “It’s sad that that many people need care, but it’s exciting that we’re able to provide that care,” Alsman said.

At UC Davis Comprehensive Cancer Center in Sacramento, California, Kathryn Wells, RN, MS, CPNP, CPON, cares for pediatric patients at the center’s GREAT (Getting Regular Evaluations After Treatment) clinic.

Established back inâ€¨the 1980’s, GREAT was revised in 2012 to monitor late effects and survivorship issues in a for- mal way rather than on a case-by-case basis as it was done in the past. The program uses an innovative computer tool known as Passport for Care to help predict the kinds of late effects patients may face as a result of their treatment, and guides clinicians, patients, and their families on how to watch for and manage them.

“The intensity of the treatment makes it important for us to have these late effects clinics because we’ve not just cured their cancer or made them cancer free, but we’ve given them treatments that really can have effects on their health,” Wells said. “It’s a process that we need to start when they finish their treatment, and we need to educate them because it will be some- thing that they live with for the rest of their lives beyond when they come to see us in pediatric oncology.”

Along with screening for late effects, many survivor clinics have also begun to address psychosocial needs, bringing in social workers and psychologists and using distress screening thermometers. Another area that’s proven to be troubling for some young survivors can be their academic performance.

“These kids just don’t learn like their siblings do. It’s not that they can’t learn, but there are specific effects that we see. We see a much higher rate of problems with inattention, problems with processing speeds, and executive functioning,” Wells explained. “These kids really needâ€¨to be followed closely in their schooling to make sure that they get the resources that they need to be successful.”

And as far as making her patients comfortable and encouraging them to follow up, Wells says, that’s basically her job description.

While the old model of announcing to a patient that they’re cancer free and throwing a party is a nice idea, she said, it’s an injustice to the patient. Rather, Wells sits down with her patients and explains the risks as well as modifiable risk factors and things that they can actively do to stay healthy.

“I try to put everything into perspective for them in a very, very concrete way. I take that big scary thing—recurrence&mdash;and try to break it down for them into pieces that they can grasp onto,” she said. “We need to help patients and families understand that it’s important that the last day of chemo is not the last day they see us.”

Passport for Care was developed by Marc Horowitz, MD, a pediatric hematologist oncologist at the Texas Children’s Cancer Center, in collaboration with the Baylor College of Medicine in Houston, Texas, where he is a professor in the Department of Pediatrics, Hematology-Oncology section, and the Children’s Oncology Group, an NCI— supported clinical trials group.

It is an interactive Internet resource that provides the user with accurate, timely, and individualized healthcare information by assembling survivor care recommendations that are individualized based on the survivor’s treatment history. It also provides end- of-treatment care summaries and customized educational resources.

The Passport for Care application, now available to Children’s Oncology Group (COG) member institutions, is currently being used by 120 clinics throughout the United States. More than 60 additional Children’s Oncology Group member institutions are undergoing the implementation process and the Passport for Care application has been used with over 15,000 patients to provide care summaries and guidelines to practitioners in the clinics.

For more on the Children’s Oncology Group Guidelines:

For a list of survivor follow-up clinics:

http://www.ped-onc.org/treatment/surclinics.html

1. Armstrong GT, Yasui Y, Chen Y, et al. Reduction in late mortality among 5-year survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. 

2. Phillips SM, Padgett LS, Leisenring WM, et al. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. 

3. Lindell RB, Koh SJ, Alvarez JM, Koyama T, et al. Knowledge of diagnosis, treatment history, and risk of late effects among childhood cancer survivors and parents: The impact of a survivorship clinic. 

Cover Story

For Survivors of Childhood Cancers, Specialized Support Can Make All the Difference

A cancer diagnosis once understandably brought a singular focus on fighting the disease, with less attention paid to quality of life once the patient’s active treatment was over. Yet swelling numbers of cancer survivors—nearly 15 million in the United States currently with more than 18 million expected by 2020&mdash;is shining a much-needed spotlight on the importance of proactively assessing individual risks for late effects of cancer treatment, alongside careful survivor monitoring and support.

In addition to the well-established risk for secondary malignancies and cardiovascular issues, survivors can experience a wide spectrum of both physical and psychological effects from traditional cancer treatments like chemotherapy and radiation, and recent changes in treatment modalities add yet another layer of complexity to the mix.

