In the minds of Americans, there is no more trusted profession than nursing, according to global analytics company Gallup, which recently announced that for the 17th year in a row, nurses topped the list by a landslide.

Gallup conducts an annual poll in which Americans are asked to rate their perception of the honesty and ethical standards of people in certain professions. This year, 84% of respondents 

ranked nurses as “very high” or “high” in ethical standards

. That is 17% higher than then next-highest rated professionals—medical doctors.

According to Gallup’s website, “With the exception of 1 year, 2001, when firefighters were on the list after the 9/11 terrorist attacks, nurses have far outpaced all other professions since they were added to the list 2 decades ago.” 

Why do nurses think patients trust them so much? “Nurses are the first thing a patient sees when they wake up and often the last person they see before they close their eyes,” said Beth Eaby-Sandy, MSN, CRNP, thoracic oncology nurse practitioner, Abramson Cancer Center, University of Pennsylvania. “The nurse advocates for them if they are in pain, or having trouble breathing, or are depressed and cannot cope.”

Carol A. Porter, DNP, RN, FAAN, senior vice president and chief nursing officer, The University of Texas MD Anderson Cancer Center, added that the nurse’s role as an advocate also provides a strong foundation for 

. “Oncology nurses see patients and families at the most vulnerable times of their lives and the connection between them is sacred,” she said. “Nurturing an environment of openness and honesty and promoting these attributes among our nurses are vital to building a culture of trust.”

Eaby-Sandy agreed, adding that, “it is similar to a mother and a child relationship. A sick patient is vulnerable and entrusts their basic needs to the nurse who provides the care that they need.”

In addition, patients rely on nurses’ expert medical knowledge as well as their compassionate care, said surgical oncology nurse manager Abby Eserner, BSN, RN, Robert Wood Johnson University Hospital. “Nurses are very knowledgeable,” she said. “When patients figure out that they can ask questions and actually get real answers from nurses, that is comforting to them.”

In her more than 25 years of experience as an oncology nurse, Jean B. Sellers, RN, MSN, administrative clinical director, UNC Lineberger Comprehensive Cancer Center, has worked with countless patients, and knows just how important it is to develop 

. “A relationship cannot be built without [trust],” she said. “Trust requires the ability to put aside one’s own needs for another. It requires that we recognize fear, uncertainty, and loneliness in our patient’s face while acknowledging that we as nurses will also face this in our own lives.”

Sellers added that the patient-nurse relationship also requires a professional to enter the space willingly, meeting the patient where they are in the cancer journey. “We enter not to provide false hope, but only to listen and say, ‘I know you’re in a dark place. I’m here with you. You are not alone.’ The connection that occurs is powerful and heartfelt,” she added. “In those moments, we are able to help patients find hope, peace, and inner strength despite cancer. In doing so, we enable our patients to trust us to do what is right. This is the true essence of oncology nursing.” 

Lastly, oncology nurses see patients across the spectrum of their struggle with cancer, said Eserner. “We help people at the end of their lives, and that's not something that everyone can do. It's a real kindness to make sure that when there is nothing else to be done, and when the doctors have said, ‘This is it,’ and life is coming to an end, that there are nurses there who will sit by your side. We're there to make sure that you have dignity.”

Brennan M. Nurses again outpace other professions for honesty, ethics. 

. Dec. 20, 2018. news.gallup.com/poll/245597/nurses-again-outpace-professions-honesty-ethics.aspx. Accessed Dec. 27, 2018.

Articles

In the minds of Americans, there is no more trusted profession than nursing, according to a global analytics company called Gallup, which recently announced that for the 17th year in a row, nurses topped the list by a landslide.

Nursing Named Most Trusted Profession for the 17th Consecutive Year

In the United States, an estimated 10 million people are affected by 

. This is more than the number of people diagnosed with multiple sclerosis, amyotrophic lateral sclerosis, muscular dystrophy, Parkinson’s disease, and AIDS combined.

While this condition can be painful and debilitating, it is encouraging to know that there have been advancements in the treatment of lymphedema.

Julie Pederson, BSW, RN, OCN, CBCN, of the Baylor Scott & White McClinton Cancer Center in Waco, Texas, shared her excitement about some promising results of the study and procedures in the treatment of lymphedema at the 

 nursing track session in New York City, held on Nov. 7.

Lymphovascular bypass surgery, also known as “lymphaticovenous anastomosis,”

 is a relatively new surgery which is performed post axillary dissection by a trained plastic surgeon and only extends surgery time by approximately 45 minutes.

“The breast surgeon injects dye to identify the lymph nodes to in the axilla needing excision.  The plastic surgeon also uses a dye to distally inject the arm which identifies lymphatic vasculature that were lysed from the nodes,” Pederson explained. “A vein is selected and the plastic surgeon will anastomose the tiny lymphatic vessel to the vein allowing continued lymphatic drainage. So far this is showing efficacy in preventing lymphedema.”

