	Sharon M. Kern is a PhD candidate at Duquesne University School of Nursing in Pittsburgh, Pennsylvania.

Research on the role of spirituality in healthcare continues to grow, and for patients with cancer, religious and spiritual values can be especially important to their overall quality of life throughout their cancer journey.

A Gallup poll found that 69% of Americans reported being very or moderately religious in interviews conducted between January 2, 2012 and November 30, 2012.

 The term spirituality is multifaceted, with numerous definitions.

 Meraviglia defined spirituality “as experiences and expressions of one’s spirit in a unique and dynamic process reflecting faith in God or a supreme being; it is connectedness with oneself, others, nature, or God; and an integration of the dimensions of mind, body, and spirit.”

Based on sound conceptual underpinnings, 12 spiritual domains of the larger construct of religiousness/spirituality, including Daily Spiritual Experiences, were identified by the Fetzer Institute/ National Institute of Aging Working Group for use in healthcare research.

 The domain of daily spiritual experiences focuses on “those aspects of life that represent day-to day spiritual experiences particularly well.”

The Daily Spiritual Experience Scale (DSES

 was developed after comprehensive research, including extensive interviews with people from various religious traditions, focus groups, analysis of other scales measuring some facet of spiritual experience, and reading theological and religious scripts.

 It is designed to measure types and frequencies of spiritual experiences in healthcare research.

 Additionally, “The experiences reflected in the DSES may be evoked by a religious context or by other events of daily life or by the individual’s religious history or religious or spiritual beliefs.”

The DSES targets an individual’s ordinary spiritual feelings, not mystical experiences.

The DSES response categories measure spiritual experience frequencies.

 The six-item short DSES is included in the Brief Multidimensional Measure of Religiousness/Spirituality that is part of the US General Social Services Survey; however, Underwood recommended the 16-item long form DSES for research.

 The DSES includes items in an adjusted Likert format that measure specific constructs (Box).

Research using the DSES has been increasing,

 and it has been used in a variety of clinical populations, including those with different types of cancer. In a sample of people with diverse cancers, including 47% with breast cancer, Park et al found that daily spiritual experiences had a positive association with diet, exercise, and following medical advice.

		Main Constructs of the Daily Spiritual Experience Scale

			Joy and the Transcendent Sense of Self

However, few studies were found that examined daily spiritual experiences in women with breast cancer. My research as a doctoral candidate at Duquesne University School of Nursing, under the guidance of Associate Professor Linda Goodfellow, PhD, RN, FAAN, addressed this gap in the literature. Daily spiritual experiences were measured using the DSES, as well as responses to a researcher-generated questionnaire in a sample of 110 women with breast cancer.

Additionally, phenomenological inquiry explored the nature and transition of daily spiritual experiences in 17 of the women with breast cancer.

Results showed that daily spiritual experiences were an integral part of the participants’ lives. The three highest item frequency scores on the DSES in my study are shown in the 

. Interview analysis revealed all 16 DSES items were embedded within the participants’ narratives.

Appreciation of family, faith, friends, and nature were reported by several women.

		Table. DSES Items With Highest Frequency

					I feel a selfless caring for others.

					I am spiritually touched by the beauty of creation.

		DSES = Daily Spiritual Experience Scale.

Nurses can suggest activities that may foster sensitivity to daily spiritual experiences. First, nurses can recommend that patients explore their spiritual experiences with the DSES. However, one should not judge how spiritual they are based on the DSES score.

 In Spiritual Connection in Daily Life, Underwood describes the salient features of each daily spiritual experience question and offers suggestions for raising and cultivating one’s awareness of them.

 For example, daily reflection on one’s activities may prompt the identification of the good within a situation that leads to thankfulness.

Gardens, terrariums, nature photographs and art, and walking in parks or along tree-lined streets are some examples of how one can experience the spiritual aspects of nature. Volunteering offers the opportunity for giving back and provides a network to socialize. Active participation in support groups may also be recommended during early phases of breast cancer. Several women in my study found satisfaction in taking on a leadership role within a support group.

Sometimes nurses feel uncomfortable addressing spiritual needs. However, as nurses we need to be sensitive to the spiritual needs of our patients. The DSES is a quick and easy tool to administer and is appropriate to use across all religious affiliations. More information about the DSES may be obtained from The Daily Spiritual Experience Scale website at www.dsescale.org.

