After 30 years of experience being an oncology nurse, Kristin Rupp, RN, OCN, BSN, “wouldn’t trade this profession for the world.”

“I know I’ve made the right choice,” she said in an interview with 

®. Rupp, a seasoned oncology nurse “with a wealth of experience and a heart of gold,” according to her coworkers, has spent the past 15 years at the Desert Regional Medical Center’s Comprehensive Cancer Center in Palm Springs, California, where she works full time in the oncology infusion suite and assists in the satellite clinics weekly. Although she is known to have fantastic managerial skills, her coworkers especially appreciate her heart for the patients and her knack for putting them at ease.

“She has been recognized locally by her peers and our hospital administration as a nurse of distinction,” said Timothy Tyler, PharmD, director of pharmacy, lab, and oncology supportive care at the Desert Regional Medical Center’s Comprehensive Cancer Center, “but most of all, she is loved by her patients and fellow clinicians as someone who goes beyond what is expected and is truly exemplary.”

Rupp said she was positively influenced by a variety of encouraging and inspiring mentors when she was still a novice oncology nurse. Today, she helps share her own experience with the next generation of nurses by having assisted at a nursing school in her community and by frequently volunteering to precept nursing students.

She said one of the most inspiring parts of preparing the next generation of nurses is witnessing their interactions with patients. “[They] see how amazing our patients are, how brave they are, what they are going through...[and say], ‘Hey, you know what? This isn’t so scary. And you know what? I’m going to think about oncology nursing.’ To me, that’s priceless,” Rupp said.

When students interact with patients with cancer, it can have a huge impact on them as they realize these individuals will have to live with their disease for the rest of their lives, and in some cases, may have to navigate end-of-life issues, Rupp said. However, she enjoys seeing how many of her students find themselves ready to tackle the world of oncology supportive care once they garner experience.

“I love the students,” she said. “I love their enthusiasm. I love [how] they’re scared and frightened [when they come in, but] when they go back to their class, they say, ‘Gosh, that was great.’”

Rupp recognizes that cancer care not only involves treating the disease itself, but also involves offering supportive care, managing adverse events, and often supporting the needs of the patient and the family caregivers. By imagining the situation from the patient’s perspective, she is able to try to understand what they might be experiencing.

“In a nutshell, I look at these challenges, and [I think] how would I want to be treated? Or how would I want my family members to be treated? We want to look at the situation as a whole and address the needs individually,” Rupp said.

She said one of the benefits of working at a comprehensive cancer center is the interdisciplinary team available to her. “We’re fortunate to have the services of our wonderful social workers, psychologists, [and] dieticians all coming together to address the needs of the patient.”

Rupp’s professional and personal experiences have even intertwined at times. Her career was significantly impacted through losing both her brother and mother to lung cancer. “As an oncology nurse, it hit home in my heart,” Rupp said. She explained that although she knows she tried to be the best nurse, sister, and daughter she could be, the loss continues to weigh on her. At the end of the day, she recognizes that this experience has strengthened her ability to connect with the patients and caregivers she supports.

“I can feel and know the hurt that folks are going through. I had been an oncology nurse for a long time, but when it gets into your inner circle…it’s a whole different story. I am sad I lost them, but [to see] how brave they were to have gone through what they went through—I see things in a whole different light because of it.”

Rupp said one of the biggest challenges she faced in the past year was helping patients overcome the feeling of isolation. “Think of how difficult it must be to go to your first chemotherapy appointment and not have your loved one with you. How scary,” she said. “Think about the nurse talking about all of this medication, [adverse] effects, things that can happen, and instructions of what to do at home. There’s only so much you can absorb if you don’t have that extra set of ears or extra set of eyes. Can you imagine that?”

Oncology nurses were forced to adapt during the COVID-19 pandemic, Rupp said. To do that, nurses needed to demonstrate a lot of patience. Overall, patience was key to surviving the pandemic, she concluded, adding that nurses had to use a lot of patience to provide the level of emotional support required by their patients.

Rupp herself adapted to the needs that COVID-19 had posed. “She jumped in and helped in our outpatient clinic, infusing monoclonal antibodies to those scared and frightened individuals who needed some reassurance that this was good therapy and could make a difference in preventing them from worsening. When the outpatient pharmacy at the hospital was able to procure COVID-19 vaccines early on for the community, she volunteered her time on numerous weekends, vaccinating the community with no remuneration other than a thank you,” Tyler said.

Upon reflecting over the past almost 2 years, Rupp describes excellence in oncology nursing as “when you can sit with someone, hold their hand, laugh, and cry. Talk about life and death, having the most intimate conversations without a thought of the pandemic.” Her advice to new oncology nurses is to know they’ve chosen the best profession in the world, and to go out and be the best oncology nurses they can be.

Articles

Kristin Rupp, RN, OCN, BSN, reminiscences about the experiences that made her the nurse she is today, and how she continues to pay it forward. 

Oncology Nurse Champion: Kristin Rupp

When nurses become burnt out, it’s a recipe for disaster, explained Stephanie Jackson DNP, MSN, RN, AOCNS, BMTCN.