“We know certain agents have a higher risk of cardiotoxicity, whether it’s Herceptin or an anthracycline—these are more established therapies that can increase that risk. We don’t really know as much about what the targeted therapies are doing, and also, what about these different drugs in combinations? I think that’s the piece that’s really changing,” explained Jennifer R. Klemp, PhD, MPH, in a recent interview with Oncology Nursing News.

Klemp, an associate professor at the University of Kansas Medical Center (KUMC) and director of its Cancer Survivorship Center, also serves as chief executive officer for Cancer Survivorship Training for Healthcare Professionals (Sidebar) a series of online and mobile courses for practitioners, including one focused on the “Physical, Late, and Long-Term Effects of Cancer and Its Treatment.” Coming this fall is another unit focused on cardio-oncology she developed in collaboration with Daniel J. Lenihen, MD, professor of Medicine at Vanderbilt University Medical Center.

Making sure that survivors get the appropriate screenings to avert problems like cardiotoxicity and bone loss is vital to their long-term quality and quanitity of health. 

“I tell all of my breast cancer survivors that you have an equal or greater risk of dying of cardiovascular disease than your breast cancer; we’re so worried about your breast cancer ... we really need to be paying equal attention to cardiovascular disease,” said Klemp. However, the situation is mixed with regard to survivors adhering to their recommended follow-up screenings:

“Breast cancer survivors are very good about getting their mammograms or other types of imaging, but breast cancer survivors are not good at getting their colonoscopies,” Klemp noted.

“If our job as a comprehensive cancer center is to treat and prevent further cancers, then we need to make sure that they’re getting their cancer screenings.”

Klemp presented research from a study of 427 women treated at the breast cancer survivor clinic she directs at KUMC over the 6-year period since the clinic’s inception in 2007 at last year’s annual meeting of the American Society of Clinical Oncology (ASCO. Among the findings she reported was how the clinic’s proactive approach and fast-track referral system dramatically improved screening uptake

• 77% referred for colonoscopy completed colon cancer screening

• 92% referred attended cardio-oncology screening visit

• 100% referred completed a bone miner- al density analysis

• Lymphedema education and management increased significantly

The researchers concluded that, “multidisciplinary care facilitated through a continuity of care survivorship clinic improves compliance with recommended follow-up and cancer screening,” but acknowledged that additional research on the cost and impact of delivering survivorship care is needed.

In this burgeoning era of precision medicine, the time seems especially ripe for improving risk assessment for cancer survivors, especially given the fact that the majority of survivors won’t be symptomatic for effects which may occur years later.

Whereas cancer diagnosis and treatment planning has become increasingly personalized, Klemp noted, “there are currently few models for stratifying risk of physical and psychosocial effects of cancer and its treatment ... This is a crucial gap to fill to more effectively manage survivors and their caregivers and to lower overall healthcare costs.”

“You can look at these long lists of late and long-term effects, and they include everything that could ever happen to you—I don’t think that’s useful,” Klemp stressed.

“Instead of giving a patient a recipe for all of the things that could happen, couldn’t we ask 3-4 more questions, so that we can better risk-stratify them to help determine who is at highest risk,” she continued, thus better targeting survivors who need careful monitoring for cardiopulmonary effects or support to promote bone health, for example.

Klemp sits on the National Cancer Institute’s Community Oncology Cardiotoxicity Task Force, which is currently collaborating with the National Heart, Lung, and Blood Institute and professional societies like ASCO in the development a pre-assessment tool clinicians can use to help understand an individual patient’s risk for cardiac effects even before their cancer therapy begins, looking at such issues as family history, medication usage, elevated lipid levels, and shortness of breath.

That means for nurses, “really being mindful of the symptoms your patients tell you, but also paying attention to shortness of breath, past history, any type of fluid retention, anything that would indicate any signs of heart failure.” She is currently conducting research to validate a gender-specific symptom assessment checklist that would assist clinicians with that all-important risk stratification.

“If you can take that additional step, that’s not only extremely beneficial to the patient, but it’s going to streamline their care. We’re dealing with what’s most important.”

Cancer Survivorship Training for Healthcare Professionals

Many larger cancer centers have dedicated survivor clinics, but providing such services in the community setting can be more challenging, notes Jennifer R. Klemp, PhD, MPH.

To address the growing need for specialized survivor services, Cancer Survivorship Training (CST) provides online continuing education courses and an online community for healthcare professionals to facilitate communication and collaboration among all healthcare professionals to deliver patient-centered survivorship care that is co- ordinated and evidence-based. The program’s target audience includes oncology nurses, physicians, mid-level practitioners, allied health professionals, and practice administrators.