However, Pederson acknowledged that it is early to know the lasting effects of this surgery. 

 has shown efficacy in helping people lose weight. In one small study, 12 obese women with a mean BMI of 38.38 received intervention strategies over the course of 3 months.

 Six went on a 12-week ketogenic diet, 4 did not, and two women dropped out in the middle of the study.

Among those on the ketogenic diet, the average weight loss was about 18 pounds compared with about 1 pound among those who did not go on the diet.

The most striking effect of the ketogenic diet was the volume of lymph fluid loss where 4 out of the 6 women who were on the ketogenic diet lost more than 1100 ml of lymphatic fluid, and others lost 183 and 467 ml. Comparatively, of those not on the ketogenic diet, only 1 woman lost more than 1000 ml of fluid, 1 lost 115 ml and 2 actually showed a small increase.

Pederson also touched on the use of autologous lymph node transplant which she said has a 30% to 50% success rate. “When it works, it works great, but there can be issues with lymph angiogenesis and engraftment to the new lymph nodes,” she added. “If it does not occur within a certain time frame, it might not prevent lymphedema.”

Lymfactin is clinical stage gene therapy that repairs damage of the lymphatic system.

 Lymfactin expresses the human growth factor VEGF-C, which is natural and specific for the development of lymphatic vessels, according to Herantis, the gene therapy’s manufacturer located in Finland. Based on preclinical studies, Lymfactin, transferred by an adenovirus vector, triggers the growth of new functional lymphatic vasculature in the damaged area, repairing the underlying cause of lymphedema. “If you just give VEGF-C, it will remain in the system for approximately 30 minutes. Lymfactin given distally, will stay in the system for about 2 weeks, which is effective in stimulating lymphatic vasculature growth and engraftment into the lymph node.” 

An inflammatory molecule called leukotriene B4 has been shown to play a part in inflammation in relation to lymphedema. Some studies have seen success 

, a non-steroidal anti-inflammatory agent. Aspirin and ibuprofen do not target leukotriene B4

and are ineffective in treating lymphedema, Pederson said.

Previous studies have shown that ketoprofen reduced the thickness of the patient’s skin in the affected limb by unblocking the molecular pathway that was causing the inflammation and restricting the body’s ability to repair its own lymphatic system.

“When using calipers, the normal skin measurement is about 1 to 2 millimeters. When you have a stage III -IV lymphedema, the skin fold can measure up to 38 millimeters. After taking ketoprofen for 4 to 6 months, measurements have decreased down to 3 to 4 millimeters of skin thickness.” Pederson said.  

Patients express concern about exercise inducing or worsening lymphedema. A small study conducted at Baylor Scott & White McClinton Cancer Center was designed to determine if exercise does increase lymphedema in women diagnosed with breast cancer who had axillary and/or sentinel node dissection. An exercise physiologist assessed 20 patients, determined fitness levels and designed exercise programs starting with 20 minutes of aerobic activity, escalating to 40 minutes. Core training and light resistance training with 2-, 3-, or 5-pound weights were also employed during the 6-week study.

Investigators used circumferential measurements, weight, grip strength, and bioimpedance measurements to assess the effects of exercise on patients’ affected arms. Results of the study indicated that exercise did not induce or increase patients’ lymphedema. Exercise had the benefit of increasing energy level and quality of life. Pederson noted that it was a small study, however, it could provide hope that, with more study and education, patients’ fears about exercise can be reduced, and they could reap the other benefits that exercise can provide.

Pederson J. Latest practices in lymphedema. Presented at: PER® 36th Annual CFS®; November 7-9, 2018; New York, NY.

Baltzer H, Winocour S, Harless C, Saint-Cyr M. Lymphaticovenous bypass: adaptations and lessons learned. 

 2017;5(6): e1328. doi: 10.1097/GOX.0000000000001328.

Keith L, Rowsemitt C, Richards L. Lifestyle modification group for lymphedema and obesity results in significant health outcomes. doi.org/10.1177/1559827617742108.

Keith L. Diet and lifestyle for lymphatic disorders: Implementing a ketogenic diet. Lymphatic Education and Research Network website.  lymphaticnetwork.org/symposium-series/diet-and-lifestyle-for-lymphatic-disorders-implementing-a-ketogenic-diet. Published August 28,2017. Accessed December 3, 2018.

Lymfactin® for lymphedema. Herantis website. herantis.com/pipeline/lymfactin-for-lymphedema/. Accessed November 30, 2018.

Rockson S, Tian W, Jian X, et al. Pilot studies demonstrate the potential benefits of antiinflammatory therapy in human lymphedema. 

. 2018;3(20):e123775. doi: 10.1172/jci.insight.123775.

Julie Pederson, BSW, RN, OCN, CBCN, provides an overview of developments in research on lymphedema treatments. 

Developments in Lymphedema Research

Oncology nurses must not only be aware of the adverse events (AEs) of 

, but they must also educate their patients—and their other healthcare providers&mdash;to recognize them as well, according to Massey Nematollahi, MScN, RN, CNS, OCN, CON.