“One of the biggest things that I tell the staff is self care [is important]. Whether you work in the inpatient setting where you’re doing three 12[-hour shifts], [or the] outpatient [setting] doing five 8[-hour] or four 10[-hour shifts], the biggest thing on those days off? Self care. Because It’s very hard to keep giving, giving, giving. Across the nation, we’re seeing short staffing, people leaving the profession because they have just seen so much in these past 17 months that they’re done,” she said.

Jackson, unit director at UCLA Health, spoke with Oncology Nursing News® about her experience as a unit director and how she encourages her staff to make self-care a priority in order to prevent burnout.

Jackson suggests “remembering that ‘why.’ Why you came into this, [and] what a privilege it is to be a part of these patients’ and their families’ journeys. But also recognizing when you’ve had enough, you’ve hit that wall, [and asking] is it time for vacation? What can I do for self care? Even if I can’t travel like I’m used to doing.

“But what is the most meaningful to them? Whether it’s family time, walks on the beach, exercising, things that bring them joy, so you don’t lose that, because when they walk back [through] the doors of that hospital or clinic, they have to have all hands on deck.”

Stephanie Jackson, DNP, MSN, RN, AOCNS, BMTCN, Oncology Nursing News co-editor in chief, comments on the importance of self-care for oncology nurses.

Nurse Recommends Self-Care To Be A Priority in Oncology Nursing

Patients with soft tissue sarcoma who experienced wound complications following preoperative and postoperative radiation therapy reported higher levels of anxiety and decreased physical function than those without these complications into the Patient Reported Outcomes Measurement Information System (PROMIS), suggest results from a study published in 

Clinical and Translational Radiation Oncology

The results showed that patients with wound complications were more likely to have a significant increase in anxiety (36.4% vs 8.3%; 

 = .020) and a significant decrease in physical function (57.1% vs 16.2%; 

 = .011) independent of the timing of radiation therapy.

“This study demonstrates minimum significant change thresholds to detect PROMIS changes in soft tissue sarcoma patients undergoing pre- and postoperative radiotherapy. As expected, more patients with preoperative radiation therapy than postoperative radiation therapy had wound complications, but patients with complications in both groups had worse anxiety and function at the completion of treatment compared with those that did not,” wrote lead study author T.M. Moon, MD, of Washington University in St. Louis, and coauthors, in the study publication.

Wide surgical excision and radiation therapy is the recommended local treatment for patients with high-risk soft tissue sarcoma of the extremities. However, the determination of whether to give radiation therapy pre- or postoperatively remains a challenge.

Preoperative radiation therapy can cause a reduced risk of late complications, such as fibrosis and joint stiffness. However, it can also cause an increased risk of significant wound complications that can reduce short-term postoperative function.

Furthermore, few studies in the modern era have evaluated patient-reported outcomes (PROs) during pre- and postoperative radiation therapy for soft tissue sarcoma, and none have used PROMIS, a scoring system which is favored over historical PRO measures and is endorsed by the National Cancer Institute.

Therefore, PROMIS scores were evaluated across perioperative timepoints for patients receiving pre- or postoperative radiation therapy.

All patients included in the study were over the age of 18 years who underwent surgical treatment for primary or repeat surgical resection of a malignant soft tissue sarcoma and had been evaluated in an orthopedic oncology clinic between July 1, 2015, and October 31, 2019.

Radiation therapy was given using 3D conformal or intensity-modulated radiotherapy. Preoperative radiation therapy was dosed between 50 Gy to 50.4 Gy in 25 to 28 fractions with a postoperative boost for positive margins, and postoperative radiation therapy was dosed between 60 Gy to 66 Gy in 30 to 33 fractions. No patients who received preoperative radiation were given postoperative radiation if the margins were positive after surgery.

Anxiety, depression, pain interference, and physical function PROMIS domains were collected preoperatively, immediately postoperatively, and following treatment completion.

Median scores were compared between groups using the Kruskal-Wallis test. The reliable change index (RCI) was used to determine the minimum important change in PROMIS scores and to compare scores between timepoints.

A total of 95 patients were included (n = 19 preoperative; n = 76 postoperative). No significant differences were reported in demographic, surgical, or pathologic data apart from gender between the preoperative (21.1%, female; 78.9%, male) and postoperative (46.1%, female; 53.9%, male) groups (

Incomplete PROMIS data left a total of 89, 93, and 53 patients eligible for analysis in the preoperative, immediate postoperative, and end of treatment cohorts, respectively.

Both cohorts had a significant decrease in function during treatment.

Anxiety scores were significantly lower at the posttreatment completion timepoint vs the other 2 timepoints (effect size −5.91; 

 = .0015). None of the variables were significantly associated with depression scores at any timepoint, and they were similar across timepoints.

The physical function scores were also significantly lower at the immediate postoperative timepoint vs the other 2 timepoints (effect size – 6.94; 

 < .0001). Physical function scores were significantly lower with increased patient age (effect size −0.14; 

 = .0163) and increased tumor size (effect size −0.44; 

Pain scores were significantly higher with larger tumor size (effect size 0.433; 

 = .0017) and during the immediate postoperative timepoint vs the other 2 timepoints (effect size 6.48; 

 < .001). All these effects were similar for the preoperative and postoperative radiation therapy groups.

The differences in minimum important change between the preoperative and postoperative radiation therapy groups was not significant for any PROMIS domain or timepoint.

