Florida’s First Lady, Casey DeSantis has used her role as a breast cancer survivor to advocate for new funding for the state. This started in December 2021, when the First Lady spearheaded a $100 million proposal for cancer treatment as well as research.

DeSantis is now cancer free since March 2022 after undergoing lifesaving surgery and radiation therapy.

I find that I am interested in Florida’s new program, called Florida Cancer Connect.

 It has been described as a “one stop shop”

 for patients, and DeSantis refers to it as a “centralized website.”

The goal is to streamline all the resources available to cancer patients in Florida under 1 umbrella. The website will also work as a bridge to connect patients to other patients, families, and caregivers. Florida Cancer Connect’s website is a joint effort between the Florida Department of Health and the Florida Agency for Health Care Administration. Of note, there was no new financial arrangements between the 2 entities. Instead, both departments used money already in their reserves to participate in this project.

This singular approach gives the patient and family new strategies to prevent cancer.Importantly, it will help individuals trying to work through their health insurance maze. I particularly appreciate that FLCancerConnect will have information geared towards the patients’ families, as they can often be forgotten. The site will also have insight from those who have survived cancer, granting patients links to valuable support systems online.DeSantis will also draw on her own experience with cancer to add small touches that will help support patients. She will include information that, in her experience, is often hard to find. She said in an interview“If you have to buy a wig, or if you’re looking for other things that might help with a surgery, where do I go? Where do I turn?”

All of these resources will be available via this website.

A look at the website reveals a mechanism for locating cancer resources in the state. It also has a section regarding insurance company bills. The Florida Department of Financial Services Insurance Consumer Helpline can be accessed toll free at 1-877-MY-FL-CF (1-877-693-5236) or 1-850-413-3089 if calling from another state. The website also features a health insurance consumer guide. An innovative section, called the Letters of Strength page, has specific tools for cancer survivors and their Stories of Strength that can be read and used to inspire patients and their families.

Florida is not the only state with cancer screening programs. New York State has a Cancer Services Program which at no cost offers cancer screening and diagnostic services to its’ residents. Meeting certain age, and income criteria are also mandatory. These programs offer services for breast, cervical and colorectal screening. 1-866-442-CANCER (2262) is the toll-free phone number that is available 24/7 to connect the resident to these services.

 If the screening reveals any findings that require further evaluation, there are also diagnostic services and a dedicated case manager to walk the patient through this process. Moreover, in California, the Department of Health Care Services has free breast and cervical cancer treatment for its’ residents. In addition, there are no cost breast exams, mammograms, and Pap tests as well as a prostate cancer treatment program called Impact.

I am happy to see more states turning their attention to centralizing resources for patients with cancer. I am looking forward to seeing the impact that DeSantis’ project may have on patients living in her state. As an oncology nurse and social worker, I believe that these programs are of tremendous value and I hope to see the trend continuing.

First lady Casey DeSantis announces $100 million proposal for cancer research and care in Florida. Florida Gov.com. December 8, 2021. Accessed August 22, 2022. 

Troncoso, R.Casey DeSantis comes to Jacksonville to announce statewide cancer initiative. August 3, 2022. Accessed August 22, 2022. WJCT News. 

Cancer Services Program. New York State Department of Health; New York State Cancer Services Program. Updated September 2022. Accessed September 13, 2022. 

Cancer Programs. Department of Health Care Services. Updated September, 2022. Accessed September 13, 2022. https://bit.ly/3S3TM0Z

Articles

Debi Fischer, MSW, BSN, BA, LCSW, RN, discusses the launch of the Florida Cancer Connect program and what this initiative represents for patients across the United States. 

Opinion: New Cancer Treatment Options in Florida Represent Larger Shift Toward Centralized Care

A saturated fatty acid diet, but not a high-fiber diet, may be linked to superior outcomes in patients with non–small cell lung cancer (NSCLC) receiving immunotherapy checkpoint blockade (ICB), according to Julie Malo, CCRP.

However, the mechanisms between colon epithelial integrity and immune responses are not well understood and further strategies to use the microbiome as adjuvant therapy are warranted, she added.

