Gretchen McNally, PhD, ANP-BC, AOCNP, microspecializes in immunodeficiency- related cancers. - Photo by Jodi Miller

The current coronavirus disease 2019 (COVID-19) pandemic is not the first instance where nurses have found themselves caring for patients with a mysterious and unpredictable disease. In the early 1980s, hospitals around the world began to see patients, primarily young gay men, presenting with severely compromised immune systems, rare cases of pneumonia, and aggressive cases of Kaposi sarcoma, a cancer that causes lesions in the soft tissues.

At the time, clinicians and investigators had no idea what caused the outbreak, how the virus was transmitted, or how it should be treated. Some referred to the disease as the "gay cancer" or "gay-related immune deficiency." It wasn’t until 1983 that HIV was identified as the cause of AIDS and investigators recognized that HIV could affect anyone.

Today, 40 years after the beginning of the HIV/AIDS outbreak, oncology nurses continue to care for patients with AIDS-related and nondefining AIDS cancers.

Research shows that individuals with HIV/AIDS are at a higher risk of getting certain types of cancer because they have a severely weakened immune system.

Although advancements in antiretroviral medicines now allow those with HIV/AIDS to live longer lives, many of these patients continue to face barriers to cancer care and, in some cases, a stigma that can negatively affect their health outcomes.

Gretchen McNally, PhD, ANP-BC, AOCNP, a nurse practitioner in hematology at The OSUCCC — James in Columbus, Ohio, microspecializes in immunodeficiency-related cancers and says nurses play a critical role in ensuring that patients fighting both HIV/AIDS and cancer receive inclusive services and care.

HOW AIDS-DEFINING AND NON—AIDSDEFINING CANCERS DIFFER

McNally notes that when patients with HIV develop certain types of cancer, their disease has progressed to AIDS.

Gretchen McNally, PhD, ANP-BC, AOCNP, microspecializes in immunodeficiency-related cancers. “These cancers are known as AIDS-defining cancers and include Kaposi sarcoma, aggressive forms of non-Hodgkin lymphoma, and cervical cancer,” she says. “Some patients with HIV are also more likely to develop non—AIDSdefining forms of cancer, but these forms of cancer don’t indicate that their condition has progressed to AIDS.” McNally adds that non–AIDS-defining cancers include head and neck cancer, anal cancer, lung cancer, liver cancer, and Hodgkin lymphoma.

“While AIDS-defining cancers have decreased with effective combination antiretroviral therapy, non—AIDS-defining cancers have increased and account for more than half of all HIV malignancies,” McNally says. “Because people with HIV have a compromised immune system, they’re also more at risk of viruses that can lead to cancer such as the human papillomaviruses [HPV].”

HPV is linked to cancers of the penis, anus, vagina, vulva, mouth, and throat. Although advances in antiretroviral therapy have resulted in HIV being treated as a chronic health condition, McNally says because those with HIV/AIDS are living longer, their increased life span also increases their risk of developing cancer. Approximately 1.2 million individuals in the United States are currently living with HIV.2

Although it’s been more than 40 years since health care professionals first treated cases of HIV and AIDS, stigma and discrimination still persist in health care. In 2018, the Centers for Disease Control and Prevention released a review analyzing HIV-related stigma by health care providers.3 Among their findings, investigators reported that stigma can be manifested through inadvertent behaviors and beliefs, including homophobia, transphobia, racism, and negative views of people who use drugs.

“The solution to reducing any stigma is education,” says McNally, who has seen the stigma of HIV transcend to both health care providers and patients.

“Some patients suffer from depression because they believe an HIV diagnosis was their fault,” McNally says.

To fully understand the needs of their patients with HIV/AIDS and help reduce the stigma, McNally says, health care providers must expand their knowledge on issues such as sexual orientation, gender identity, and racial disparities. Although the United States has a policy goal of eradicating HIV by 2030, disparities in HIV care continue to exist.

“We’ve been seeing more cancers, including Hodgkin lymphoma and lung cancer, in younger patients,” McNally says. Statistics show that lung cancer is already a leading cause of death in those with HIV, particularly among individuals who smoke, and it is projected to become the most common cause of cancer in individuals with HIV by 2030 if current trends continue.

To combat rising rates and help patients with HIV reduce their cancer risk, McNally says, health care providers should emphasize prevention and address risk factors. Nurses can do the following:

• Recommend smoking cessation programs to those with HIV to possibly reduce their risk of lung cancer and other tobacco-related diseases.

• Educate patients on the importance of regularly taking their HIV medications. Maintaining a higher CD4+ T-cell count can reduce the risk of AIDS-related cancers.

• Encourage patients to get the HPV vaccine. “The vaccine has been shown to prevent anal and cervical cancers,” McNally says.

TREATMENT CONSIDERATIONS FOR PATIENTS WITH HIV/AIDS AND CANCER

In 2018, a team of health care providers gathered to create new National Comprehensive Cancer Network (NCCN) treatment guidelines to ensure individuals with HIV who also have cancer receive safe and necessary treatment.

Piera Wong, MS, RN, AOCNS, an oncology clinical nurse specialist at Zuckerberg San Francisco General Hospital and Trauma Center and an assistant clinical professor at the University of California, San Francisco, says nurses and physicians at her facility continue to follow these guidelines.

“We have a board-certified oncology pharmacist review all proposed cancer therapy and antiretroviral medications to ensure there aren’t any drug[-drug] interactions,” Wong says. “We also follow patients closely from diagnosis to treatment through survivorship.”