The preoperative radiation therapy group had a significant decrease in pain interference (4.17 decrease; RCI = –1.699) and a significant increase in physical function (8.09 increase; RCI = 1.984) between the immediate postoperative and posttreatment completion timepoints. No other groups at any timepoint saw a significant difference at a 90% confidence interval for any of the 4 PROMIS domains.

Patients with tumors greater than 5 cm were also more likely to have a decrease in depression (27.4% vs 4.2%, respectively) between the preoperative and immediate postoperative timepoints. No other groups experienced a significant difference in increases or decreases, and there was no change in PROMIS scores.

Notably, no significant differences in PROMIS scores were reported between the 2 groups at any of the timepoints for any of the 4 PROMIS domains.

“The association of wound complications with worse anxiety and physical function at completion of treatment should be considered when making individualized treatment recommendations regarding the timing of radiation therapy,” concluded the study authors.

Moon TM, Furdock R, Rhea L, et al. PROMIS scores of patients undergoing neoadjuvant and adjuvant radiation therapy for surgically excised soft tissue sarcoma. 

. 2021;31:42-49. doi:10.1016/j.ctro.2021.08.008

This article was originally published on OncLive as “PROMIS Scores Provide Insight Into PROs With Radiation Therapy in Soft Tissue Sarcoma”

Patient Reported Outcomes Measurement Information System scoring suggested that wound complication was associated with more severe anxiety and decreased physical function in patients receiving radiation therapy for soft tissue sarcoma. 

PROMIS Scores Show Patients with Wound Complications Following Radiation Therapy Report Higher Anxiety, Physical Dysfunction

The role of a nurse navigator adds tremendous value to oncology care programs, shared Deidra Hamilton, MSN, RN, OCN, ONN-CG, navigation director/oncology services, Sarah Cannon, at a recent presentation at the Oncology Nursing Society Bridge virtual conference.

Her presentation, “Measuring the Impact of Nurse Navigation,” which was addressed to hospital administrators, current nurse navigators, and oncology nurses who might be considering a career shift towards navigation, highlighted the importance of understanding and quantifying the value of the oncology nurse navigator position.

Oncology nurse navigators, sometimes referred to as “ONNs” are professional registered nurses with oncology specific clinical knowledge. These individuals assist patients alongside all steps of their cancer care journey, offering education and resources to help promoted informed decision making and access to quality health and psychosocial care. Nurse navigators help patients, families, and caregivers circumvent barriers in the healthcare system.

“A nurse navigator is a medical system advocate and helps patients and their families understand each part of the cancer journey while compassionately supporting physical, emotional, and spiritual needs,” summarized Hamilton.

The value of a nurse navigator comes from their ability to identify and address potential barriers to care. A patient’s needs can also keep changing or evolving. For example, a patient may have transportation covered for 1 month, but find that she is unable to driver herself to treatment the following month. A nurse navigator can intervene by arranging transportation or providing useful resources for those patients.

“Navigators are often super detectives,” described Hamilton, about the tenacity of a nurse navigator, “always on the search for another resource to help their patients.”

Google can be an invaluable resource to nurse navigators. Hamilton explained that google holds a lot of great answers to difficult questions on copay assistance and other relevant factors in cancer treatment navigation. She shared that many nurses keep bookmarks of their favorite resources and also create word documents and excel sheets with links to valuable online resources. “The best nurse navigators are like a dog on a bone,” she said.

For new navigators, Hamilton encourages them to lean into the social work and case management colleagues at their facilities. She also emphasized that nurse navigators will often be the first to know some of the more intimate details regarding a patient concerns, “such as a patient wanting to make sure she has all of her hair because her daughter is getting married next month and doesn't want to look like a ‘cancer patient’ in the wedding pictures.”

“Ensuring that a patient's wishes are addressed also helps the patient be more compliant with their treatment plan,” she said. “Encouraging patients to talk about their treatment wishes and goals of care can not only help patients formulate questions for their providers, it can also help to promote advanced care planning that respects the patient's wishes.”

Because nurse navigation required such specialized knowledge, Hamilton recommended certifications such as ONN-CG, OCN, or CBC. Requiring these certifications within 2 to 3 years of hire can be a great way to incentivize new hires to acquire the skills they need to facilitate patient care.

According to Hamilton, nurse navigators are sometimes viewed as mythical creatures and it is not uncommon to hear “we don't know what they do, but they sure do get it done.”

Consequently, scope creep is an issue that nurse navigators often confront. Scope creep is “when works starts to extend or creep beyond what was originally agreed.” This typically occurs when there is not a clear definition or job description for the role.

She reminded the audience that “although being a jack of all trades is often seen as a compliment, in this case, when a navigator dabbles in work that isn't part of their scope, the dabbling pulls time away from helping more patients, which can have downstream negative effects.”

For navigators who feel that their role has become a little derailed, Hamilton advises taking an assessment of the situation by keeping a notepad and keeping track of all accomplished tasks for an entire week. “This will help to identify any navigation workflow and scope of practice issues,” she said. “Track the activities that the navigators are currently doing. Do these activities fit with the job description?”

Clearly Defining the Role of a Nurse Navigator at Your Institution

Unfortunately, the specific role of the navigator can sometimes have different understandings across different institution. This can have a negative impact if the patient doesn’t truly understand the meaning of a navigator. At Hamilton’s institution, Sarah Cannon, there is a clearly defined workflow of the responsibilities of an oncology nurse navigator.Navigators initiate a relationship with patients at diagnosis and continue to provide support throughout the trajectory of care, checking in at key benchmarks, such as treatment visits, or post operatively, and end navigation at survivorship or end of active treatment, whichever comes first.