		Newport F. Seven in 10 Americans Are Very or Moderately Religious. Gallup website. http://www.gallup.com/poll/159050/seven-americans-moderately-religious.aspx. Published December 4, 2012. Accessed March 11, 2015.

		Pesut B, Fowler M, Taylor EJ, et al. Conceptualizing spirituality and religion for healthcare. J Clin Nurs. 2008;17(21):2803-2810.

		Meraviglia MG. Critical analysis of spirituality and its empirical indicators: prayer and meaning in life. J Holist Nurs. 1999;17(1):18-33.

		Fetzer Institute/National Institute of Aging Working Group. Multidimensional Measurement of Religiousness/Spirituality for Use in Health Research: A report of the Fetzer Institute/National institute on Aging Working Group. Kalamazoo, MI: John E. Fetzer Institute; 2003.

		Underwood LG. Daily spiritual experiences. In: Multidimensional Measurement of Religiousness/ Spirituality for Use in Health Research: A report of the Fetzer Institute/National institute on Aging Working Group. Kalamazoo, MI: John E. Fetzer Institute; 2003:11

		Underwood LG, Teresi JA. The daily spiritual experience scale: development, theoretical description, reliability, exploratory factor analysis, and preliminary construct validity using health-related data. Ann Behav Med. 2002;24(1):22-33.

		Underwood LG. The daily spiritual experience scale: overview and results. Religions. 2011;2(1):29-50.

		Underwood LG. Ordinary spiritual experience: qualitative research, interpretive guidelines, and population distribution for the daily spiritual experience scale. Archive for the Psychology of Religion/ Archiv für Religionspsychologie. 2006;28(1):181-218.

		Underwood L. Introduction to the DSES. Daily Spiritual Experience Scale website. http://www.dsescale.org/. Updated November, 2014. Accessed March 23, 2015.

		Park CL, Edmondson D, Hale-Smith A, Blank TO. Religiousness/spirituality and health behaviors in younger adult cancer survivors: does faith promote a healthier lifestyle? J Behav Med. 2009;32(6):582-591.

Articles

Partner Perspectives

Daily Spiritual Experiences in Nursing Care and Research

Although the treatment landscape for advanced pancreatic cancer has expanded in recent years, this diagnosis remains one of the most devastating for patients and their loved ones.

More than 50% of patients with pancreatic cancer are diagnosed at a later stage. These patients and their caregivers need support in selecting therapies that balance their desire for the best possible outcome with concerns about maintaining a good quality of life. Knowing when to initiate end-of-life planning discussions poses yet another challenge for clinicians who can expect to see more patients with this diagnosis in the years to come.

Currently, pancreatic cancer is the fourth leading cause of cancer death in the United States, and by 2030, the disease is forecast to become the second leading cause of cancer-related death.

Given the intensive supportive care needs of patients with late-stage pancreatic cancer, it’s not surprising that Nina N. Grenon, RN, APRN, BC, described these patients as “a nursing population.” “They have so many needs—physical, psychological, spiritual, and existential&mdash;that nurses can attend to … this is what nurses do best,” said Grenon, a nurse practitioner at the Dana- Farber Cancer Institute in Boston who has been practicing in the pancreatic cancer setting for more than 18 years.

The multifaceted and complex needs of patients with pancreatic cancer stem, certainly in part, from the fact that less than 20% of cases are truly localized to the pancreas, where the cure rate is highest.

For a patient to be cured of pancreatic cancer, radical resection is the only option, explained Philip A. Philip, MD, PhD, FRCP. Unfortunately, when a good resection is achieved with negative margins, the majority of patients will experience recurrence due to the presence of micrometastatic disease, even in patients where the disease is believed to be localized, continued Philip, a specialist in gastrointestinal oncology at the Karmanos Cancer Center in Detroit.

“Over the past decade, we have learned more about this disease than we had at any time before,” but, he added, “this is a very complex disease,” and improving outcomes will require better systemic treatments.

“We don’t really have a defined genetic abnormality that we think is driving the tumor, except for KRAS mutations, which are predominant in 90% of patients … at this point in time, we have not been successful in identifying drugs that are really good and specific to the KRAS pathway.”

Philip acknowledged that screening for pancreatic cancer also remains a challenge, due to a lack of screening tools and guidelines for identifying who to screen. Screening older individuals with newly diagnosed diabetes, for example, could generate a lot of false positives, creating more problems. “We don’t really have a good feel for who is the really high-risk individual in the community so that we can go after those patients and screen them.