Each course is developed in collaboration with medical content matter experts and provides the information needed to address the primary issues associated with cancer survivorship.

In addition to courses focused on late and long-term physical effects of cancer treatment and the upcoming new unit on cardio-oncology, CST has units on such topics as: Psychosocial Issues and Cancer; Energy Balance (Diet and Exercise); Fertility Preservation, and Screening for New or Recurrent Cancer.

For more information on these courses and the entire CST portfolio, visit 

1. Klemp JR, Ranallo L, Knight CJ, et al. Breast cancer survivorship care: A continuity of care model of delivery. J Clin Oncol. 2014;32(suppl 26; abstr 116).

2. Klemp JR. Survivorship care planning: one size does not fit all. Semin Oncol Nurs. 2015;31(1):67-72 

A cancer diagnosis once understandably brought a singular focus on fighting the disease, with less attention paid to quality of life once the patient's active treatment was over.

Managing Cancer Treatment's Late Effects and Identifying Those Most at Risk 

For the over 1.5 million individuals expected to be diagnosed with cancer in 2015, pain can be a significant problem.

 Pain can seriously affect quality of life and interfere with all daily activities. Cancer pain is reported in about one third of those completing treatment and two thirds of those undergoing treatment, as well as two thirds of those with advanced disease.

Studies indicate that over 40% of patients with cancer do not get adequate relief from their pain.

 Under treatment of pain has significant adverse effects and is associated with serious patient distress and depression.

Effective pain treatments exist. Proper application of the World Health Organization Pain Relief Ladder allows 80% to 90% of patients to find relief from pain, regardless of care setting or social and/or cultural environment.

 This three-step "ladder" includes the prompt oral administration of drugs in order (non-opioids; then, as needed, mild opioids; then strong opioids (eg, morphine), until the patient is pain free. To maintain freedom from pain, drugs should be given around the clock at a specific time interval depending on the drug, rather than on demand or PRN. For many with severe cancer pain, around-the-clock with long-acting opiates is the preferred treatment.

Unfortunately African Americans experience a disproportionate burden of cancer pain and suffer worse treatment outcomes.

 Although fundamentally important, the explanations for these disparities in cancer pain are not fully known; most likely an interplay between individual, social, and system-level factors contribute to African Americans with cancer pain not getting adequate relief.

Numerous individual factors may affect a person’s ability to get relief from pain. African Americans with cancer pain have expressed reluctance to verbalize pain or to seek help due to beliefs of stoicism, concerns about possible addiction and drug tolerance, fears of side effects, and a desire only to take medications when pain is severe.

Counterproductive beliefs about pain include such notions as, pain is an expected part of life; grin and bear it; pain is God’s will; people that succumb to pain are weak.

The role of social support as it relates to pain relief can both positively and negatively influence a person to take pain medication when in pain. Attitudes about pain and pain treatment may influence both the individual experiencing pain and their social network, especially in the the context of the current national dialogue about drug abuse and the over-prescription of opioids.

Nearly 15,000 people die each year of overdoses involving prescription painkillers, the CDC reports.

Opiate abuse widely discussed in the medical community and lay media, and this likely influences not only individuals who have been prescribed medications for cancer pain, but also the individuals who support them. Despite—or perhaps because of&mdash;these influences, cancer patients often underuse prescribed opiates rather than overuse these medicines.

Systemic barriers to pain relief for minorities have been identified.

 Regardless of age or socioeconomic status, African Americans are less likely than Whites to receive analgesic medication for pain. Primary providers are more likely to underestimate pain intensity in African Americans than in other ethic groups. Pharmacies located in minority neighborhoods are less likely to carry sufficient prescription analgesics than those located in white neighborhoods. Compared with white patients, black patients were more likely to have more referrals for substance abuse assessment, fewer referrals to a pain specialist and increased drug urine tests.

These alarming examples of bias in our healthcare system impact cancer patients daily. Care of pain does not occur in a vacuum but in a context that includes social and system- level influences (family, friends, neighbors, church community, and healthcare systems). Many avenues exist to improve cancer pain relief for minorities, and the role of nurses is a great place to start.

Nurses must use their assessment skills to assess cancer pain in all individuals and partner with patients to help them achieve pain relief. The first step in building this partnership is to ask individuals to describe how they have managed their pain through self-management strategies.