Wong stresses that nurses should also address preventive care with patients, encouraging patients to adhere to annual screenings such as colonoscopies, pap smears, and skin cancer checks.

Ensuring that patients with HIV have access to appropriate cancer care is also a priority. One recent study found that individuals living with HIV have lower rates of cancer treatment, which may contribute to worse survival rates in certain cancers. The study also found that barriers to care sometimes include low income, no insurance or underinsurance, employment instability, lack of social support, and HIV-related stigmas.

Yet even with appropriate treatment, Wong says, some patients with both HIV and cancer experience poor outcomes. A study published in 

 found that outcomes for patients over age 65 with HIV and cancer were significantly poorer than patients who were the same age and HIV negative. The study suggested the higher mortality risk was because of immune suppression.

“This is one reason why it’s so important to allow [patients with] HIV to enroll in clinical trials,” McNally says.

Although patients with HIV were excluded from cancer clinical trials in the past, that appears to be changing. Last year, a study conducted at Fred Hutchinson Cancer Center in Seattle, Washington, found that patients with HIV and cancer might be successfully treated with the immunotherapy drug pembrolizumab (Keytruda).

Last year, the National Cancer Institute issued new guidelines for patients with HIV and clinical cancer trials. The guidelines state that individuals who are HIV positive should not be arbitrarily excluded from clinical trials.

The guidelines state that “with effective antiretroviral therapy, individuals with undetectable HIV viral loads by standard clinical assays should generally be considered eligible for a study should they meet all the other eligibility criteria of the trial.”8 “The hope is these new guidelines will ensure all [patients with] cancer who are HIV positive can achieve the same outcomes as those without HIV,” McNally says.

Articles

Nurses can take several steps &mdash; from stigma reduction to treatment considerations &mdash; to improve the care of patients with cancer who have HIV or AIDS.

Break Down Barriers to Cancer Care for Patients With HIV/AIDS

Delaware has the highest prevalence of triple-negative breast cancer (TNBC), an aggressive form of the disease that disproportionately affects women in the African American and Hispanic communities. Yet despite its high prevalence, African American and Hispanic women make up a small portion of women seeking genetic testing for the disease.

Nora Katurakes, MSN, RN, OCN, manager of Community Health Outreach and Education at Christiana Care’s Helen F. Graham Cancer Center and Research Institute’s Community Health Outreach and Education Program in Newark, Delaware, hopes to change that through a community outreach program called, “The Story of BRENDA.”

The BRENDA acronym stands for Breastfeed, Reduce consumption of alcoholic and sugary beverages, Exercise 2 ½ hours each week, Nutritious foods, Do not smoke, and Achieve a healthy body weight.

Katurakes is one of many oncology nurses across the country who works as part of a team that goes beyond caring for patients with cancer in a hospital or outpatient setting.

Realizing that many people are uninsured or have misconceptions or fears about cancer screening, these oncology nurses strive to teach community members about the importance of cancer screening and prevention.

To spread the word on TNBC, Katurakes and her team offered a “train the trainer” program last year to educate women so they could go out and disseminate the information in their communities.

“These trainers are ambassadors who lead education sessions at churches and other venues and talk about genetic testing, prevention, and BRENDA’s modifiable risk factors relating to triple-negative breast cancer,” Katurakes said in an interview with 

In addition to raising awareness on TNBC, Katurakes and her team conduct outreach on colorectal, lung, and other types of breast cancer. “We look at zip code areas that have limited access to health care and partner with churches, libraries, and community events,” Katurakes said. “We discuss prevention and screening and also talk to people about financial assistance if they are uninsured.”

Joining her on the outreach team are nurse navigators Charlene Marinelli, BSN, RN, OCN; Robyn Biehn, BSN, RN, OCN; Luisa Ortiz-Marquez; Lauren Childrey; Amanda Baggett; Teresa Wilde; Xiangfen Gu; Melissa Donovan, and the Healthy Latina Families Program.

“We have bilingual educators (Spanish and Mandarin) who work to eliminate any cultural barriers to cancer screening,” Katurakes says. “We also have a program called ‘promotoras’ promoters of health education, that emphasizes cancer screenings and prevention.”

The Community Health Outreach and Education Department has obtained grants through organizations such as the American Cancer Society.

Katurakes says the outreach team hopes to expand their services to reach more men with their messages of prevention and screening. “Many men avoid going to the doctor, so we’re looking at ways that we might be able to reach them in the community, perhaps through barbershops,” Katurakes said. “Lung cancer is the most frequently diagnosed cancer in Delaware, so we also want to do more outreach in that area.”

Katurakes says this could include educating people about smoking cessation programs and determining whether they might be good candidates for a screening called a low-dose computed tomography scan that can detect lung cancer at an early stage when it’s most treatable.

HELPING YOUNG PATIENTS WITH BREAST CANCER

As an oncology nurse navigator and breast cancer survivor, Deborah Kirkland, MPH, RN, BSN, CN-BN, of the Hoffberger Breast Center at Mercy Medical Center in Baltimore, Maryland, knows how important it is for women to know the signs and symptoms of breast cancer. Kirkland was only 32 when she was diagnosed with breast cancer 18 years ago.

“I had no family history of breast cancer,” Kirkland said in an interview with 

. “I felt a lump while performing a breast self-exam. Little did I know this simple practice would one day save my life.”

After her own experience, Kirkland became committed to educating other women about their cancer risks.