“Having said that, there will be individuals who are at high risk because they have a family history of certain cancers, or they may be carrying a gene that predisposes them to pancreatic cancer,” Philip noted. These individuals represent a very small percentage of the population, however, and then there is the conundrum of how often they should be screened, he added.

“The good news is, we have emerging options for the treatment of metastatic pancreatic cancer and now have the luxury of choice for some patients,” said Eileen M. O’Reilly, MD, associate director for clinical research at Memorial Sloan Kettering’s David M. Rubenstein Center for Pancreatic Cancer Research in New York City.

O’Reilly pointed to the major trials which have defined the two current treatment standards in metastatic disease: (1) FOLFIRINOX (a regimen of leucovorin calcium, fluorouracil, irinotecan hydrochloride, and oxaliplatin) and (2) nabpaclitaxel and gemcitabine.

The phase II/III PRODIGE study, conducted in France, looked at FOLFIRINOX compared with gemcitabine in patients with an ECOG performance status of 0-1. The median overall survival (OS) was 11.1 months in the FOLFIRINOX arm compared with 6.8 months for gemcitabine; corresponding improvements in progression-free survival and tumor response also were reported. FOLFIRINOX has inherent side effects, such as gastrointestinal toxicity, myelosuppression, infection, neuropathy, and fatigue. To compensate for these adverse events, this regimen is often modified to preserve efficacy while ameliorating toxicity, O’Reilly said, though most patients stop treatment because of disease progression, not toxicity.

The phase III MPACT study introduced the combination of nab-paclitaxel and gemcitabine for patients with advanced pancreatic cancer. In this trial, the median OS was 8.5 months with nab-paclitaxel plus gemcitabine compared with 6.7 for gemcitabine alone. A study reported at the 2015 GI Cancer Symposium in January found that less frequent dosing of the regimen reduced side effects without impacting efficacy.

 Philip noted that use of these two regimens is not limited to metastatic disease: “We can bring them in for earlier-stage disease such as locally advanced, unresectable, borderline resectable, and even resectable disease.”

O’Reilly said the two regimens are comparable in terms of efficacy, although there are some practical logistical issues, along with patient preferences as to why one approach might be preferable. Philip said that he routinely involves his patients in the decision making because they need to be aware of what is involved with each regimen.

The side effect profile for the gemcitabine and nab-paclitaxel combination appears to be more favorable, he added, but he stressed that both regimens should be used with caution in patients with abnormal liver function tests.

“Sometimes we have to change treatment, not only because of tumor resistance, but also because the patient is not able to tolerate the therapy,” he added. He said this happens more with FOLFIRINOX due to gastrointestinal side effects.

The experts agree that whatever therapeutic regimen is deployed, patients will require intensive supportive care.

“Chiseling away” is the approach Grenon says works best in addressing the many needs of patients with a diagnosis of advanced pancreatic cancer. “When I see patients, I do just one topic at a time, starting with physical symptoms, especially pain.”

“Pain is something patients should not be experiencing,” concurred Philip. “We have to be very aggressive in how we control pain.” He added that patients also frequently experience weight loss, nutritional issues, and depression. It’s very important for the patient to be aware that treating the cancer is not only treating with chemotherapy, radiotherapy and/or surgery, but that there are a lot of supportive care elements which must be incorporated alongside their regular treatment.

The approach to second-line therapy or for those who cannot tolerate the first regimen is typically to switch to whichever regimen hasn’t previously been given. The majority of patients will experience early progression of their disease, warranting further investigation of new therapies. Patients with a good performance status and organ function should be considered for a clinical trial.

Gemcitabine with nab-paclitaxel has been identified as a reference regimen for good performance status of patients with metastatic disease, O’Reilly noted, which provides a platform for integrating new agents. Phase Ib and randomized phase II trials are under way, adding novel agents to the combination. “It’s a little harder to do that with FOLFIRINOX, because of overlapping toxicities,” she added.

For patients interested in pursuing a clinical trial—which both oncologists agreed is especially important in this setting&mdash;the clinical trials database of the Pancreatic Cancer Advocacy Network (PanCAN) is an excellent resource, they said. PanCAN also offers an array of patient support services through its PALS program (

“It’s an advantage for patients to go on a clinical trial,” said Philip, “because they will have the opportunity to be on a new drug in addition to what would be standard of care.”