Nematollahi, who runs the Immuno-Oncology Clinic at the William Osler Health Sys&shy;tem in Canada under the leadership of medical oncologist Parneet Cheema, MD, has developed practical tools and checklists to help nurses and patients 

recognize immune-related adverse events (irAEs)

At the clinic, nurses follow its 5 Pillars of Immuno-Oncology Toxicity Management—prevent, anticipate, detect, treat, and monitor&mdash;to provide optimal care. The onset of irAEs may be delayed after treatment, meaning patients may feel effects when they are at home, between treatments, without the close attention of nurses nearby, so patient education is vital. The Immuno-Oncology Clinic has created animated videos in at least 12 languages, patient handouts, and provider letters to ensure that AEs are recognized and treated quickly and effectively.

At the clinic, nurses give patients a flyer that features a graphic outline of a body, with explanations of each area where irAEs may appear, and what the warning signs may be. For example:

Lung-related warning signs include shortness of breath, chest pain, or new or worsening cough (with or without fever)

Liver-related signs include dark, tea-colored urine, yellowing of the whites of eyes, right-sided abdominal pain, and easy bleeding/bruising

Digestion-related irAEs may manifest as frequent, watery stools; dark, tarry, or sticky stools; nausea or vomiting; and pain or tenderness in the abdomen

Rashes, itching, mouth sores, or blistered or peeling skin are indications of irAEs as well. Hormonal effects include headache/dizziness, fatigue, weight loss or gain, sensitivity to hot or cold things, and heart palpitations. General swelling, muscle or joint pain, or muscle weakness are also signs that the patients should see a doctor.

The clinic also offers those being treated with immunotherapy a patient diary, designed to help them identify their baseline physical condition and to provide prompts for patients to consider whether that day may be different, and if so, how.

In addition, wallet cards can enable patients to provide quick information during potential emergencies when they need to communicate with medical providers quickly about their therapy and possible AEs. A small card provides the patient’s name, the immunotherapy drug the patient is taking, and brief bullets describing common AEs. In case of emergency, the card states: “The management of these immune-related (AEs) is specific and sometimes urgent. It absolutely requires coordination with the healthcare team that has prescribed the treatment.” Lastly, the back of the card provides the contact information for their oncologist’s office.

Raising Awareness Among the Entire Care Team

One challenge to recognizing and monitoring irAEs is that non-oncology medical providers—such as primary care doctors, emergency room staff, or specialists&mdash;may not recognize the patient’s symptoms as immunotherapy-related, as they may present with comorbidities that are treated by non-oncology physicians for specific conditions.

It is important that the patient’s multidisciplinary care team is educated about the possible effects of immunotherapy, and know when warning signs may necessitate a call to the oncologist. “The management of these toxicities requires the whole team to be involved,” Nematollahi said.

To help ensure that all of the patients’ providers are aware of the fact that they are receiving immunotherapy, and what that may mean, the clinic has developed a letter to send to them with a high-level overview of what they need to know. It also provides contact information for the patient’s oncologist, should the patient exhibit suspicious symptoms.

Follow-up with patients who are on immunotherapy is crucial, Nematollahi said. “Patients should be contacted on a regular basis,” she added. “[For] those who are on a combination of (immunotherapy), we have a call-back program weekly for at least 20 weeks to make sure they won't fall off the track.”  

She also advises that when it comes to irAEs, nurses should assume the worst. “Patients with diarrhea: if you think it is just diarrhea, it is not,” she added. “…You have to really be on the ball. That is inflammation of the bowel. It will get inflamed and may burst.”

Besides extra vigilance for known irAEs, nurses should be on the lookout for unusual symptoms, Nematollahi said, adding that not all irAEs are known yet, so observing and documenting unusual events must be considered part of comprehensive patient care.

Nematollahi M. Clinical pearls in managing immune-mediated toxicities. Presented at: 

Oncology nurses must not only be aware of the adverse events (AEs) of immunotherapy, but they must also educate their patients&mdash;and their other healthcare providers&mdash;to recognize them as well, according to Massey Nematollahi, MScN, RN, CNS, OCN, CON.

Immuno-Oncology Clinic Develops Tools to Aid irAE Recognition and Monitoring

Because of the risk for developing secondary malignancies, and given the association between smoking and cancer, all patients who smoke should be counseled about quitting, according to Linda Sarna, PhD, RN, FAAN.

However, Sarna—who is dean, professor, and Lulu Wolf Hassenplug Endowed Chair at UCLA Nursing, acknowledged that oncology healthcare providers often do not feel prepared to discuss smoking cessation with patients. To help improve oncology nurses’ knowledge and ability to raise the topic with patients, she presented a course on the subject at the PER

“Reducing tobacco use and exposure to second-hand smoke is critical to reducing unnecessary death and misery,” said Sarna, who is also one of the founders of 

, an organization designed to enhance nurses’ involvement in all aspects of tobacco control.