She urged administrators to utilize the oncology nursing society navigator core competencies to establish clear standard operating procedures for the navigators and to help prevent the common “scope creep” that they often face.

A gap analysis can be a useful way for institutions to showcase the value of their program. For effective results, analyses should be conducted before the program begins, as well as at regular checkpoints following implementation.

The five basic steps of a gap analysis are as follows:

Identify the current state of the navigation program,

Identify and define best practice needed to reach the desired state of the navigation program,

Measure how close the organization is to achieving the desired state of the navigation program,

Conduct an analysis of the strength, weakness, opportunities, and threats. Conduct a stakeholder analysis, and

Develop and implement an action plan to achieve desired outcomes.

Hamilton provided an example of an institution that has 2d mammograms but no tomo mammogram units: an institution that 

conducting imaging but could potentially provide a higher level of service.

“After identifying gaps, which in this example includes the lack of a breast cancer navigator, the next step would be to identify and define the best practice needed to reach the disk

sired state of the navigation program,” she explained. “Our example facilities desired state includes a full-time disease specific breast oncology nurse navigator. Perhaps our next step is to analyze the breast cancer volume at our facility and to reach out to our stakeholders to discuss their thoughts. Once we have collected our data, we can develop an action plan to implement to achieve getting that full time breast specific navigator.”

While providing metrics might seem intimidating, they are a valuable resource for showcasing the various responsibilities a navigator might face daily, oftentimes metrics are able to effectively communicate to stakeholders why there is a need for an additional nurse navigator within a certain institution, Hamilton explained.

For nurses who are not familiar with gathering metrics, she informed audiences that the Academy of Oncology Nurse and Patient Navigators released a navigation metrics toolkit with 35 evidence-based metrics relevant not just to patient care, but that demonstrate the value and sustainability of the role. “It will walk you through quality standards, key stakeholders, as well as implementing the right metrics for your navigation program, all helping you to avoid that dreaded scope creep,” she said.

Furthermore, “navigators who do not collect and report even simple metrics may struggle to demonstrate the value of their program,” emphasized Hamilton. “They may find their roles diminished, or even questioned by administrators in the future. Demonstrating the value of navigation is part of the role and responsibilities of every oncology nurse navigator.”

Certain touchpoint metrics can include the number of times a navigator connects with a patient, increased patient compliance, and reduction of 30-day re-admissions. Patient satisfaction can be demonstrated with word-of-mouth referrals, as well as physician engagement, while growth can indicate that a maturation of the program and identification of patients. Improved timeliness can indicate superior program quality. No matter which metrics a program wishes to highlight, it is always useful to establish baseline data.

According to Hamilton, “the best metrics challenge your navigation program and drive practice change… When connecting to others, there are a few considerations to keep in mind. What is the story I'm trying to tell? Who is the audience? What are the key points in the data? Are there emotions involved? Is this idea affordable? Is there an ask? Do we need a policy or procedure?” she concluded. “Preparing a navigation dashboard to use to report out navigation outcome metrics helps to drive improvements, as well as elevates navigation important as well as elevates navigations importance to stakeholders.”

Hamilton D. Measuring the Impact of Nurse Navigation. Presented at: Oncology Nursing Society Bridge; Sept 9-16, 2021; Virtual. https://ons.digitellinc.com/ons/live/player/1438

Deidra Hamilton, MSN, RN, OCN, ONN-CG, recently presented on how cancer institutions can clearly define the role of a nurse navigator to prevent scope creep and use gap analysis and metrics to showcase the value of a navigator in their program. 

Defining and Quantifying the Oncology Nurse Navigator Role

Amelia Mercer, BSN, RN, CBCN, OCN, knew she wanted to work in oncology when she cared for a patient with cancer in her first role as a nurse.

Impressed with the level of knowledge, skill, and patience that it required to help this patient and his family, Mercer recognized that this profession was what she wanted for her career. Nearly a decade later, with experience working both inpatient and outpatient settings; across hematology, solid tumor, and palliative; and as the current nurse navigator for the breast team at Rush University Cancer Center in Chicago, Illinois, Mercer embodies the meaning of “oncology nurse champion.”

“Amelia is an amazing nurse and a true champion for patients,” said Ruta D. Rao, MD, medical director of Rush University Cancer Center. “My patients comment daily on the incredible support she gives them, for whatever their needs and questions are.”

Time management is one of the greatest challenges that Mercer faces in her role as a nurse navigator, she said. Her job is done entirely by phone, which means there is always a queue of patients requiring her assistance. Without seeing these patients face to face, Mercer prioritizes tasks by asking herself, “What do you need to do first? [Is one task] more urgent than another? Can this wait for an hour or two or even be pushed off till tomorrow? Does it need to be acted on right now?”

Moreover, part of her motto is that she never hesitates to reach out to her team as needed.

“I want to be able to give the patient the best knowledge….I always have people that I can turn to because I’m not going to ever know everything. That interdisciplinary team is truly what allows me to provide the best possible care for the patient,” said Mercer.