Philip said that pancreatic cancer is a disease where it’s hard to justify starting the treatment the next day or even the next week. This diagnosis is a lot to take on for the newly diagnosed. “Patients have to have the opportunity to know and discuss their options. And if they really want to do a clinical trial, they have to have the opportunity to go see someone about the trial.”

For Carmela L. Hoefling, RN, MSN, APN-C, AOCNP, who has been practicing in this setting for 12 years, improving awareness and understanding of this disease among nurses is vital.

A nurse practitioner at the Rutgers Cancer Institute of New Jersey, Hoefling is presenting a poster at the Oncology Nursing Society annual meeting this month focused on building the knowledge base of nurses about prevention, the difficulty of early diagnosis, symptom management strategies, current treatments, and clinical trials.

In addition to a family history of pancreatic cancer, there are modifiable risk factors such as obesity and smoking, the latter increasing an individual’s risk by 20% to 30%, she noted. “Nurses need to have a good knowledge base that will give them the tools to help educate the public,” said Hoefling, who would like to see informational sessions focused on pancreatic cancer provided to healthcare professionals delivered on site, as well as at local and national professional society meetings.

					As a nationwide network dedicated to advance research, support patients, and create hope for those affected by pancreatic cancer, PanCAN maintains a searchable database of pancreatic cancer clinical trials for healthcare professionals and the general public. Interested individuals may also contact a trained Patient and Liaison Services (PALS) associate at 877-272-6226 or e-mail pals@pancan.org for guidance on clinical trial options. PanCAN resources also include disease-specific treatment information (through its Know Your Tumor personalized medicine service), advice on diet and nutrition, side effect management, and other support resources.

					Provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting-edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and healthcare professionals. The NPF website provides an array of supportive tools, including physician and patient interviews, disease tutorials, and information about diagnosis, treatment options, and nutrition.

					Supports research into the biological mechanisms and clinical strategies related to the prevention, diagnosis, and treatment of pancreatic cancer, and facilitates enhanced dialogue among members of the medical and scientific communities about basic and clinical research. The organization also provides information and support services for patients and their families.

Hirshberg Foundation for Pancreatic Cancer Research

					A national nonprofit organization dedicated to advancing pancreatic cancer research and providing information, resources, and support to pancreatic cancer patients and their families. The research mission of the foundation focuses on the physiology, early diagnosis, treatment, and prevention of pancreatic cancer.

“Overall, I think healthcare providers have gotten better at recognizing what may be early warning signs, such as new-onset diabetes that can occur 2 to 3 years prior to diagnosis of pancreatic cancer. Also, unintentional weight loss—that’s a red flag that many patients experience for almost a year up to diagnosis,” Hoefling explained.

She also suggested web-based tools or videos, along with informational pamphlets, so that patients and providers can better recognize possible early symptoms of pancreatic cancer and also increase their awareness of lifestyle steps that can help to prevent it. In addition to not smoking, these include maintaining a healthy body weight and limiting alcohol intake.

Hoefling hopes that her project will provide nurses with strategies to help relieve symptoms such as pain, depression, and fatigue that are related to both the disease and its treatment.

“Studies have shown that complementary therapies such as art, music, acupuncture, and meditation, as well as exercise and yoga, have a multitude of benefits,” Hoefling said. “We know that the benefits are not only physical, but psychological as well. When you use these approaches, they help patients decrease their fatigue, which increases their energy level and decreases their stress and anxiety.”

Cover Story

Meeting the Complex Needs of Patients With Pancreatic Cancer

Once a terminal illness, HIV is now considered a chronic disease due to the advances in highly active antiretroviral treatment (HAART). Today, individuals infected with HIV often manage comorbidities, including cancer, with their HIV disease.

 During the pre-HAART era, individuals infected with HIV were at significant risk for three types of AIDS-defining cancers—Kaposi’s sarcoma, non-Hodgkin lymphoma, and cervical cancer.

Due to the advancements in treatment and an aging HIV population, HIV-infected individuals are less likely to die from opportunistic infections but now face a growing problem of non—AIDS-defining cancers, particularly Human Papillomavirus (HPV)–related cancers.

HPV is one of the most common sexually transmitted infections in the United States and includes a group of more than 150 related viruses. There are many subtypes of HPV, but the one most likely to cause anal cancer is HPV-16. HPV-16, as well as HPV-18, HPV-31, HPV-33, HPV-45, and some others are considered high-risk types of HPV because they are strongly linked to cancer.