Cancer Risk and Smoking Cessation Benefit

Conveying cancer risk to patients is the first step: Almost 2 million cancer deaths per year are related to tobacco, including those of the lung, head and neck, stomach, bladder, kidney, pancreas, cervical, and colon, as well as leukemia.

 Among the people who have lung cancer, 80% of cases are caused by smoking.

Immediate and long-term health benefits of quitting smoking include improved circulation, increase in lung function, and reduction in risk of cardiovascular disease and stroke.

“After 1 year, the excess risk of coronary heart disease decreases to half of that of the continuing smoker,” Sarna said. “Risk of stroke reduces to half of those who never smoked at 5 years. That's pretty profound.”

After 15 years of being tobacco-free, the risk of cardiovascular disease is similar to that of people who have never smoked at all. In addition, though risk of lung cancer persists for a lifetime among people who have a history of smoking, it will be significantly reduced in those who are able to quit.

 Those who quit are also likely to reduce their risk of cancer recurrence, treatment complications, and survival.

Because tobacco dependence includes both physiological and behavioral elements, patients must be supported with treatment that addresses each. Pharmacotherapy solutions can treat the physical effects of withdrawal, while behavioral therapy can address the habit that is part of a smoker’s daily life.

A key tool that nurses can use to follow these updated guidelines for advising patients about smoking cessation is a 5-step process called the “5 As”:

patients about tobacco use at every visit. Electronic health records can be useful in reminding nurses to ask about a patient’s smoking habits.

 patients that quitting is one of the most important things that they can do.

 their willingness to quit. Sarna said most people who smoke do want to quit, but some may not be ready. If they are not, nurses can try and help motivate the patient to want to quit at a later date by providing information about the benefits of quitting.

 patients with a quit plan. Sarna recommended for nurses to set a quit date, ideally within 2 weeks, as an initial goal, and then, to advise them to remove tobacco products from their environment, and discuss anticipated challenges, including nicotine withdrawal. Also, she added, nurses should recommend total abstinence, and encourage the use of an over-the-counter nicotine patch, gum, or lozenge; or give a prescription for varenicline, bupropion SR, nicotine inhaler, or nasal spray, unless contraindicated. Nurses can also recommend the toll-free quit-line, 1-800-QUIT NOW (784-8669), the national access number to State-based quit-line services; or refer to 

 for government-approved smoking cessation information and aid.

 for follow-up. Nurses should schedule visits with the patient to review progress.

Helping Smokers Quit: A Guide for Clinicians

,” summarizing and explaining the 5 As, is available from the Agency for Healthcare Research and Quality; US Department of Health and Human Services Public Health Service. A valuable chart at the end of the document offers suggestions for the clinical use of medications for tobacco dependence treatment. It lists common FDA-approved medications, specifies precautions and contraindications, identifies adverse events, and explains dosage duration and medication availability (whether it is a prescription drug or available over the counter).

Sarna noted that a growing number of smokers are using e-cigarettes, which are not FDA-approved smoking cessation tools, to try to quit smoking, but end up using both cigarettes and e-cigarettes, increasing their nicotine intake.

“If your patients are trying to quit with e-cigarettes, first of all, congratulate them that they are trying to quit. Let them know about the evidence-based, FDA-approved medications. Encourage them, if they are using e-cigarettes, not to have dual use of both smoking and e-cigarettes, and to try to get off those things as quickly as possible,” she said.  

Talking to patients about smoking cessation is part of patient education, which is an important element of the nurse’s role in cancer care. Learning how to comfortably broach the topic, discuss it confidently, and provide patients with resources to quit could give patients a better chance at improved health and survival.

“A growing number of studies support the efficacy of the oncology health team, in terms of helping people quit…. We really need to change practice—prevention and cessation are interventions that are central to what we need to do as oncology nurses.” 

Sarna L. The importance of tobacco control in oncology: a nursing perspective. Presented at: PER

Cancer. World Health Organization website. 

who.int/en/news-room/fact-sheets/detail/cancer

. Published September 12, 2018. Accessed November 27, 2018. 

How to Help Patients with Cancer Quit Smoking

Although few statistics are available to assess how patients with cancer are affected by prescription opioid use, a recent study found that 70% of patients with cancer use opiates after radiation, according to a poster presented at the ASCO 2018 Palliative and Supportive Care in Oncology Symposium.

Moreover, the researchers found higher rates of use among patients who received chemotherapy, actively smoked, used alcohol, or were diagnosed with head and neck cancer, while cancer survivors who were treated with radiation for more than 4 weeks had high rates of opiate use 1 year after finishing treatment.

Opioids are commonly prescribed for the management of moderate to severe chronic pain experienced by patients undergoing treatment for cancer, yet according to ESMO clinical practice guidelines published in the 

 Scott Gottlieb, MD, Commissioner of the Food and Drug Administration (FDA) acknowledged that the FDA faces a difficult task in “striking the right balance between reducing the rate of new addiction while providing appropriate access to those who need these medicines.”