In a recently published qualitative study of advanced cancer patients,

individuals reported the use of many nonpharmacologic strategies to manage pain. Study participants adjusted the speed of their activities or type of activities in search of pain relief. Despite not feeling well, participants needed to continue to care for themselves and their family and plan out their day. Many changed the activities they participated in, sometimes eliminating activities or trying new activities. Most participants spoke of adjusting their diet in order to manage pain.

As well as self-management strategies individuals use to treat pain, patients with cancer pain are often expected to manage complex pain medication regimens. Nurses need to examine the complexity of these medicine regimens frequently. With prescription medications, healthcare providers write the order, but the patient has the responsibility of taking the medications and often adjusts the medications to suit their needs. Pain medication adjustments included differentiating the type, dose, and timing of the medication. In the study of advanced cancer patients, participants took medications for pain, but also for cough, sleep, anorexia, wheezing, insomnia, constipation, nausea, high blood pressure, neuropathy, blood clots, depression, and anxiety and as part of their cancer treatment. All of these medications required education which most often is provided by nurses. The decisions that patients make as they manage complex medication regimens need to be examined further.

Understanding the barriers to symptom relief for all individuals is important. Additional barriers may exist for African Americans and other minorities at the individual, social, and system level. Nurses have a great opportunity to assist patients in working through these barriers with the end result of improved pain relief for all. 

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Anderson KO, Richman SP, Hurley J, Palos G, et al. Cancer pain management among underserved minority outpatients: perceived needs and barriers to optimal control. Cancer. 2002;94(8):2295-2304.

 Centers of Disease Control and Prevention. Vital Signs: Prescription Painkiller Overdoses in the US. http://www.cdc.gov/vitalsigns/PainkillerOverdoses/index.html. Accessed August 18, 2015.

Meghani SH, Thompson AM, Chittams J, et al. Adherence to analgesics for cancer pain: a comparative study of African Americans and whites using an electronic monitoring device. J Pain. 2015;16(9):825-835.

National Institute of Neurological Disorders and Stroke. Disparities in Pain Care. http://painconsortium.nih.gov/News_Other_Resources/dpc.pdf. Accessed on August 17, 2015.

Yeager KA, Sterk CE, Quest TE, DiIorio C, Vena C, Bauer-Wu S. Managing one's symptoms: a qualitative study of low-income African Americans with advanced cancer [published online ahead of print June 20, 2015]. Cancer Nurs.

Cancer Pain-Is Relief in Sight for All Cancer Patients? 

I am used to it now, the chuckles and candid references to compasses and aviation from some and the grateful looks from others, as though I have just extended them a lifeline.

I am a nurse navigator. As the prevalence of patient navigation grows, particularly in the realm of oncology care, we often still struggle to define the role and illustrate its value. At times patients bring to the relationship their own notions of what their navigator will be to them, but more often they wait expectantly as I attempt to define it for them. My party line for what my role is as a navigator has evolved over the years and now cites my mission to coordinate, advocate, expedite, support, educate, and connect on behalf of the patient.

I started as an oncology nurse navigator following patients with gynecologic malignancies in February 2013. Despite having several years of experience as an inpatient oncology nurse, I was still struggling to find my sea legs in the brave new world of ambulatory oncology. Slightly unnerved that there was no clear endpoint to my day and no oncoming shift to watch over the flock by night, I found myself considering many aspects of my patients’ lives that would have previously been overshadowed by the din of acute care. Suddenly I was afforded the luxury of considering each human being—mind, body, and spirit&mdash;with the utmost care. Although this inspired me, it posed challenges as I strove to fully engage while still being mindful of boundaries: to care, but to preserve part of myself.

I carry within me the memory of Connie, one of the first patients I navigated. Connie was a 55- year-old mother of three young adult children of whom she was fiercely proud. She had originally been treated with surgery for early stage endometrial cancer. At the time of our meeting her endometrial cancer had recurred with a vengeance, riddling her liver with tumors and causing debilitating pain and nausea. Just after the first office visit I attended with Connie, during which her oncologist had discussed her remaining treatment options and she had chosen to try chemotherapy, she completed a written distress screening tool. On the form, she rated her distress level a 6-7 out of 10 and listed under other problems, “moving through cancer medically alone.” In the margin of the screening tool she scribbled, “Good news—today I met my very own nurse navigator (GYN) who came to my doctor’s office and introduced herself. She was awesome. Thank you LGH.” I was humbled upon reading this. I had not yet provided any real navigation for Connie, but she seemed comforted by the mere presence of a nurse navigator and the knowledge that someone was medically in her corner.