These HPV subtypes can also cause cancers of the cervix, vagina, and vulva in women, as well as cancer of the penis in men, and throat cancer in both women and men. HPV is passed from one person to another during skin-to-skin contact with an infected area of the body. Infection with HPV is common, and in most cases the body can clear the infection on its own. But in some people, like those with HIV, the HPV infection does not clear and is persistent. Persistent infection, especially with high-risk HPV types, can eventually cause certain cancers, including anal cancer.

The increased prevalence and persistence of HPV infections in the HIV-infected population has contributed to increased incidence of anal cancers. Similar to cervical cancer, persistent HPV infection is a significant cause of anal precancerous lesions and anal cancer in HIV-infected individuals.

Immunosuppression plays a significant role in the high prevalence and persistence of HPV infections seen in HIV-infected individuals. Individuals living with HIV not only have an increased risk of acquiring a HPV infection, but also are more likely to have persistent HPV-induced anal squamous intraepithelial lesions.

These lesions can progress to cancer. Among cancer sites associated with HPV infection, anal cancer has the highest incidence rate and occurs at an even greater rate among those infected with HIV than the general population. HIV-infected individuals are 28 times more likely than the general population to be diagnosed with anal cancer. Mortality and morbidity from anal cancer among HIV-infected individuals is also substantial. The 5-year survival rates range from 47% to 60%.

The goal of a cancer screening program is to capture and treat early signs of precancerous lesions before progression to cancer. The success of a national cervical screening program over the last five decades has led to drastic decreases in cervical cancer mortality and morbidity in the general population.

Analogous to the cervix, the anal canal has a transformation zone where columnar epithelial cells transition to squamous epithelia. This zone is vulnerable to the development of precancerous lesions from HPV infection.

Anal pap testing involves collecting cells from the anal canal for cytological examination. All abnormal anal pap cytology, regardless of grade, is recommended to be followed up by anoscopy and biopsy of suspected precancerous lesions for histologic confirmation. High resolution anoscopy is important in identifying areas that require treatment in efforts to prevent progression to anal cancer. Unfortunately, research-based screening guidelines for anal cancer are not available.

Jessica Wells, PhD, RN, is working to better understand how to decrease the personal and clinical burden of anal cancer in persons living with HIV. Wells and colleagues conducted an integrated review of recommendations and guidelines for anal cancer screening to provide a guide to inform healthcare clinicians.

This review found that no formal national or international guidelines exist for routine screening of anal cancer for HIV-infected individuals. To date, no randomized control trial has provided strong evidence supporting efficaciousness and effectiveness of an anal cancer screening program. Wells reviewed and synthesized screening recommendations for HIV-infected individuals from seven international, national, and statebased reports. These guidelines based on expert opinion suggest that anal cancer screening may be effective in decreasing the incidence of anal cancer. This review highlights the need for further research to define standard of care for anal cancer screening in HIV-infected persons, a vulnerable group that will benefit from an anal cancer screening program.

Given the heightened incidence in this population, it is imperative that clinicians provide or connect the patient to cancer prevention resources, including HPV vaccination when indicated. From the review of recommended guidelines, it is suggested that all HIV-infected patients should, at a minimum, have a visual inspection and digital rectal exam included in their annual physical exams. Annual or biennial anal pap testing is strongly recommended, especially for those high-risk individuals living with HIV. 

These recommendations are given under the assumption that these patients are managed at a high-resource setting where trained and skilled clinicians, cytology, pathology, high resolution anoscopy, biopsy, and necessary treatment are available.

No doubt more research and education are needed to combat anal cancer, especially for those HIV-infected individuals who experience such a high burden of disease. Future efforts must focus on screening studies to provide clear directions for cancer prevention in this population to combat the rising rates of anal cancer.

		Darragh TM, Winkler B. Anal cancer and cervical cancer screening: key differences. Cancer Cytopathol. Feb 25 2011;119(1):5-19.

		Shiels M, Cole S, Kirk G, Poole C. A Meta-Analysis of the Incidence of Non-AIDS Cancers in HIV-Infected Individuals. J Acquir Immune Defic Syndr. 2009;52(5):611-622.

		Palefsky JM, Holly EA, Gonzales J, et al. Detection of human papillomavirus DNA in anal intraepithelial neoplasia and anal cancer. Cancer Res. 1991;51(3):1014-1019.