“We don’t know how many cancer patients died from prescription opiates and there is little published data about their prescribing patterns,” wrote the researchers, from the University of Texas Southwestern Medical Center (UTSW) in Dallas.

To add to the body of knowledge around opioid use in patients with cancer, the researchers studied data from 6424 patients with lung, breast, and head and neck cancer recorded in the UTSW tumor registry from 2009-2016. They analyzed prescription data for these patients, who were undergoing therapy including radiation. They assessed demographics, cancer type, treatment modality, concurrent medicines, substance abuse history, and survival.

The researchers saw widespread use among genders, with 76% of 2112 men and 67% of 4307 women who reported to use these medications, of which 8% had 3 or more different opiates prescribed. Hydrocodone was the most commonly used (67%), followed by morphine (12%), fentanyl (9%), oxycodone (7%), and hydromorphone (6%).

In total, 18.7% of women and 15.9% of men received gabapentin. A neuropathic pain reliever, gabapentin is commonly prescribed to those addicted or at risk of addiction to opioids. Lately, gabapentin has increasingly been found in people who have overdosed on heroine or prescription opioids,

 so although it is not an opioid, scrutiny of its use is growing.

Of the 850 patients who received chemotherapy and radiation, 696 required opiates (82%) compared to 68% of those who did not receive chemotherapy (3807/5574; 

<.0001). Patients with head and neck cancer reported the highest rate of opioid abuse (77%) compared with those with breast (65%) or lung cancer (70%).

Lastly, the researchers found that of the 2643 patients who used alcohol, 2001 received opiates (76%) compared to 67% of those who did not use alcohol (n = 3145;

 <.0001). Among active smokers (n = 1366), 76% used opiates versus 67% of those who never smoked (n = 2815; 

Westbrook KA, Ahn C, Khan SA. Prevalence and usage patterns of opiates in patients with lung, breast, and head and neck cancer. Presented at: the ASCO 2018 Palliative and Supportive Care in Oncology Symposium, November 16-18, 2018; San Diego, Calif.

2018;36(suppl 34). Abstract 120. meetinglibrary.asco.org/record/167120/abstract. Accessed November 18, 2018.

Fallon M, Giusti R, Aielli F, et al. Management of cancer pain in adult patients: ESMO clinical practice guidelines. 

. 2018;29(suppl 4):iv166—iv191. doi: 10.1093/annonc/mdy15 esmo.org/Guidelines/Supportive-and-Palliative-Care/Management-of-Cancer-Pain-in-Adult-Patients. Accessed November 18, 2018.

Gottlieb S. Addressing needs of patients while stemming the tide of the opioid crisis. FDA website. fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm612779.htm. May 14, 2018. Accessed November 18, 2018.

Vestal C. Abuse of opioid alternative gabapentin is on the rise. Pew Charitable Trusts website. pewtrusts.org/en/research-and-analysis/blogs/stateline/2018/05/10/abuse-of-opioid-alternative-gabapentin-is-on-the-rise. Published May 10, 2018. Accessed November 18, 2018.

Although few statistics are available to assess how patients with cancer are affected by prescription opioid use, a recent study found that 70% of patients with cancer use opiates after radiation.

Prescribing Patterns of Opiate Use Among Patients with Cancer

The Food and Drug Administration (FDA) expanded the approval of eltrombopag (Promacta) in combination with standard immunosuppressive therapy (IST) to include first-line use in newly diagnosed adult and pediatric patients aged 2 years and older with severe aplastic anemia (SAA), according to Novartis, the agent’s manufcaturer.

"Patients with SAA sometimes do not respond to the current treatment standard of IST," Phillip Scheinberg, MD, head, Division of Hematology, Hospital A Beneficência Portuguesa de São Paulo in Brazil, and previously with the National Heart, Lung, and Blood Institute (NHLBI), said in a press release.

"With this approval, physicians now have an option to add Promacta to the standard IST in a regimen that has demonstrated significant overall and complete response rates upfront in SAA and reduce the numbers of those who are unresponsive to initial therapy," he added.

The approval was based on a Novartis analysis sponsored by the NHLBI Division of Intramural Research Program and conducted under a Cooperative Research and Development Agreement.

Study findings showed that eltrombopag plus standard IST treatment resulted in a 44% complete response (CR) rate in patients with definitive IST-naïve SAA at 6 months, a 27% improvement over the use of standard IST alone. The overall response rate (ORR) at 6 months was 79% (95% CI, 69%-87%).

The most common adverse events included abnormal liver function tests, rash, and skin discoloration including hyperpigmentation.

The FDA also granted a breakthrough therapy designation to eltrombopag, an oral thrombopoietin receptor agonist, for hematopoietic sub-syndrome of acute radiation syndrome (H-ARS). The research for this designation is being conducted under contract with the US Department of Health and Human Services' Biomedical Advanced Research and Development Authority to potentially use the agent following radio/nuclear threats, specifically to treat patients exposed to myelosuppressive doses of radiation.