“She is a true team player,” Rao noted about Mercer. “She delivers outstanding care to the patient by working with the patient, [the] family, and the interdisciplinary team, including other medical professionals, as well as social workers, psychologists, and therapists.”

Mercer understands that cancer care is extremely complex and that a cancer diagnosis, even if a patient goes into active remission or shows no evidence of disease, represents a burden that will stay with patients their entire life. She is, therefore, always working to find better ways to help provide that much-needed comprehensive care.

Currently, she is enrolled in the Adult-Gerontology Primary Care Nurse Practitioner Doctor of Nursing Practice program at Rush University, with an anticipated graduation date of fall 2022. Although she had always wanted to return to school, Mercer credits a coworker who is a nurse practitioner and oncology nurse at Rush with inspiring her and being a role model for how the knowledge acquired through a nurse practitioner degree can be applied in the oncology setting. 

“It is always neat to just apply the knowledge directly as I learn and relearn things with refined understanding. I feel better equipped to educate my patients with what I know and feel as I am learning alongside them throughout their clinical course,” said Mercer.

Mercer adjusts her supportive approach in response to the patient’s specific needs.

“When I used to work on the inpatient side, I worked at a hospital [where] we donned protective equipment every time we went into a patient’s room…We just treated everyone as if they were infectious to protect everybody. And I remember kind of making the analogy [that] when you’re donning that gown to go into a room, you’re donning exactly what that patient needs you to be. Some people need you to be sarcastic and funny. Some people need you to sit and cry with them for a minute. Some people need you to be very quiet and respectful.

“So at the end of that patient encounter, you’re literally taking off that gown—you’re taking off what they have needed you to be, you wash your hands, you go to the next room, and you don the next persona and kind of emotional state that that next patient and those family members need you to be. So it’s very personal.”

Even in her current role as a nurse navigator—which is 100% phone work—Mercer still manages to adapt her supportive approach around what patients need.

“I’m having to gather a lot of that information over the phone, and I’m kind of gently easing my way into those conversations to figure out what is it that they need from me....[I]s it that humor? Or is it the sarcasm, you know, which I can turn on and am pretty good at. Of course, sometimes they just need it to be serious and more educational, or whatever the case is. So I think that the ability to kind of take all of those different [needs] on is a big piece of oncology care.”

Mercer advised oncology nurses to remember to also take care of themselves.

“Vacations, long breaks, [and] time you can give yourself [to] recharge your own battery [are] only going to make you stronger and better...and able to give more,” Mercer said. “And I know for us in the oncology field, it’s really hard to push that stop button because there’s always a need out there.

“But for us to be able to continue to keep going for these patients, it is vitally important that we actually stop and give ourselves a chance to breathe and to focus on our own health and energy and restoration so that we can come back for more.”

“When you’re donning that gown to go into a room, you’re donning exactly what that patient needs you to be.”

Oncology Nurse Champion: Amelia Mercer

Medical cannabis can help alleviate adverse events from cancer treatment, like vomiting, nausea, appetite loss, and sleeping difficulty, explained Eloise Theisen, RN, MSN, AGPCNP-BC. Unfortunately, due to a lack of federal standardization for medical cannabis, navigating the cannabinoid system can be a challenge for nurses and patients alike.

Theisen, current president of the American Cannabis Nurses Association (ACNA), recently spoke to 

 about the appeal of medical cannabis for patients with cancer, as well as transparency on cannabis use between patients and providers, and the direction she hopes to see in cannabis research in the coming years.

 What are some reasons that medical cannabis might be appealing to patients with cancer?

That's a great question. And it's a question I get a lot. Often when patients come to see me in my private practice, it's because they're looking for something to help manage their symptoms that are either related to the cancer treatment or the cancer itself. It may be because they're not getting the relief that they want from traditional therapies. They may be looking for something “more natural,” or they have family members who are insistent that they consider cannabis as a treatment option.

What are some of the advantages to cannabis as opposed to a more traditional treatment option?

We have limited research in some areas. The areas that we have really good data are with nausea and vomiting, appetite loss, chronic pain, [and] sleep. We're starting to see more research come out around chemotherapy-induced peripheral neuropathy. And one of the advantages of working with cannabis is you can really personalize the treatment plan to the patient's needs and goals. So, there's a lot of flexibility [and] there's a lot of individuality. It really allows patients to find a dose that may produce the best benefit with the least amount of side effects.

Do you believe that there might be some patients who might be interested in medical cannabis, but are nervous to ask their providers about it out of fear of the stigma?

Yeah, actually, that happens quite a bit. You know, I've been doing this work since 2013. And I've seen an evolution of how patients have come to cannabis. And there are still some that really struggle with the stigma; they're afraid that their health care provider will judge them or potentially no longer treat them if they are using it or want to use it. And we've found that, in some states, oncology providers are more favorable to their patients using cannabis, but many of them are unsure of dosages or side effects, or even different profiles to recommend to their patient. So many patients, unfortunately, end up looking to dispensary staff or “Dr. Google” or [even] friends or family to start their treatment. I always encourage [patients] to start the conversation with their health care provider, even if that health care provider doesn't know a lot about it. At least there's some transparency there.

For health care professionals looking for resources for dosage, what might be some good first steps?

Dosage is one of those things. It's very individualized and personalized, and it's an area of research that we're lacking. We don't have good double-blind, placebo studies to demonstrate what dosage should be applied for what condition.