		Ahdieh L, Klein RS, Burk R, et al. Prevalence, incidence, and type-specific persistence of human papillomavirus in human immunodeficiency virus (HIV)-positive and HIV-negative women. J Infect Dis. 2001;184(6):682-690.

		Frisch M, Biggar RJ, Goedert JJ. Human papillomavirus-associated cancers in patients with human immunodeficiency virus infection and acquired immunodeficiency syndrome. J Natl Cancer Inst. 2000;92(18):1500-1510.

		Chiao EY, Giordano TP, Richardson P, El-Serag HB. Human immunodeficiency virus-associated squamous cell cancer of the anus: epidemiology and outcomes in the highly active antiretroviral therapy era. J Clin Oncol. 2008:26(3):474-479.

		Wells JS, Holstad MM, Thomas T, Bruner DW. An integrative review of guidelines for anal cancer screening in HIV-infected persons. AIDS Patient Care STDs. 2014;28(7):350-357.

Once a terminal illness, HIV is now considered a chronic disease due to the advances in highly active antiretroviral treatment (HAART). 

Anal Cancer in HIV-Infected Individuals

		Lisa Schulmeister, RN, MN, APRN-BC, OCN®, FAAN

Oncology Nursing Consultant, Adjunct Assistant Professor of Nursing

		Louisiana State Health Sciences Center in New Orleans, Louisiana

An oncologist told me he retired because he couldn’t pronounce the names of the drugs anymore. Neither can most of us when a new drug or biologic agent is introduced, and we see the odd spelling of the drug name for the first time. Ever wonder where generic and trade drug names come from?

There is actually a method to the madness. Generic drug names usually describe a drug’s physiological function or its chemical structure. The generic drug naming process was formalized in 1961 when the American Medical Association, the US Pharmacopeial Convention, and the American Pharmacists Association created the US Adopted Names (USAN) Council to select concise generic names. The FDA joined the council in 1967.

The USAN Council names the active ingredients in drugs, biologics, vaccines, and even contact lenses and sunscreens. The council then recommends generic names to the World Health Organization’s International Nonproprietary Names program, which ultimately chooses a single generic name for each new drug that is acceptable worldwide and then used globally. Drug manufacturers are required to obtain generic drug names using this process in order to bring new drugs to market.

Generic names for drugs are constructed with 

 and stems that classify the drugs into different categories and sometimes are used to distinguish drugs within categories. For example, the suffix “mab” indicates the drug is a monoclonal antibody, “ximab” indicates it’s a chimeric antibody that responds to more than one antigen, and “zumab” refers to humanized antibodies.

Drug manufacturers can suggest generic drug names to the USAN Council; however, any name that suggests the drug is superior to or more effective than another drug will not get approved. On occasion, the council approves manufacturer’s requests for proposed generic drug names. For example,  Onyx Pharmaceuticals’ multiple myeloma treatment carfilzomib is named after molecular biologist Philip Whitcome (who was a founder of the company that first developed carfilzomib) and his wife, Carla, who both succumbed to cancer (the “Ph” in Philip was changed to an “f” to make the name compatible with multiple languages). Dasatinib for CML is named for research fellow Jagabandhu Das. In keeping with USAN Council requirements, both of these generic drug names include a suffix that describes the classification of the drug (eg, carfilzomib is a proteasome inhibitor and dasatinib is a tyrosine kinase inhibitor).

Choosing a brand, or trade, name is an entirely separate process, and an interesting one. Historically, trade names incorporated or resembled their chemical or generic names. For instance, the chemical name of Tylenol is N-ace

 so it’s easy to see where the trade name originated. Over time, though, trade names have become largely independent of their generic or chemical names.

The process of developing a trade name for a new drug is complex. The manufacturer’s goal for a new name is that it is distinctive and memorable, while at the same time is not a drug name that looks or sounds like the generic or trade name of a drug already on the market. In addition, the trade name ideally is easily pronounceable; however, with the proliferation of new drugs of all types, this isn’t always possible.

Manufacturers often use creative agencies to come up with new trade drug names, and then use third-party organizations (such as the Brand Institute) to obtain feedback about the proposed trade names. The proposed names are reviewed for similarity to existing drug names, implied unsubstantiated or false claims (for instance, does the drug name imply cure?), and possible name confusion (years ago, a proposed drug trade name was eliminated because it sounded like “the name of one of Santa’s reindeer” to a number of people surveyed).