FDA approve Novartis drug Promacta for first-line SAA and grants Breakthrough Therapy designation for additional new indication. Novartis website. novartis.com/news/media-releases/fda-approves-novartis-drug-promacta-first-line-saa-and-grants-breakthrough-therapy-designation-additional-new-indication. November 16, 2018. Accessed November 18, 2018.

The Food and Drug Administration (FDA) expanded the approval of eltrombopag (Promacta) in combination with standard immunosuppressive therapy to include first-line use in newly diagnosed adult and pediatric patients aged 2 years and older with severe aplastic anemia.

FDA Approves Eltrombopag Combo as First-Line Treatment for Severe Aplastic Anemia

The clinical trials program at the Lehigh Valley Cancer Institute (LVCI) grew exponentially in a short period of time. A great problem to have, certainly, but challenging to the organization.

To ensure the successful absorption and growth of new trials, two nurses drove an initiative to reorganize LVCI’s framework of their current disease management teams. They incorporated clinical trial oversight and responsibility into disease management teams to improve organizational processes, encourage innovation, and ensure high quality care.

In 2010, LVCI, which is part of the Lehigh Valley Health Network (LVHN) in Eastern Pennsylvania, participated in pharmaceutical-sponsored studies and experienced great success with immunotherapy trials, so its pharmaceutical portfolio expanded quickly. In 2015, LVHN joined the Memorial Sloan Kettering (MSK) Cancer Alliance, and in 2016, it joined the Michigan Cancer Research Consortium. As a result, LVCI’s access to clinical trials boomed. Suddenly it had access to more than 100 trials.

In 2015, to accommodate the rapid growth of their cancer program, LVCI formed disease management teams comprised of representatives from medical, surgical, and radiation oncology, as well as pathology and radiology. The teams included nurse navigators, clinical nurse specialists, genetic counselors, representatives from Cancer Institute administration, and clinical nurses, while other related physicians sit on teams as needed. The teams worked on setting up processes and guidelines.

After a year of successfully orchestrating disease management teams, LVCI conducted a disease management team needs assessment. What it found was that access to an abundance of trials does not necessarily mean focused care is given to the patients who need it. With numerous locations spread across Eastern Pennsylvania, LVCI needed to improve its ability to:

Increase recognition of potentially eligible patients

Select a more appropriate choice of trials based on resources

Match the choice of trials to the population in the community

Educate staff about new and current trials

Morgan Horton, BSN, RN, CCRC, supervisor, Oncology Clinical Trials, LVCI, helped identify these areas for improvement. “We found that we were opening trials that weren't suitable for our patient population,” she said during a presentation at the Association of Community Cancer Centers 35th National Oncology Conference. “The communities are obviously very different between hospitals, so we need to select trials that suited our own community and pick accordingly so that we could best treat our patients.”

As a result of the assessment, in 2016 LVCI began to include the clinical trials team in the monthly disease management team meetings.

Megan Derr, MSN, RN, AOCNS, CMSRN, oncology clinical nurse specialist at LVCI, facilitates each of the 6 disease management teams, which include teams based around breast, thoracic, head and neck, skin and soft tissue, genitourinary, and gynecologic cancers.

"The disease management team’s role is quite expansive and ever-changing," Derr said. "The teams meet monthly per disease site to review best-practice guidelines and compare them to our practice patterns. If discrepancies are noted, dissemination and action plans may be created. They also review changes to NCCN and ASCO guidelines to ensure that we are staying current in the care that we are providing our patients."

As part of the MSK Cancer Alliance, they also meet with the MSK disease management team to discuss treatment guidelines and share recommendations. Additionally, the disease management teams focus on quality assurance and clinical process improvement.

"We have found that those doing the work are boots-on-the-ground, first-contact-with-patient clinical team members,” said Megan Derr, MSN, RN, AOCNS, CMSRN, oncology clinical nurse specialist at LVCI. “(They) truly are the ones that find the areas needing improvement, and our (disease management team) agenda really does tend to bubble up from the bottom, from the people in our clinics, rather than from top-down, with management making the agenda." 

During the presentation, Derr distinguished between the disease management teams and multidisciplinary care clinics. Patients visit the health network’s multidisciplinary care clinics and will see multiple providers in one venue to discuss and plan their treatment. Meanwhile, disease management teams are not a venue for discussing individual patients’ specific cases, as their scope is care coordination and improvement as a whole.

“At each (disease management team), new studies are reviewed for feasibility: Can we do this study? Do we have enough chair time? Do we have the right stains? Do we have the right kind of imaging? Do we take care of patients that really need this trial?” questioned Derr.

“The trials are also reviewed for team buy-in,” she added. “Do our providers feel like this will benefit their patients? Are they going to accrue to it? And are they comfortable accruing to all arms of the study? And, how to we plan to disseminate this study to our cancer institute, and to our entire network? Who needs further education, and how can we best reach them?”