She founded the Young Survival Coalition of Greater Baltimore, a chapter of a nonprofit that provides support, education, and advocacy to women younger than 40 years who have been diagnosed with breast cancer.

“When I first started promoting breast cancer awareness and education outreach in my community, I targeted young women and African American women, who at the time, had a lower incidence of breast cancer, yet a higher mortality rate,” Kirkland said. “In communities where women were not getting screened, we would assess why and if due to transportation or lack of insurance, would connect them to resources to overcome these barriers.”

Kirkland also emphasized teaching women the importance of breast self-exams, especially for women younger than 40 years, who aren’t old enough for a mammogram. By attending health events at large corporations, local churches, and speaking to women’s groups, Kirkwood hopes to educate about the importance of conducting monthly breast self-exams and mammograms.

“Women often believe if they have no family history of breast cancer, they aren’t at risk,” Kirkland says. “But the truth is only 7% to 10% of patients with breast cancer actually carry a genetic mutation that increases their risk.”

1. Sims-Mourtada J, Ali-Khan Catts Z, Swanson P, Katurakes N. Engaging African Americans in breast cancer prevention strategies: a partnership between a community cancer center and the African American community in Delaware. 

Published Online: April 9, 2019. doi: 10.17140/CSMMOJ-5-e007.

Oncology nurses play a crucial role in educating the public about cancer risk and prevention.

An Ounce of Prevention: Nurses Educate Patients, Reduce Disparities Through Community Outreach

It’s not unusual for Carey S. Clark, PhD, RN, AHN-BC, RYT associate professor of nursing, University of Maine in Augusta, to have a patient ask if medical cannabis, also known as medical marijuana, might alleviate the adverse events (AEs) of cancer treatment. Many patients have heard anecdotal stories about how cannabis has reduced nausea, anxiety, pain, insomnia, and loss of appetite and are curious as to whether the plant-derived substance might work for them. As of August 2019, 33 states plus Washington, DC, have legalized medical marijuana, and 11 states and the District of Columbia have made it legal to buy and consume recreational marijuana.

“Nurses need to know the policies in their state concerning what patients can and cannot legally do around the use of medical cannabis,” says Clark, editor of the forthcoming 

Wolters- Kluwer Cannabis: A Handbook for Nurses.

In addition to her role as president of the American Cannabis Nurses Association, Clark has traveled across the country to help oncology nurses understand how they can best use cannabis as a palliative treatment, discuss cannabis ingestion and delivery methods, and note the proper dosage of cannabis for patients with cancer.

“With cannabis continuing to become legalized in more states across the country, there’s the need for oncology nurses to become familiar with the endocannabinoid system [ECS], the receptor system in the body that supports homeostasis and controls the central and peripheral nervous systems as well as energy uptake and immune responses,” Clark says.

“Patients have questions about medical cannabis use, and it’s important for nurses to have a working knowledge of the medical, legal, and pharmacological issues surrounding cannabis use.”

Although many oncology nurses and physicians are hungry for information on medical cannabis, the topic is traditionally never covered in nursing or medical school. The results of a University of Colorado Cancer Center study presented at the American Society of Clinical Oncology 2019 Annual Meeting show that while 73% of surveyed oncology providers believe medical marijuana provides benefits for patients with cancer, only 46% are comfortable recommending it. Major concerns included uncertain dosing, limited knowledge of available products and where to get them, and possible interactions with other medications.

Regardless of whether a state has approved cannabis for medical use, Clark says research shows that patients are turning to medical cannabis for help with chronic pain, depression, posttraumatic stress disorder, anxiety, spasticity among patients with multiple sclerosis, alleviating AEs of chemotherapy, and more.

Despite medical cannabis becoming more mainstream, Clark says a stigma still exists in many states and medical settings around its use. Some view medical cannabis as being in the same class of drugs as crack cocaine, while others remember “Reefer Madness,” the propaganda film that portrayed marijuana as a forbidden drug that might lead to psychosis and violence.

“There’s a lot of misinformation and fear that surround cannabis usage, and this makes it uncomfortable for many patients to discuss the topic with their provider,” Clark says.

A 2017 survey found that when patients aren’t able to obtain information about medical cannabis from their provider, they often turn to less-credible sources. The survey taken at a comprehensive cancer center in a state with legalized and recreational marijuana use found that although all patients preferred getting cannabis information from their provider, only 15% received that information. The majority obtained information from friends, newspaper/magazine articles, websites/blogs, or other patients.

“Nurses need to help end the stigma surrounding medical cannabis by supporting patients and being nonjudgmental, compassionate, and patient centered,” Clark says.

She cites how in July 2018 the National Council of State Boards of Nursing (NCSBN) published the NCSBN National Nursing Guidelines for Medical Marijuana, which outline principles of essential nursing knowledge as they relate to medical cannabis. They include a working knowledge of the current state of legislation of medical and recreational cannabis use, an understanding of the ECS, knowledge of safety issues related to cannabis use, and approaching patients without judgment regarding their treatment choices.

With the field of medical cannabis rapidly evolving, Judith Paice, PhD, RN, director of the Cancer Pain Program in the Division of Hematology-Oncology at Northwestern University Feinberg School of Medicine in Chicago, Illinois, encourages nurses to learn as much as they can. This knowledge, she says, will empower them to help patients make informed treatment decisions and determine if there are any drug interactions from other medications. It will also prepare nurses for other cannabinoid-based medicines that are currently being researched.