Over the next few weeks Connie struggled to tolerate her chemotherapy. She weathered significant fatigue and nausea remaining steadfast in her desire to live. Her older daughter was expecting a baby in 2 months, the first grandchild, and Connie brightened each time she spoke of baby June (who was due in May) and her development. At the same time, I scrambled to find my way as a nurse navigator by establishing the allies in expediting care that are critical to patient navigation and striving to find balance in this new role. Connie’s insurance plan was terminating, and her new plan had significantly higher out-of-pocket costs. As I sifted through options, I tried quickly to secure appointments for necessities, such as a mediport placement and blood work.

I was learning that the essence of navigation is being attuned to the needs of the whole patient and her family, as well as all of the hopes and fears, attitudes and temperaments they bring to the experience. I also became keenly aware that nursing care and navigation are only able to impact some of these needs; others would be beyond my control.

While Connie took her treatments with grace, and quietly labored to keep going, her husband Gordie battled to keep the family afloat. Gordie, self-employed and with two children in college, expressed feeling torn between the obligation to work and his need to be with Connie. He described himself as “a simple guy” and found the various prn medications prescribed for Connie’s symptoms overwhelming.

I came to expect a call most days from Gordie and talked him through the constipation, nausea, and poor appetite that plagued Connie. One morning they showed up at the oncologist’s office for an unexpected visit. Connie was restless and pacing. She could barely sit down and was unable to articulate her discomfort. Upon further discussion with Gordie, it came to light that Connie had developed akathisia after taking several doses of Compazine, a medication that was new for her. I could see the weariness in Gordie’s eyes for around every turn there was a new hurdle. Though I couldn’t change the reality of what this family was enduring, I became a consistent source of support for them in these hours of tumult.

I’ve navigated dozens of patients like Connie since then, although each story is unique. Still, Connie’s journey stays with me as it reminds me of the importance of being present. Even without the toolbox of connections and contacts or the intricate understanding of the twists and turns of the healthcare system which I later developed, being a reliable presence to which Connie and her family could turn was paramount. As nurse navigators we have a spectrum of capabilities and ways we can impact a patient’s life but often it is providing the steadying hand during the crisis that means the most.

Upon meeting Connie I knew that her time on earth was limited, but somehow I felt certain she would live to see her grandbaby arrive. That she did not left me saddened at the thought of a young woman negotiating new motherhood without her own mother; saddened at a grandmother unrealized. I suppose I imagined that Connie’s drive to meet baby June could overcome her failing body. In the end, we are left with what is and our feeble attempts to draw meaning and make sense of it.

During my last phone call with Gordie, a man to whom I had spoken almost daily, he recounted her peaceful death and her smile in the last hour of life as she sat among her family. Gordie expressed his gratitude to the medical team and said, “Connie would tell you to keep doing what you’re doing.” And I have.

Annie Lattanzio Hale RN, BSN, OCN, is an oncology nurse navigator at Lancaster General Health Ann B. Barshinger Cancer Institute, specializing in gynecologic and hematologic malignancies.

Nurse Navigators

I am used to it now, the chuckles and candid references to compasses and aviation from some and the grateful looks from others, as though I have just extended them a lifeline. 


Finding Our Way by Helping Patients Along Their Way

We continue to marvel at the tremendous strides made in cancer care, a record of progress that means millions of people are now surviving cancer, and many for a very long time. Yet this good news brings its own set of challenges for today’s healthcare practitioners, because cancer treatments like chemotherapy and radiation can have lasting effects such as cardiotoxicity and recurrent cancers that may appear many years later.

 this month, we explore how vigilant monitoring of survivors is essential and how precision medicine can identify those individuals most at risk of these effects and make sure they get the appropriate screenings and follow-up care.