At the American Cannabis Nurses Association (ACNA), our mission is to help educate health care professionals, particularly nurses, on the endocannabinoid system. We also have the National Council of State Boards of Nursing, who issued guidelines in 2018 on how to care for the patient using medical cannabis. We also have resources through the American Cannabis Nurses Association that we've vetted. It is challenging right now to find programs that are evidence based. And that's part of the work that the American cannabis nurses does as well. All of our companies that we work with are vetted to make sure that they're evidence based and [have] reliable information, because there's so much misinformation out there. We want to make sure that people get the right information.

Can you discuss some of the work that your organization does to try and obtain these evidence-based answers?

We've been around since 2010 and we are now about 1,500 members strong, predominantly in the United States, in all 50 states. We also have a couple members outside of United States, like the United Kingdom and Canada. And again, our mission really is to educate, collaborate, increase research, and partnerships. We do a lot of vetting around products, manufacturers, different sponsors, and education, to really ensure that, again, members are getting the most accurate and up-to-date information. We're also doing a lot of work to become an anti-racist organization, because a lot of the history in cannabis is rooted in racism, and prohibition as well.

We’re largely focusing on education because about 60% of our members consider themselves novices when it comes to cannabis. We really want to provide that foundational information to them so that they can become more empowered to talk to their patients or health care providers, lobbyists, etc. So, we're trying to educate our members, as well, on a lot of the political challenges out there around cannabis.

In states where medical cannabis is legal, what is the process like for patients to get that recommendation or prescription and then to get the actual product?

Well, it's not universal. It's not standardized. It really depends on what the state has determined to be a qualifying condition. We have 36 states, plus the District of Columbia, that have a medical cannabis program. And they vary. Some states like Oklahoma and California, that have medical programs [that] essentially allow anyone to qualify if that physician feels that their condition would benefit from the use of cannabis. And then we have other states like Texas, where they have a medical program that's incredibly restrictive, and only a few qualifying conditions. You can always check out the state website to determine whether somebody qualifies or not.

Then we have 18 states and the District of Columbia that allow for adult use, which also makes it [for] anybody over the age of 21 [who] can access it. But of course, most of those people are using it for symptom management because of an underlying health condition, but they're not getting medical guidance. So, it is challenging, overwhelming, and confusing for patients right now to navigate the space for sure.

What tips or advice would you give to these patients who are attempting to navigate the space?

Look for qualified health care professionals in their area that are knowledgeable in cannabis and the endocannabinoid system. There's a growing group of providers that have the specialized knowledge. I would really discourage them from using the internet to try to figure out what they need. There are some trusted sources out there are some nonprofit organizations that are dedicated to helping patients specifically like leaf411.org, and projectcbd.org. These are organizations that are consumer facing that are trying to help patients navigate the space and they do it free of charge.

Is there any research that you’ve seen that you are excited about?

We did have the National Academy of Sciences, Engineering, and Medicine report come out in 2017. They looked at over 10,000 peer reviewed studies. And they did publish their recommendations. They found conclusive evidence that cannabinoids are effective for chronic pain in adults. And they listed their report, you can also find where there's moderate evidence for sleep and other conditions. It also talks about some of the adverse effects, that you can get from using cannabinoids.

But I'm most excited to see the evolution of research. We are anticipating in the next few years, either for decriminalization or legalization at the Federal level, which will really open up our ability to research. We did see the DEA come out and say that they will start allowing researchers to use cannabis that is sold in dispensaries versus the cannabis that's grown by the government because there's a huge difference in the potency and the quality. So, we're going to start to really see, when patients are using these products from dispensaries, what the risks and benefits are of those products.

Should nurses be monitoring their patients for specific adverse events if they are taking medical cannabis?

It all depends on dosing. Cannabis has a biphasic or bidirectional effect. So low doses can produce 1 effect and a large dose can produce the opposite. So, you know, we always want to monitor our patients for adverse effects and whether or not they're receiving any benefits. Often, we will see many side effects, but we should always be monitoring for increased depression, increased anxiety, potential psychosis, or any suicidal ideation. Those are some of the adverse effects that we can see. There's also a condition called cannabinoid hyperemesis syndrome, where a chronic user can start having vomiting like cyclical vomiting. So those are other things that we want to monitor our patients for. And [also] make sure it's working because it's expensive, [and patients] don’t get insurance coverage for it. So, if the benefit is not there, we should really be encouraging them to discontinue their use.

And is there anything else that I haven't asked you that you feel would be useful for oncology nurses to know?

Our patients are using it. So, it's really important that we become educated on the endocannabinoid system so that we can help patients navigate this because right now, they really are relying on the internet or dispensary staff and we want to make sure that they get the most current, up to date evidence-based information so that they can be making informed choices and not potentially increasing their harm.

An expert weighs in on the advantages of cannabis treatment for patients with cancer, and how nurses can help patients navigate the cannabis-oncology space, in spite of certain research limitations.  

Cannabis May Help Manage Cancer-Related Symptoms and AEs, But Clinical Research Remains a Challenge

The ongoing phase 3 CheckMate-73L trial (NCT04026412) will appraise the safety and efficacy of nivolumab plus chemoradiation followed by nivolumab and ipilimumab (Yervoy) in patients with stage III non–small cell lung cancer (NSCLC) that is unable or not planned to be removed by surgery.