“In 2018, the Food and Drug Administration [FDA] approved Epidiolex [cannabidiol] for 2 types of epileptic seizures,” Paice says. “This might pave the way for patients to have access to more FDA-approved cannabis-derived drugs in the future.”

While interest in cannabis as a potential medication has increased, Paice says data are still lacking. “Cannabis research is rarely funded, but we’re starting to see more as researchers begin to look at whether medical cannabis can replace opioids or reduce opioid dependence or overdose,” she says.

In August 2019, Colorado became the third state, after New York and Illinois, to allow doctors to recommend medical marijuana for any condition for which they would prescribe an opioid. In addition, in Pennsylvania and New Jersey, patients with diagnosed opioid use disorder may be advised to use medical marijuana instead of opioids. The results of several studies show that cannabis use can lower opioid use in certain cases, but more research needs to be done in this area.

“Patients should be able to feel comfortable talking to their oncology doctors and nurses about cannabis as a potential treatment,” Paice says. “Even if we don’t have all of the answers, it’s important to keep an open mind and an open dialogue.”

Paice says it’s also important for nurses to know the different routes of administration for cannabis: oral, topical, and inhalation. Cannabis plant material can be smoked, vaped, ingested raw, or incorporated into edibles or beverages. Extracted cannabis oils can also be used topically and applied under the tongue. In addition, nurses need to learn the difference between tetrahydrocannabinol (THC), and the less-intoxicating cannabidiol (CBD).

Although THC and CBD are derived from the cannabis plant, THC is a psychoactive component that provides a “high” while CBD is a nonpsychoactive component that reduces inflammation. For this reason, Clark recommends that nurses advise patients using THC to “start low and go slow” with gradual increases until they reach a dosage that is controlling their symptoms.

“Having knowledge of medical cannabis can help nurses with patient education and coaching and help them to clarify their goals for medical use,” Clark says. “If a patient used marijuana recreationally in the past and had a negative experience, they may be cautious about trying cannabis again, but nurses can explain how to use it safely as a palliative tool without getting the feeling of being high.”

DISA Global Solutions. Map of marijuana legality by state. DISA website. 

disa.com/map-of-marijuana-legality-by-state

Glode AE, Wright GC, Leong S. Evolution of Colorado oncology providers on the use of medical marijuana. 

 2019;37(suppl 15):10511. ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.10511.

Perfam SA, Woodfield MC, Lee CM, et al. Cannabis use among patients at a comprehensive cancer center in a state with legalized medicinal and recreation use. 

Russell K, Cahill M, Gowen K, et al. The NCSBN National Nursing Guidelines for Medical Marijuana. 

ncsbn.org/The_NCSBN_National_Nursing_Guidelines_for_Medical_Marijuana_JNR_July_2018.pdf

Bachhuber M, Arnsten JH, Wurm G. Use of cannabis to relieve pain and promote sleep by customers at an adult use dispensary [published online July 2, 2019]. 

Medical cannabis use is legal in more than half of the United States. Nurses who are well educated on the topic can improve patient care.

Medical Marijuana: Nurses's Knowledge Can Improve Patient Care

Getting a cancer diagnosis is a lifechanging experience for all patients, but for those who live in rural areas, receiving appropriate care and treatment can pose additional challenges.

“Patients in rural areas have less access to specialists and are often diagnosed at a later stage in their disease,” says Karen Wickersham, PhD, RN, assistant professor at the University of South Carolina College of Nursing in Columbia. Wickersham discussed the differences between rural and urban breast cancer outcomes during her presentation at the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting, shortly after the organization announced a new task force aimed at reducing disparities and improving outcomes for patients with cancer and survivors who live in rural communities.

ASCO identified teleoncology as 1 of several areas where physicians and nurses could address broadband access, reimbursement policies, and other solutions that could improve remote access to cancer care. The National Cancer Institute projects that by 2026, the number of cancer survivors will rise from 15.5 million to 20.3 million2 and increased survivorship, combined with the rates of new cancer, will result in a major increase in the demand for cancer care.

“Digital health in cancer care is a very topical issue,” Wickersham says. “Telemedicine offers a way to improve access to specialists, screening, and prevention.”

Wickersham sees nurses working at the forefront of telemedicine and says that Australia has already successfully used nurses to deliver oncology care in rural areas. She believes Australia could serve as a model as the United States continues to develop more telemedicine programs.

Katherine Kim, PhD, MPH, MBA, assistant professor at the Betty Irene Moore School of Nursing at the University of California, Davis, has worked on a number of research projects exploring how telehealth can benefit patients in rural areas. One recent study examined how telehealth could be used for rural patients undergoing chemotherapy by monitoring symptoms and offering ongoing conversations and support surrounding their treatment.

“We developed software to be used with a smartphone or tablet, allowing oncology patients a direct connection to their care coordinator at the cancer center,” Kim says. “Nurse coordinators had the ability to answer questions or concerns that might arise between visits and provide patients with information on sleeping issues, nausea, and other concerns that often arise during chemotherapy.”

The telehealth software also allowed nurse coordinators to coordinate logistics for future oncology visits. “If [patients are] suffering from anxiety or depression, we might arrange for them to see a psychiatrist during their next visit,” Kim says. “By organizing in advance, they can make the most of their appointment, since they are traveling some distance to the cancer center.”

Another recent survey, Kim says, looked at how rural patients with multiple myeloma obtain information on their condition, how they choose their treatment, and what options might be put in place to help them with their decisions.