Staff education is another important task in ensuring appropriate growth. Through shared spreadsheets and improvements to their electronic medical records, LVCI has enabled more transparent sharing of information about trial availability and patient eligibility. Derr and Horton have developed a CE-accredited research education and case studies course as well.

In one year, the integration of clinical trials under the auspices of the disease management teams accelerated clinical trial accrual significantly. Accrual to treatment clinical trials increased from 52 patients in 2016 to 93 in 2017. “In addition, overall clinical trials accrual totals increased from 287 to 347. These accruals included clinical trials in areas such as quality of life, registries, tissues and blood collection, in addition to treatment clinical trials,” Horton said. 

Derr said one message from the disease management team project came through loud and clear: “An oncology clinical nursing model facilitates high quality and personalized care.”

Lastly, Derr urged clinicians working in teams to consider being open to constructive criticism. “Feedback from key stakeholders is critical to determining necessary change for positive process improvement and should be encouraged,” she said. “It's never easy to hear what you can be better at … but if you take feedback from your key supporters, it really helps to make innovative change and move your program in the right direction.”   

Derr M, Horton M. Cultivating change: A disease-specific, team-based approach to improving oncology clinical trials. Presented at: Association of Community Cancer Centers 35th National Oncology Conference; October 17-19; Phoenix, AZ.

The clinical trials program at the Lehigh Valley Cancer Institute grew exponentially in a short period of time. A great problem to have, certainly, but challenging to the organization.

Building Disease Management Teams to Harness Clinical Trial Growth

Sexuality after cancer is an under-discussed topic between healthcare providers and patients, and nurses especially have an important role to play in raising the subject with patients, according to Anne Katz, PhD, RN, FAAN.

Katz, a clinical nurse specialist and certified sexuality counselor at CancerCare Manitoba, has made it her mission to educate healthcare providers about talking to patients about the effects of cancer on sexuality. At the PER

 in New York City, she spoke to nurses about why and how these conversations should occur.

Talking about the effects of cancer on sexuality is important to patients and their partners. However, it is not just about sex, Katz said, adding that sexuality involves ideas about body image, self-worth, comfort, and identity.

Yet, provider barriers—such as providers’ lack of knowledge, and in turn confidence; avoidance of assessment and interventions; conservative attitudes; embarrassment; fear of offending patients; denial of responsibility; institutional issues; and lack of awareness around guidelines–still exist. According to a 2011 study, 45% of individuals with cancer who participated in the study had never received information from an oncology provider about how cancer would affect their sex life.

“This is malpractice.... We are failing our patients,” Katz said, adding that some oncology providers may see their role as just helping to cure patients of cancer, but this is in fact doing a disservice to their patients. Cancer affects many aspects of a patient’s life. Therefore, it is the job of the oncology nurse to be aware of all the sexuality-related effects, identify the issue, and help the patient through their journey.

Throughout her career, Katz has heard all types of excuses from nurses as to why they don’t talk to patients about sexuality and cancer. “Probably the number one reason nurses don't talk to patients about sexuality is: ‘I don't know enough about it. What if the patient asks me a question and I don't know the answer?' I think that's a terrible excuse,” Katz said, “because we are always asked questions that we don't know the answer to.”

Other excuses, she said, are that it is too embarrassing and that nurses are afraid of offending patients; however, nurses discuss embarrassing topics about bodily functions like hair loss, skin rashes, and diarrhea with patients all the time. Katz recommended for nurses to raise the topic in a compassionate, caring way so that patients will not take offense.

While patients are being short-changed by the lack of conversation around this issue, nurses and other healthcare providers say it is not their job. “The oncologists think it's the nurse's job, the nurse thinks it's the social worker's responsibility, the social worker thinks it's the navigator's responsibility, and the patient is left with many unanswered questions.”

In these situations, it is the nurse’s role to identify when there is a problem and find help for the patient. To that end, Katz recommended two models that could provide a framework for guiding nurses through these conversations: the “CARD” and “5 As” models.

The first helpful model that nurses can use to raise the topic of sexuality is the CARD model:

C: Practice an easy prompt beginning with “Cancer treatment can affect sexual health, which is important to many women and men, and to couples' quality of life.”

A: Ask how the patient is doing, and if there are any issues they would like to discuss.

R: Use resources and referrals and have these ready before having the conversation.

D: Document that the conversation took place.

The 5 As model, based on a model used to encourage tobacco cessation, is a bit different: ask, assess, advise, assist, and arrange. To start, Katz suggested that nurses ask the patient a general question such as, "How has your relationship been since you started chemotherapy?” or, “How is your partner responding to you now that you are having radiation?”

Then, she added that nurses should assess the issue and find resources that can help, such as an endocrinologist, gynecologist, primary care provider, sexuality counselor, or family/marital therapists, so the conversation will flow smoothly.

Finally, nurses should arrange for follow-up with the patient to find out whether the sources that were recommended met the needs of the patient.

Often, patients with cancer are looking for validation that their sexual issues are not uncommon, even perhaps expected. They want to know that what they're going through is something that is common for others receiving the same treatment.