Oncology Nursing News® recently met with Sandra Duncan, RN, BSN, to discuss the potential ramifications of this trial for both nursing professionals and patients alike. Duncan is a clinical oncology research nurse who supports patients with cancer being screened or enrolled in clinical trials at the Georgia Cancer Center at Augusta University.

Although Duncan has worked as a nurse for 21 years at Augusta University, it wasn’t until recently that she made the transition to participating in clinical trial research. In this interview she also discussed how empowering and rewarding that career switch has been, as well as what her specific responsibilities have been in supporting the CheckMate-73L trial.

“I love it,” she began, at the beginning of the discussion. “I love what I'm doing. I feel like I am a connector for our potential subjects, working with our principal investigators and some other multi-specialty areas here at Augusta University with this particular study and, of course, the sponsor as well”.

 What has been your experience with the Checkmate 73L trial?

We had our site initiation visit in May of this year. We have yet to enroll the first patient, but our goal accrual here will be 4 patients over the next life of the clinical trial. I know we will meet that goal.

We have clinics on every Tuesday & Thursday. We also screen the patients that our other multidisciplinary physicians have, such as CT surgery, our radiation oncologist, and other medical oncologists. We actually screen their listing of patients. Since we have access to electronic health records (EHR), and since we can't meet all the patients, we screen based upon the eligibility and prescreen to see if they are potential patients at that time. … So, what we do is prescreen those clinics, and then we will, at that time, come up with any potential subjects before we actually have clinical or bring them in for clinic. So, we have an idea if that patient will meet eligibility requirements before being even approached at all.

We had 1 potential patient, unfortunately. I say unfortunately because when we got the referral, the patient already had received cardiothoracic surgery and was opted unresectable.

We use that as an educational piece to other multidisciplinaries and our tumor board to say, “This is the kind of patient that would have benefited from this type of clinical trial.” So, as we move forward, it's going to be continuing education, particularly because we have weekly tumor board meetings, where we talk about potential patients and re-education.

What are some of the unmet needs in NSCLC treatment right now?

I think what this particular clinical trial is simply going to do is give our patients more options. [If a patient says,] “I know I don't want surgery, then what else is out there for me?” That’s when we start discussing immunotherapy. I think that's one of the things that's needed for patients who do not opt to have surgery, many of them don't want to be in the hospital setting. This simply gives patients more options to have immunotherapy while doing radiation therapy than the 1-year maintenance treatment. That’s what is not available right now.

What are some of the challenges as that role of connecting the PI and all those moving components for a trial like this?

It is a communication challenge to make sure everybody receives the same message. So, I think for the efficiency and effectiveness, the challenge is ensuring that everybody hears the same message at the same time­­­–it is important to relay information to all parties at the same time. And that's not always possible. So therefore, as a study coordinator, you are constantly either emailing or calling and trying to make sure everybody knows who is on board: Did you check your emails? Did you do this? Where are we?

You are constantly trying to make sure all parties are on board. Because what you don't want is to have patients wait and delay their care. Being proactive and making sure that all parties are up-to-date is imperative, including the patients in the middle. We have to make sure in the middle of the circle that they have what they need because sometimes we have challenging cases. For example, one [case] we had recently, not for this clinical trial, a patient was in the waiting room for over an hour. [It is] just frustrating. So, our goal is to be as efficient as possible, and, therefore, improve the patient’s overall survival.

Do you think the results of Checkmate 73L trial could change how we approach this disease, particularly from a supportive care standpoint?

I do believe that. I think once the numbers or the data come back, it will reflect that this may become the overall standard of care for patients.

And what, in your opinion, will be the grand takeaway for nurses who are following this trial or are interested in this research?

For nurses that are [lung specialists], I think they they can become mouthpieces for family members or for the community, just to say, “Did you know this study exists?” - especially for the [patients] who do not opt to have surgery so other nurses can become spokesperson, if you will, indirectly, just helping to educate others about this clinical trial.

Sandra Duncan, RN, BSN, discusses her transition to clinical research, and what her responsibilities are like supporting the ongoing CheckMate-73L trial. 

The Role of a Nurse Coordinator in the CheckMate-73L Trial

Qualifying patients can now receive their chemotherapy treatments at home, thanks to the Cancer Treatment Centers of America’s pilot program, Oncology Clinic at Home.

Chevon Rariy, MD, medical director of endocrinology at Cancer Treatment Centers of America (CTCA) Chicago, and the Telehealth Program director for the CTCA, recently spoke to Targeted Oncology

, sister publication of Oncology Nursing News

, about patient eligibility criteria, how the nurse fosters relations between the oncologist and patient, and how telehealth was well positioned to make cancer care more accessible.She shared that “there’s no magic tool to increase access to oncology care, but telehealth is a tool which can be leveraged.”

The Oncology Clinic at Home program, which is currently based in Atlanta, Georgia, delivers oncology care to patients so long as they are in good enough health to not require a hospital visit, can tolerate their medication in an in-patient setting, have reliable internet service, own a mobile device such as a laptop or mobile, and have insurance policies which cover the treatments. The program currently treats breast, lung, prostate, head and neck, colorectal and some genitourinary cancers.