BRINGING CHEMOTHERAPY TO RURAL COMMUNITIES

At Sanford Cancer Center in Sioux Falls, South Dakota, patients from rural areas travel as far as 100 miles to receive chemotherapy. To help patients get treatment closer to home, Sanford Health launched a virtual infusion program last year.

“We utilize telemedicine technology to offer chemotherapy and other infusion treatments to patients at 3 virtual infusion centers located in rural communities,” says Susan Halbritter, CNP, of Sanford Cancer Center. “Medical staff at these centers provide chemo infusion treatments with oversight from a CNP [certified nurse practitioner] based remotely at the Sanford Health cancer center in Sioux Falls.”

During the 2 years leading up to the program’s launch, Halbritter says, the Sanford Health team trained staff at the rural centers on safety issues, standard operations, and prompt problem resolution, ensuring a seamless process. Only then were patients gradually transitioned from the main Sanford Cancer Center to a rural infusion center.

“One of our concerns was patients who might have an adverse reaction to their chemo infusion,” Halbritter says. “In the past, a nurse at a remote infusion center would stop the infusion at the first sign of a reaction and send the patient to the nearest emergency department just to be safe.”

Nurses can now call the Sanford Cancer Center CNP, who, using telemedicine, can observe the patient, listen to their heart and lungs, and determine when it’s safe to resume treatment. “In the past, an adverse reaction would have postponed their infusion treatment,” Halbritter says. “Today, there are very few treatments that can’t be completed. We work with rural nurses to intervene promptly in the event of an adverse reaction, get the patient back to their baseline, and continue their chemo infusion.”

ASCO announces new task force to address rural cancer care gap [press release]. Alexandria, VA: American Society of Clinical Oncology; April 10, 2109. 

asco.org/about-asco/press-center/news-releases/asco-announces-new-task-force-address-rural-cancer-care-gap

Cancer statistics. National Cancer Institute website. 

cancer.gov/about-cancer/understanding/statistics

. Updated April 27, 2019. Accessed July 2019.

Getting a cancer diagnosis is a lifechanging experience for all patients, but for those who live in rural areas, receiving appropriate care and treatment can pose additional challenges.
 

Oncology Nurses Help Bring Telemedicine to Rural Communities

Kelly Clegg, BSN, RN, CPHON - Photo credit: Kyle Kielinski

It’s a beautiful day at Happiness Is Camping (HIC), a free residential summer camp for children with cancer and their siblings, held in Hardwick, New Jersey. Children are laughing as they splash in the swimming pool, and a rousing game of beach volleyball is being played nearby.

Laura San Miguel, RN, PNP, who serves as the camp’s full-time summer nurse, smiles watching the campers play. She remembers a comment made by the camp’s longest non-nursing volunteer, a parent who lost a child to neuroblastoma and has battled stage IV breast cancer herself and who commutes from Florida each summer to volunteer. The mother put it best when she said, “Walt Disney was wrong, this is the happiest place on Earth,” San Miguel said.

Sleepaway camps, such as HIC, are held across the country throughout the year, offering pediatric patients and their siblings a chance to enjoy recreational opportunities, make new friends, and take a respite from hospitals and medical tests.

Although camp is a memorable rite of passage for all children, it represents unprecedented freedom for children and teens with cancer who have spent much of their lives undergoing medical treatments. Staffed by oncology nurses and other medical professionals in both paid and unpaid positions, the children who attend can have both a safe and memorable experience.

San Miguel first learned about HIC in 1995 while working as a staff nurse in pediatric oncology at Memorial Sloan Kettering Cancer Center in New York. She heard the camp was seeking volunteer medical personnel and decided to apply, and she has been volunteering at the camp ever since.

“HIC is a life-changing experience. The kids are amazing, and the gift of seeing the campers’ resilience and joy, their camaraderie and support, is priceless,” San Miguel says. “When I first started volunteering at camp, the nursing director told me I would get far more out of it than I ever put in, and she was right.”

Childhood cancer can be an isolating experience, but through recreation and other activities, these young campers are given the chance to gain independence, expand their horizons, and improve their self-confidence.

At HIC, the campers range in age from 6 to 15 years, and their siblings are invited to accompany them. Last year, San Miguel says the camp created a leadership program for 16- and 17-yearolds that runs over the course of 3 sessions.

“There was a 2017 study conducted by the University of Illinois that found adult survivors of pediatric cancer are 5 times less likely than their peers without cancer to get a job and 15 times less likely to go to college than their own siblings,” San Miguel says. “We created this program to combat these statistics and to teach life and communication skills, leadership training, and also science, technology, engineering, and math [STEM] workshops.”

San Miguel says children with cancer get so much out of the camps. She remembers meeting Adam, age 12, during her first summer as the full-time camp nurse.

“It was the first time he was going to be away from his family since his diagnosis,” San Miguel says. “He was nervous, and the high-dose steroids didn’t help. He was really homesick, but with our support, [he] talked himself through those first few days and had an amazing week. When his mom came to get him that Friday, she looked me in the eyes and said, ‘That was exactly what we all needed.’”

San Miguel says that experience showed her how camp also allows parents and caretakers time to reconnect while knowing their children are in a safe and supported environment.

“Adam came back every summer until he graduated into counselor age, and this will be his second summer as a counselor at HIC,” San Miguel says. “Camp is an amazing opportunity for the volunteer nurses (and doctors) to see our population out of a clinical setting. The experience has definitely made me both a better nurse and a better person.”