Once the trade name has been finalized, it’s up to the manufacturer to market the drug and educate clinicians and consumers on how the drug’s trade name is pronounced. Trade names starting with the letter “X” have been especially challenging to pronounce when they’re seen for the first time. Likewise, there are several trade names of oncology agents that are pronounced differently than they look phonetically, which reminds us all of our elementary school days when we were learning how to read.

Nurse's Notes

An oncologist told me he retired because he couldn't pronounce the names of the drugs anymore. 

My Worst Nightmare: A Spelling Bee With Only Oncology Drug Names

Please enjoy this music while your party is reached … “Hello, Mr. Freeman,* this is Venteria Knight. I’m a nurse navigator with Northside Hospital, and we met at the prostate cancer screening last week.”

“Yes, I remember you, and you were nice and all, but I was hoping I didn’t have to hear your voice ever again,” he uttered with nervous laughter. “You said that if everything was okay, that I would just get a letter in the mail, but you’re calling me so there must be something wrong. Tell me, how long do I have; I’m a man, I can take it.”

We laugh together. “Yes, I said I would call if something was abnormal, but I also said don’t panic when I call, that my call doesn’t mean you have cancer—it just means further follow-up is needed. We have mailed your results, but I wanted to call and give you a heads-up that your PSA was elevated at 60.4. Normal is 0-4.”

“I don’t have health insurance. I don’t know what I’m going to do,” his comedic tone now serious and sullen. We discussed what his options were for assistance, and I assured him that despite his insurance status we could help.

A couple of weeks after this process started, Mr. Freeman called and said that he was facing eviction. His work as a traveling artist was unsteady, but this was the season where work was available and he was choosing to work to pay his rent, car payment, and for food for himself and his dogs. I educated him on the importance of this follow-up, particularly with the risk factors of his age, race, and family history, but my last words to him were …”If you change your mind, it’s okay to call me. I’m here if you need me.”

Fast forward 1 year later. Mr. Freeman called back and said, “Throughout my travels I met several people who had prostate cancer, and their PSA was lower than mine. I’m concerned and I need your help.”

Helen, the GU nurse navigator, and I met with him when he came for a repeat PSA prior to scheduling his biopsy. Helen provided patient education, I discussed resources, and together, she and I made sure that he was equipped with the knowledge to make an informed decision. At the end of this visit, Mr. Freeman said, “Wow…you guys are making me feel like a celebrity, I feel like I can say ‘have your people, call my people

		Additional Resources for Financial Support

Mr. Freeman was diagnosed with prostate cancer and treated with radiation and leuprolide. During treatment, he experienced several financial hardships. He did end up losing his home and started living out of his car; his car broke down, hindering his ability to get to appointments; and, there was no work available. He literally became a “starving artist.” He communicated with Helen and I regularly about treatment, other issues, and sometimes just to talk. 

Despite this tumultuous ride, he continued to laugh, joke, and handle each obstacle with a cheerful spirit. In our last conversation, when he was finally finished with treatment, he said, “When I first met my navigators—my team&mdash;I really thought I was the only patient you had because I was made to feel important and that my questions mattered. Now that I realize how many people you all help, I’m even more amazed because I wasn’t your only patient, and to this day you all are still “

The moral of this story is that sometimes as nurses we tend to take things to heart and to our homes when we are unable to help someone, especially when we know they really need it. Yet sometimes people don’t want—or are not ready&mdash;for our help when we think they need it. Sometimes the best way that we can help our patients is simply by letting them know we are here when they are ready.

Venteria L. Knight, RN, MPH, has been an oncology nurse navigator specializing in disparities, community outreach, and education for more than 4 years with Northside Hospital Cancer Institute in Atlanta, Georgia. In 2012, she was nominated for the March of Dimes Oncology Nurse of the Year award for her work with uninsured and underinsured individuals with cancer.

Nurse Perspectives

Please enjoy this music while your party is reached â€¦ "Hello, Mr. Freeman,* this is Venteria Knight. I'm a nurse navigator with Northside Hospital, and we met at the prostate cancer screening last week."

Staying Positive and on Course, Despite Financial Hardships

Big changes are ahead for oncology nurses and other healthcare professionals who prepare and administer hazardous drugs, as new regulations for safe handling are being finalized by the US Pharmacopeial Convention (USP).

These imminent regulatory changes make the time especially ripe for stakeholders to enlist and support their members in efforts to improve practice.