Videos

Chevon Rariy, MD, outlines patient eligibility criteria, and the alterations to the nurse patient relationship, as CTCA launches the novel Oncology Clinic at Home Program. 

Cancer Care More Accessible Thanks to Launch of Telehealth and In-Home Infusion programs

Systematic changes at the institutional level have the potential to decrease disparities in cancer incidence, care, and survival within Hispanic and Latinx communities. The incorporation of 

, as well as offering transportation assistance, meal vouchers, and parking validation, can significantly increase clinical trial participation within these communities.

Promotoras are bilingual, lay navigators within the community who have been trained by the institution on cancer screening and information. Their job is to help distribute clinical trial information within the community and help to establish trust in the health care system.

Rodolfo Gutierrez, MD, hematology and oncology specialist with Providence Saint John's Health Center Cedars-Sinai Medical Center, The Angeles Clinic, recently spoke to OncLive®, a sister publication of Oncology Nursing News®, about how 

 have positively affected 1 communities’ trial participation, as well as the importance of maintaining diversity across clinical trials.

Gutierrez works on many phase 1 trials at the Angeles Clinic and Research Institute that assess novel immunotherapies. He has recognized a lack of Latinx participation in these trials, which is an important issue because “if we don't have diverse participation in clinical trials, our results and outcomes are going to be very difficult to be generalizable to the entire population,” Gutierrez said.

There are multiple barriers that curb participation. Some obstacles include a lack of insurance or difficulty finding transportation to the university or cancer center with available trials.

Bias can unfortunately contribute to trial participation barriers as well. Studies have identified that biases from providers, researchers, and clinical research coordinators can result in the dismissal, or exclusion, of patients of lower socioeconomic status (such as the Latinx community members) for clinical trial participation, explained Gutierrez. Preemptively dismissing candidates is harmful to these studies because the inclusion of diverse patients helps to enrich and enhance the study results, he continued.

Furthermore, certain cancers, such as breast cancer, are more prevalent or are associated with worse outcomes within the Latinx community.

“For a variety of reasons, we are seeing patients being diagnosed with [cervical cancer at] more advanced stages, having worse survival, and higher incidence. Some of this has to do with education, background, and risk of certain infections for [the disease] like the human papillomavirus [HPV], but some of it is just access to care. Cervical cancer is a great example of this. A big reason why a disparity [exists] between Latina and Hispanic women and White non-Hispanic women [has to do with] access to screening. Now that we have a vaccine available for HPV, [it means that] access and utilization of these vaccines are a big part of why we have this discrepancy.”

One notable study evaluated a Latinx community in Texas and assessed their relationship with hematologic malignancies, specifically acute lymphoblastic leukemia [ALL], which is more prevalent within the Latinx community. Gutierrezobserved that, within the study, patients who lived closer to the Mexico/Texas border had worse overall survival (OS) outcomes than throughout other populations in Texas.

“If you really think about that,” he said, “it's probably because they don't have access to these cancer centers where clinical trials are available or higher-resource medical centers. The mere fact that where someone lives can have an effect on their cancer outcome [is important to be aware of].”

Health care providers can help minimize the gap through a variety of implementations. At Gutierrez’s own practice, the use of 

 has had a significant positive impact on community participation.

In addition, a recent study showed that the implementation of transportation assistance (30%), meal vouchers (21%), and parking validation (40%) significantly increased clinical trial participation within a Hispanic community local to the Wake Forest School of Medicine.1 Within 1 year, participation increased from 20% to 34%. This is a “significant jump [because of a] fairly simple [intervention]. Every cancer institute or every institute that has clinical trials needs to take a deep look into some of the easy changes that can be made to increase participation,” he said.

The Cedars-Sinai Medical Center has multiple task forces to promote engagement across Latinx, Korean American, and LGBTQ+ communities. Gutierrez is a member of the Hispanic task force. These forces seek to decrease differences in OS, incidence, and clinical trial participation.

has been a particularly positive experience. “I have participated in these training sessions with the promotoras and they had many questions that I was happy to answer,” he shared. “If we can educate them, this [knowledge] will be disseminated into the community in a trustworthy way. There is a lot of distrust in the medical system as a whole in certain groups—definitely in the African American and Latinx communities. Having these point people, mostly women, to serve as a starting off point has been helpful.”

The Future of Cancer Care in Latinx Communities

Future studies need to address the mutations besides 

that are more common in the Latinx community. There also needs to be a focus on how certain cancers, such as gastric cancer, differ biologically across the separate communities.

The University of California Davis Cancer Center is currently bringing light to some of the genetic differences in tumor biology in different subgroups. Medical professionals are optimistic that this knowledge can help with combatting racial disparities. Gutierrez said, “[the cancer space as a whole is] focusing more on precision medicine. By understanding [disease] biology better, our treatment options will grow. Hopefully, as a result, outcomes will also improve.”

Strom C, Weaver KE, Ruiz J, et al. Abstract A20: Hispanic patient navigation: an intervention to increase clinical trial participation. 

. 2018;27(suppl 7):A20. doi:10.1158/1538-7755.DISP17-A20

A version of this article was originally published on OncLive as “Examining Interventions to Increase Participation of Hispanic/Latinx Populations to Clinical Trials for Cancers”

While disparities exist in screening accessibility among the Hispanic/Latinx communities, the implementation of interventions have shown promising results in increased clinical trial participation. 

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