For nurses, summer camp provides the opportunity to see these children in a different light.

“At camp, we’re able to connect with the kids on a different level than in the hospital setting,” says Kelly Clegg, BSN, RN, CPHON, clinical supervisor, radiation oncology, Perelman Center for Advanced Medicine at The Children’s Hospital of Philadelphia (CHOP) in Pennsylvania. Clegg is celebrating her fifth summer working at Ronald McDonald Camp, located 3 hours from Philadelphia, in the Pocono Mountains. “I leave the camp each year feeling rejuvenated.”

“CHOP pays for oncology nurses and doctors to donate a week of their time to working at the camp every 2 years,” Clegg explains. “It’s considered a privilege to work at the camp.”

Clegg says nurses care for simple medical problems including bruises and scrapes and also oversee children who are using urinary catheters or feeding tubes or are on oral chemotherapy. Each year, Clegg says 7 nurses and 1 nurse practitioner staff the camp. Nurse volunteers should have oncology experience, the ability to provide routine and emergency care to campers, and a high degree of patience and stamina.

“Children must be in stable condition to attend camp,” Clegg explains. “We have some campers who are in remission that we’ve been treating since they were children, and now they’re attending camp as teens.”

Clegg says some campers have also received a terminal diagnosis and camp symbolizes their chance to take part in many activities their healthy peers have taken for granted.

“For 1 week, they’re just kids, not [patients with] cancer,” Clegg says. “Our staff will go that extra mile to help them enjoy activities they may have thought they could never do.”

Golf carts and wheelchairs are often used at cancer camps to ensure children can easily navigate the area, and activities such as zip lining, swimming, and canoeing are modified to ensure all campers can participate. Clegg says staff often improvise in order to help campers make the most of their experience.

“We have assistive devices for children who may be in a wheelchair or have difficulty walking to safely enjoy the zip line,” Clegg says. “There was 1 patient who couldn’t run and always wanted to fly a kite, so we put her in the back of a golf cart with her kite high in the air so she could finally have the experience.”

Since the camp also invites siblings to attend, Clegg says it serves as a loosely based support group where campers can meet other children and families who have undergone similar experiences. Nurses are also encouraged to participate in the wide array of camp activities. Clegg admits she’s ridden the zip line at camp as well as arts and crafts and canoeing.

“Working at camp is an experience that definitely puts you out of your comfort zone,” Clegg admits. “And the rewards nurses receive in return are 10-fold.”

Morgan Smizer, BSN, first learned about Camp Quality in Wichita, Kansas, while working in the Pediatric Unit at Wesley Medical Center in Wichita. After picking up a brochure on the camp, she called to volunteer and has now been working there for 3 years, the past 2 as the camp’s medical director. Smizer recruits 6 volunteer nurses each year to help throughout the week. Since some nurses don’t have the availability to be present for the entire week, she makes a staggered schedule that works for everyone.

“Our nurses are present for every activity, every meal, and all of the things that happen during the course of the day,” Smizer says. “I do a thorough history and medication assessment from each camper’s personal profile prior, and then we all collectively arrange and organize all the medications for the week, scheduling them to be given in the morning, and at breakfast, lunch, dinner, and bedtime.”

Although Smizer works in a pediatric intensive care unit, where she sees a lot of oncology patients, she says caring for them at camp is very different.

“I get such joy out of seeing these kids outside of the hospital setting, not connected to any tubes, wires, or hoses, and just being able to be kids,” she says. “I love the bonds they form with me, the other kids, and volunteers at the camp. This camp gives a whole new meaning to nursing.” Smizer says campers are also appreciative of the camp experience and that nurses consistently receive positive feedback.

“Most of the campers say this is the 1 thing they look forward to most every year, more than Christmas, more than their birthday, more than anything,” Smizer says. “They get to see old friends from years past, make new friends, participate in endless activities, and be reminded they are kids who aren’t defined by cancer.”

Camps for patients and their families bring happiness both to the campers who attend and the nurses who work there.

A Dose of Sunshine: Nurses Who Volunteer at Oncology Camps for Kids Learn a Different Aspect of Care

When Ana Adriazola, DNP, RN, AGPCNP-BC, graduated in 2017 from George Mason University in Fairfax, Virginia, with her doctorate, she knew her future was in oncology. So she applied to the Post Graduate Fellowship in Oncology Nursing program offered at The University of Texas MD Anderson Cancer Center in Houston.

“I wanted to immerse myself in the oncology field to ensure I had exposure to all aspects of treatment and care,” says Adriazola, who started working as a hospital secretary on the oncology unit at Virginia Hospital Center in Arlington. After earning her bachelor’s degree in nursing, she worked as a nurse in the same unit.

When the highly competitive MD Anderson program was launched in 2005, it was the first of its kind in the country. Today, similar programs exist, including the Seattle Cancer Care Alliance’s (SCCA) advanced practice provider fellowships in both oncology and bone marrow transplant for recent NP and physician assistant (PA) graduates.

The 1-year program combines classroom learning with hands-on experience. Nurse fellows also prepare to take the Advanced Oncology Certified Nurse Practitioner (AOCNP) exam to earn an AOCNP credential.

“I’ve had the opportunity to see how departments such as palliative care and psychology work as part of a multidisciplinary team in cancer care,” Adriazola says. “I’ve also learned about the policy side of oncology by attending a national oncology conference and authoring an academic manuscript to be published in a peer-reviewed journal.”