Six oncology professional organizations gathered in Washington, DC, recently to outline key issues for healthcare practitioners involved in the preparation and administration of hazardous drugs. The meeting was hosted by the Oncology Nursing Society (ONS) and attended by 14 nurses and other professionals representing the American Society of Clinical Oncology (ASCO), the American Society of Health-System Pharmacists, the Association of Community Cancer Centers, the Association of Pediatric Hematology/Oncology Nurses, and the Hematology/Oncology Pharmacy Association (HOPA).

More than 50 studies have demonstrated the presence of hazardous drugs in the urine of healthcare workers, indicating actual exposure. Occupational exposure to hazardous drugs has been associated with acute symptoms such as nasal sores and hair loss, adverse reproductive outcomes such as infertility and miscarriages, genetic changes such as DNA damage, and an increased occurrence of cancer, according to a review of the research literature by the Centers for Disease Control and Prevention.

“Nurses should not have to risk their health and safety when caring for patients who are receiving chemotherapy,” said Martha Polovich, PhD, RN, AOCN, who currently leads the ONS Chemotherapy and Biotherapy Special Interest Group. “Yet, healthcare is the only industry in the United States where protection against exposure to carcinogens is optional.”

A joint position statement on safe handling was finalized at the stakeholder meeting and formally endorsed by ONS, ASCO, ad HOPA. Polovich said that ONS had been working on a position statement for well over a year, and ASCO also had its own working group on hazardous drug exposure. Release of the proposed USP Chapter 800 for public comment last fall spurred much interest, she added, and it made sense to build on that momentum and bring other oncology groups together to focus on safe handling in clinical practice.

Hazardous Drugs—Handling in Healthcare Settings

, generated a lot of public comment, and USP decided to allow additional time (through May 31, 2015) for public review and comment on a republished version reflecting that input. Publication of the final USP Chapter 800 is anticipated early in 2016. Previously, hazardous drug preparation was covered under USP Chapter 797 involving sterile drug preparation and patient safety guidelines, so a new chapter devoted to safe handling in healthcare settings is significant, said Polovich.

“Because USP 800 is an enforceable standard, that’s why there is more interest now, because people will be held accountable. It has implications for organizations to make sure they are doing everything right.” 

Mandating the use of closed system transfer devices (CSTDs) for drug administration is part of USP 800, and this has implications for practice, Polovich explained, including costs for organizations who must provide the devices and training for nurses who haven’t been using these devices in the past.

“The main concern is that USP has an implementation timeline that would allow organizations to phase this in over time,” said Polovich. “And I think that they will.”

Polovich is a clinical associate professor at the Byrdine F. Lewis School of Nursing and Health Professions at Georgia State University and a consultant on the training portion of a multisite 

 of oncology nurse exposure to hazardous drugs funded through a $2.2 million grant from the National Institute of Occupational Safety and Health. Other activities under the grant include spill management and, importantly, measuring the extent to which nurses are exposed to hazardous chemotherapy in practice and assessing the impact of targeted interventions to prevent such exposure.

This recent focus on hazardous drug exposure has led to greater awareness, said Polovich, noting that she has seen more awareness among staff and administrators, especially in the context of the regulatory issues associated with USP 800.

“I’ve always thought that nurses are responsible for their own practice, but basically we’re employees in organizations, and so the focus needs to be on the organizations, because if they don’t change, the nurses can’t change. You can’t use personal protective equipment (PPE), for example, if your employer doesn’t provide it.

“As organizations get on board—and they’ll have to because of USP 800&mdash;we’re going to see more movement in the next couple of years.”

The stakeholder groups have identified areas of common ground for further collaboration in the coming months. The priority, Polovich said, will be on getting the information out to their respective members. Among the consensus statements agreed at the stakeholder meeting are to provide resources, including templates, to promote compliance with implementing safe handling; develop resources for how to use PPE and CSTDs; and provide free access to a medical surveillance questionnaire template.

“That’s where our focus will be over the next several months, providing tools so that staff can make the practice changes that they need to," Polovich concluded. 

April 2015

Daily Spiritual Experiences in Nursing Care and Research

Meeting the Complex Needs of Patients With Pancreatic Cancer

Anal Cancer in HIV-Infected Individuals

My Worst Nightmare: A Spelling Bee With Only Oncology Drug Names

Staying Positive and on Course, Despite Financial Hardships

Professional Groups Unite to Make Safe Chemo Handling a Priority in Practice