Late effects of a cancer diagnosis are not only physical of course and can include fear of recurrence, lingering depression, and sexual challenges. Our editors were on hand in Washington, DC, for the 2015 World Congress on Psycho-Oncology, interviewing presenters about their latest research to help patients cope with the distress of a cancer diagnosis and manage those symptoms which can sometimes be overlooked, but are so important to overall quality of life. The meeting marked the first time the American and international psychosocial oncology societies met jointly, an impressive assembly of more than 900 experts from 49 countries.

 on a therapy option that we first covered in 2011—hot chemotherapy bath. We talked with experts in hyperthermic intraperitoneal chemotherapy (HIPEC) about how the treatment is being used in practice today to treat a variety of gastric and gynecologic malignancies. Selecting the right patients for HIPEC is essential, and nurses play a critical role in supporting them throughout this extensive procedure and long period of recovery.

 featured in this issue of Oncology Nursing News touch on two critical issues in cancer care today. Joan Such Lockhart of Duquesne University School of Nursing makes a strong case for the need to improve cancer knowledge among all healthcare practitioners, so that they can effectively treat the burgeoning numbers of survivors who they will be seeing in their clinics. And Katherine Yeager of the Nell Hodgson Woodruff School of Nursing at Emory University takes on the all-important issue of cancer pain, an issue of critical importance, with studies showing that 40% of patients with cancer do not get adequate relief from pain.

We welcome your feedback and suggestions on topics you’d like to see in the pages of this journal and on our website, Nursing.OncLive.com. Please reach out to 

From the Chairman

We continue to marvel at the tremendous strides made in cancer care, a record of progress that means millions of people are now surviving cancer, and many for a very long time. 

Keeping Watch: Monitoring Survivors for Late Treatment Effects

As the new USP Chapter 800 regulations for the handling of hazardous drugs are being finalized, stakeholders—including oncology nurses&mdash;are preparing for a renewed emphasis on the safe preparation and administration of chemotherapy in their daily practice.

Although the comment period for USP 800 ended May 31, 2015, the timetable for when the final chapter will be issued remains uncertain. In the meantime, the proposed regulations have already prompted professional societies like the Oncology Nursing Society (ONS), the American Society of Clinical Oncology, and the Hematology/Oncology Pharmacy Association to issue a joint position statement to help educate their members about safe handling and also requesting that practices be given enough time to implement the new safe practice standards.

Among the key safety protocols in the proposed USP 800, is the requirement that nurses administering hazardous drugs to patients use closed-system transfer devices (CSTDs). In the current draft USP 800, explained Stephen Eckel, PharmD, MHA, BCPS, use of CTSDs is only a recommendation for pharmacy, despite the positive data pointing to their mechanism as a means to reduce occupational exposure. Eckel is a clinical associate professor at the University of North Carolina Eshelman School of Pharmacy and associate director of pharmacy at University of North Carolina Hospitals, Chapel Hill.

“These devices are very important when it comes to preparation and administration, and I think our practice has improved since we started using them,” explained AnnMarie Walton, PhD, MPH, RN, OCN, CHES. “They help us to keep safety in mind, and they have been more functional than anything we’ve used in the past.”

Walton is currently a postdoctoral fellow at the University of North Carolina (UNC) at Chapel Hill, where her research is focusing specifically on antineoplastic exposure among nursing assistants working within an interdisciplinary team.

Her passion for raising awareness of the risks of occupational exposure to hazardous drugs was actually cultivated years earlier, beginning in 2009, while working as a clinical nurse in hematology/oncology for UNC Health Care.

It was at that time when she and her nursing colleagues undertook a comprehensive examination of how hospital policy aligned with the 2004 NIOSH Alert: Preventing Occupational Exposures to Antineoplastic and Other Hazardous Drugs in Health Care Settings, which continues to be the exemplar for safe practice.

Her clinical practice group found that while they were doing really well in some areas of nursing, improvements were needed in several areas, among them: the use of plastic-backed pads to prevent spray when flushing the toilet, failure to exclusively use chemo-rated gloves in oncology areas, and a lack of signage informing all healthcare personnel and family members that a patient had received a hazardous drug within the last 48 hours.

“We also didn’t have good education for our nursing assistants and housekeeping or for patients and their families at home,” Walton explained, and her working group was able to enlist institutional support for a number of needed safety improvements.

Walton has shared the lessons learned from this advocacy and consensus-building experience before many audiences, including the North Carolina Nurses Association, the North Carolina Organization of Nurse Leaders, and her local Triangle ONS chapter, as well as in an article published in the Clinical Journal of Oncology Nursing.

North Carolina is one of only a few states which have enacted their own more stringent hazardous drug handling safety standards, and Walton is an ardent advocate for safe handling of hazardous drugs at the local, state, and national level.

As the new USP Chapter 800 regulations for the handling of hazardous drugs are being finalized, stakeholders-including oncology nurses-are preparing for a renewed emphasis on the safe preparation and administration of chemotherapy in their daily practice.


September 2015