Each fellow chooses an area of specialization during the last half of the program. For Adriazola, that meant working in genitourinary (GU) care. At the end of the fellowship, she accepted a job in GU oncology at MD Anderson.

ADVANCED PRACTICE NURSES JOIN PHYSICIAN ASSISTANTS IN UNIQUE FELLOWSHIP

Shahin Carter, MS, PA-C, heard about the SCCA fellowship after graduating last year from the PA program at Heritage University in Toppenish, Washington. The 1-year comprehensive fellowship, held in conjunction with Fred Hutchinson Cancer Research Center and the University of Washington, launched in 2017 and offers 3 recent PA or NP graduates the chance to experience intense clinical subspecialty training.

“I started my fellowship in October and have completed rotations in hematology malignancies, palliative care, the pain clinic, and inpatient care,” Carter says. “I’m currently starting a 3-month rotation in outpatient care and bone marrow transplants.”

Carrie Anne Graham, MSN, ARNP-BC, who serves on the fellowship committee at SCCA, says the paid fellowship program was launched to train the next generation of PAs and NPs to provide highly specialized care in the oncology field. Graham notes that within the next decade, PAs and NPs are expected to play a critical role in meeting the projected demand for oncology services. A study commissioned by the American Society of Clinical Oncology predicts that the demand for oncology visits will increase by 48% by the year 2020, whereas the visit capacity is expected to increase by only 14%.

 Reasons include an aging population, a growing number of cancer survivors, and expanding treatment options that may require an increase in visit frequency.

“Other fellowship programs tend to be either PA or NP centric, but we wanted to take a teambased approach,” says Tanisha Mojica, ARNP, who also serves on SCCA’s fellowship committee.

FELLOWSHIP OPENS THE DOOR TO COMPLETE ONCOLOGY CARE

Carter learned how to work as part of a multidisciplinary care team to improve patient care. Mojica says the program is designed to help fellows learn leadership skills and gain confidence in their roles so they can hit the ground running and succeed in their jobs. “Our fellowship program removes the pressures of on-the-job learning that many NPs and PAs face when they accept a job directly out of graduate school,” Mojica says.

Also, Mojica adds, NPs who complete a fellowship or a residency program typically have an advantage over other advanced practice nurses when applying for jobs. Because the fellowship speeds up the learning curve, it also prepares them to take on different roles in oncology care and opens up opportunities for advancement and higher salaries.

“We have a nationally recognized clinical trial and transplant program at SCCA, so fellows are learning about cutting-edge treatments,” Graham says. “Our curriculum covers the different malignancy groups and offers didactic time, seminars with mentors, and a better understanding of hematologic malignancies.”

When devising their fellowship program, the SCCA committee worked with other hospitals that offered similar fellowship programs, Graham notes. “We modeled our fellowship in part after the MD Anderson program. We also worked with Seattle Children’s Hospital to learn about their combined APP fellowship program for PAs and NPs interested in pediatrics,” she says.

“We ask our fellows for feedback on the program on a weekly basis and how we might make adjustments to the curriculum and ensure there is a cohesive relationship between fellows and their mentors,” Graham says.

FELLOWSHIPS BENEFIT BOTH NURSES AND HOSPITALS

“Fellowships offer nurses an experience beyond what they learn in most graduate programs,” Mojica says. “They also benefit hospitals by preventing burnout among new nurses, reducing turnover, and improving hospital performance.” Carter admits that if not for the fellowship, she would have gone directly from graduate school to working on an oncology unit.

“The fellowship provides a supportive environment where I can be exposed to all the facets of oncology care,” Carter says. “I’ve had the chance to work as part of a multidisciplinary team and care for patients [with cacner] and their families. It’s definitely made me a better clinician.”

Vogel WH. Advanced practitioners in oncology: meeting the challenges.

. 2010;1:13-18. doi: 10.6004/jadpro.2010.1.1.2.

Nurses can “hit the ground running” in their careers thanks to fellowship programs.

Oncology Fellowships Prepare Nurse Practitioners to Take On Multiple Roles

Deborah Watkins Bruner, PhD, FN, FAAN. - Photo credit Bailey Davidson

Patients with cancer often struggle as a result of radiation side effects. Dorothy Pierce, DNP, NP-C, CRN, CBCN, CLT, an advanced practice nurse in radiation oncology at Rutgers Cancer Institute of New Jersey in New Brunswick, understands this well.

Approximately 60% of patients with cancer benefit from radiation, which is used either on its own or in conjunction with chemotherapy.

 But along with its ability to kill cancer cells and shrink tumors, radiation therapy can cause treatment- related adverse events (AEs).

As patient advocates and educators, Pierce says, radiation oncology nurses have the unique opportunity to not only care for patients undergoing radiation therapy but also get involved in related research that improves patient care. With the field of radiation therapy rapidly growing, there is a need for more nursing innovation, according to Pierce. “Many nurse practitioners [NPs] are becoming involved in radiation oncology, and some are working as coinvestigators on quality-of-life studies with radiation oncologists,” Pierce says. “Because nurses are at the forefront of patient care, they can help improve practice guidelines.”

Last year, Pierce and her colleagues examined best practices for preventing vaginal stenosis, which causes abnormal tightening and shortening of the vagina. The condition is a common AE of pelvic radiation therapy or brachytherapy treatment for uterine, cervical, and vaginal cancers and affects about a third of women who undergo the procedure.