“As a sexuality counselor, I see people on referral, and not infrequently, a patient will walk into my office and say, ‘I have been experiencing x, y, and z. Do you know of anyone who has had a similar experience?’” Katz said. “And I say, ‘Absolutely. It is extremely common for women who are on aromatase inhibitors to have severe vulvar-vaginal dryness.’ And women will often say, ‘Ok. That's all I wanted to know.’”

Katz noted that nurses have the power to influence how their patients navigate their cancer experience, and that sexuality is a quality-of-life issue that should not be ignored. Therefore, nurses should raise the topic so that patients can be validated and know they are heard, and then refer the patients to appropriate resources for help, she concluded.

Katz A. Cancer and sexuality: the nurse’s role. Presented at: PER

Flynn KE, Reese JB, Jeffery DD, et al. Patient experiences with communication about sex during and after treatment for cancer. 

 2012;21(6):594-601. doi: 10.1002/pon.1947. ncbi.nlm.nih.gov/pubmed/21394821. Accessed November 15, 2018.

No Excuses--Talk to Your Patients About Sexuality After Cancer

There is an increasing need for board-certified genetic counselors in the United States, says Stephanie A. Cohen, MS, LCGC, so she is looking to nurses to help improve patient access to hereditary cancer risk assessment and 

At St. Vincent Hospital in Indianapolis, Indiana, where Cohen practices, nurses have begun to collaborate with genetic counselors, implementing screening measures and using telehealth technology to bring genetic services to patients more quickly. In fact, the program was able to quadruple the number of patients they serve with the help of nurse navigators they have trained to be “genetic counselor extenders (GCEs).”

Cohen noted that genetic risk assessment should be available in cancer centers because outcomes related to assessment and testing can change medical management, affect the ability to detect and possibly prevent cancer, identify at-risk family members, save the healthcare system money in the process, and of course, save lives. “There are several standards that require pre- and post-test 

Standards from the Commission on Cancer and the National Accreditation Program for Breast Centers are similar and require cancer risk assessment, genetic counseling, and genetic testing to be provided or referred by their accredited institutions. The United States Preventive Services Task Force (USPSTF) recommends that primary care providers screen women who have certain risk factors, and that women with positive screening results should receive genetic counseling and, if indicated after counseling, BRCA testing.   

Cohen acknowledged the problem revolves around the increased demand for and availability of genetic tests that has outstripped the number of professionals trained to assess whether patients should actually get them and those trained to administer them.

“Today, there are more than 20 labs that offer genetic cancer testing, there are over 40 different multigene panels that you could consider ordering, and there are more than 80 hereditary cancer genes that you could consider ordering,” Cohen said.

Media attention has increased public awareness, so patients are asking about the tests; however, insurers want patients to get pre-test genetic counseling to contain costs. But Cohen questioned, “How many people are we missing?”

She pointed to a 2017 study published in the 

that showed that among women who clearly meet the criteria for genetic testing—women with a history of 

—only 29% discussed testing, 20.2% were advised to undergo testing, and only 15.3% actually had genetic testing.

St. Vincent—a community hospital in a large metropolitan area that is a part of a large health system including 14 hospitals across the state of Indiana&mdash;has 3 board-certified genetic counselors who serve all 14 hospitals. To expand genetic counseling services, the hospital launched a pilot program at 3 sites where the genetic counselors identified nurse navigators to serve as their local contacts to provide limited services as GCEs.

As part of their training, GCEs receive education on cancer genetics and observe genetic counselors They learn how to use the systems to log health histories, order tests online, and review documentation. GCEs  then routinely attend web-based, monthly case reviews and the board-certified genetic counselors conduct quarterly random chart reviews.

Cohen said the system worked well, but also acknowledged there were challenges. In particular, training GCEs took a lot of time, and when the GCE left their position, much knowledge, as well as the use of the trainer’s time, was lost. To counter this, the genetic counselors created a training program—a 7-part webinar series, in which each segment is about 10-15 minutes.

As part of the collaborative process, genetic counselors triage prospective patients based on criteria similar to those from the National Comprehensive Cancer Network (NCCN). Patients who who clearly meet criteria and are at increased risk meet with a GCE at their local cancer center.

“GCEs provide patient education, coordinate appropriate testing, arrange for follow-up; they know who all the players are locally, and can make sure we get the proper follow-up for individuals when they need it,” Cohen said.

Cohen delved deeper into the volume and flow of work. “Over a whole 2 years, we triaged 12,477 surveys (which patients fill out online). One genetic counselor once a week looks through the surveys, spending about 15-20 minutes at a time. The genetic counselor does the triaging. GCEs are responsible for contacting the patient and getting them set up and letting them know whether they will be seeing the GCE or the genetic counselor.”

There is an increasing need for board-certified genetic counselors in the United States, says Stephanie A. Cohen, MS, LCGC, and she is looking to nurses to help improve patient access to hereditary cancer risk assessment and genetic testing.

MINDY WAIZER