Pierce conducted a phone survey in 6 New Jersey counties, talking with advanced practice nurses, registered nurses, and a brachytherapyfocused therapist, all of whom worked in radiation oncology programs. Healthcare practitioners were asked whether they counseled their patients on vaginal stenosis.

Survey results showed inconsistent practices in educating patients about the condition. Also, advanced practice nurses were underused in advising patients on best practices for managing and preventing vaginal stenosis, such as the use of vaginal dilators.

“[Although] not life-threatening, vaginal stenosis can result in long-term sexual dysfunction and painful vaginal examinations,” Pierce says. “Advance practice nurses are on the frontlines, helping to educate patients, pursue research opportunities, and implement quality improvement projects.”

Pierce began her own career as a primary radiation oncology nurse before going on to obtain her doctor of nursing practice (DNP) degree. “There are so many opportunities for nurses to make a difference in radiation therapy,” she says.

“Skin-care issues is an area where there are many inconsistencies in the guidelines, and [although] there are many creams that can help to relieve discomfort, they don’t prevent skin issues.”

Anxiety and depression are also common among patients who undergo radiation therapy, and this issue doesn’t receive enough attention, according to Pierce. “Patients often become depressed at the thought of their cancer returning,” she says. “Nurses play a critical role in identifying and managing each patient’s symptoms and ensuring they are linked to appropriate care.”

Deborah Watkins Bruner, PhD, RN, FAAN, senior vice president of research at the Winship Cancer Institute at Emory University in Atlanta, Georgia, is considered a pioneer in oncology nursing research and cancer clinical trials. Her areas of focus include sexuality after cancer therapy, patient-reported outcomes, and symptom management for patients receiving radiation therapy.

“Nurse research should lead to or influence evidence-based patient care guidelines,” Bruner says. “There’s a plethora of data in radiation therapy research, but we need to have more nurses implementing the information in real time to help patients better manage symptoms.”

Bruner’s career path took a turn toward research when she was working as a clinical nurse specialist in gynecologic nursing. “I became frustrated at the lack of evidence for managing symptoms of gynecologic cancer,” Bruner says.

“Historically, there has been little attention on how radiation therapy and other treatments can affect a woman’s quality of life and sexual function after treatment for ovarian, cervical, and endometrial cancers.”

After earning 2 master’s degrees, 1 in oncology and 1 in nursing administration, Bruner decided to return to school to earn her PhD and pursue a career in research. She is the only nurse to lead a National Cancer Institute-sponsored National Clinical Trials Network cooperative group, the NRG Oncology National Community Oncology Program.

Many possibilities exist for nurses to move into radiation oncology research and be involved in writing policy- or evidence-based research, Bruner says. “There’s a tremendous opportunity for clinical oncology nurses, nurse practitioners, and nurse researchers to educate cancer patients, manage their patients’ care plan, and educate them on potential [adverse] effects,” Bruner says. “Nurses can follow a career path from staff nurse to DNP to PhD and play a significant role in the discovery and implementation of practice guidelines.”

PhDs are research-based, while DNP degrees are focused more on clinical practice.

NEW CANCER TREATMENTS REQUIRE RESEARCH ON SYMPTOM MANAGEMENT

Over the past 2 decades, radiation therapy has been increasingly used as a treatment option for patients with cancer, underscoring the need for oncology nurses to understand its impact on patients. Radiation therapy can be administered in many ways: by external beam, in which a machine delivers treatment; internally (brachytherapy), via sealed sources of radioactivity placed near or within the tumor; and, less commonly, by liquids taken orally or infused through a vein (systemic infusion).

Robotic systems such as CyberKnife, an advanced lightweight linear accelerator, mounted on a robotic arm, delivers an intense focused dose of radiation to the targeted tumor. Another treatment, stereotactic body radiation therapy, involves very high doses of radiation using several beams of various intensities aimed at different angles to precisely target the tumor.

“The changes in the treatment are driving oncology nursing care from supportive care for patients receiving radiation therapy to the primary care providers during radiation therapy,” says Jessica Liu, RN a clinical research nurse at City of Hope in Duarte, California.

Additionally, advancements in radiation therapy are leading to changes in how patient care is managed. For example, Liu says, a new, FDA-approved radioisotope IV radiation therapy, Lutathera, is used to treat gastroenteropancreatic neuroendocrine tumors. Until recently, patients with this condition had few treatment options.

“In addition to recent developments in therapeutic areas, radionuclide materials are also being studied in the diagnostic field,” Liu says.

Liu cites many studies that combine radionuclide with diagnostic scans to determine if physicians can visualize the disease beyond what current technologies provide. Several studies combine radioisotope and machine-targeted radiation therapies to manage certain cancers and explore more promising disease treatments.

“Apart from the radionuclide approach, MRI [magnetic resonance imaging]—guided focused ultrasound is an existing technology used to treat certain cancers, and the results are encouraging,” Liu says. “This technology is being further developed to manage other types of cancers in different research phases.”

As radiation treatments evolve, the nurse’s role also expands to include both teaching and caregiving, showing patients how to effectively manage AEs. “Radiation exposure is a concern for many patients,” Liu says. “However, proper information and education before the therapy can help decrease patients’ anxiety.”

Many patients with cancer also undergo combined modality care, such as immunotherapy drugs used in conjunction with radiation therapy to treat advanced cancers. Nurses who work in radiation oncology will need to educate patients about the possible risks and symptoms associated with radioimmunotherapy, Bruner says.

Nurses are already on the forefront of patient care, and they can lead research, too.

Linda Childers