Malo, who is a research nurse at the University of Montreal, presented findings from a nurse-led dietary intervention at the 

European Society of Medical Oncology Congress 2022

. Immunotherapy is changing the treatment landscape across oncology, Malo said, adding that this treatment modality has had a particularly significant effect on the treatment of patients with melanoma and NSCLC.

“ICBs are now the standard therapy for a wide variety of [cancers] but are the backbone therapy for patients with NSCLC or melanoma,” she said. “We can see a significant improvement in the survival rate in patients treated with immunotherapy vs those treated with chemotherapy alone.”

For example, findings from Robert et al showed that treatment with nivolumab (Opdivo) prolonged the median survival of patients with melanoma compared with dacarbazine. At a follow-up of 18 months, the median overall survival (OS) with the immunotherapy (n = 210) was not reached compared with 10.8 months (95% CI, 9.3-12.1) with dacarbazine (n = 208). The hazard ratio was 0.42 (99.79% CI, 0.25-0.73; 

Moreover, Reck et al demonstrated that pembrolizumab improved OS for patients with lung cancer. At a follow-up of 72 months, the median OS with immunotherapy was 26.3 months (95% CI, 13.3 to 40.4) vs 13.4 months (95% CI, 9.4-18.3) with chemotherapy. The number of events associated with pembrolizumab (n = 154) was 103 (66.9%) vs 123 (81.5%) with chemotherapy (n = 151; HR, 0.62; 95% CI, 0.48-0.81).

“Despite these improvements in outcomes with ICB, resistance to these treatments is universal,” Malo explained. “Therefore, finding new strategies to increase ICB efficacy or [challenge] ICB resistance is an unmet clinical need.”

According to Malo, literature suggest that the microbiome plays a 

key role in the efficacy of immunotherapy treatments

The intestinal microbiome is the most populated of the different microbiomes in the human body, it is situated in the small intestine and the colon. Here, bacterial colonization occurs in a very gradual and specific way: the intestinal bacteria absorb oxygen and uses it to multiply and promote bacteria growth in anaerobic environment.6

Multiple factors affect the diversity of the microbiome, including where an individual was born, their current geographical location, and genetics. The microbiome increases its diversity through the first 3 to 5 years of an individual’s life, but, once established, remains relatively stable throughout adult life. Only major changes in lifestyle or diet, including the introduction of an antibiotic treatment, will upset the microbiome once it has been established. However, certain changes in the microbial composition can induce the production of toxics and create chronic inflammation. This process is called dysbiosis and it can affect the efficacy of ICB.4

Findings from Derosa et al showed that in a cohort of patients with NSCLC receiving ICB, the median OS among those who were receiving antibiotic therapy was 7.9 months, whereas, among those who were not receiving antibiotic therapy, the median OS was 24.6 months (HR, 4.4; 95% CI, 2.6-7.6;

“In light of all this information, it is important to find ways to modulate the microbiome in order to use it as an adjuvant to ICB treatment,” Malo explained.

Investigators sought to influence the gut microbiome in a noninvasive and natural way. To that end, a team of oncologists, oncology nurses, and nutritionists designed a questionnaire to ask patients about their different dietary habits, including their intake of fruits, vegetables, meat, and alcohol, as well as information about their geographical living environment. The questionnaire therefore offered a global view of their lifestyle habits.

The questionnaire was presented to patients (n = 105) with advanced NSCLC prior to their initiation of their ICB treatment. A 1-hour interview with a research nurse and a 47-question assessment captured information on the intake of 30 different nutrients. Examples of patient questions included if they ate 3 meals per day, if they fasted, if they consumed fresh or canned fruit, salad, vegetables, potatoes, chips, eggs or egg-based recipes, legumes, nuts and seeks, high-fiber breakfast cereals, whole wheat bread, other bread options, or rice.

“Our first finding was that our patients had a fairly homogeneous and relatively poor diet that was lacking variety,” Malo noted, adding that most patients reported that they do not eat bran cereal, oatmeal, or other grains, but almost all of them consume coffee.

Malo J. Impact of diet on immune checkpoint blockade; nurse-directed dietary intervention. Poster presented at: European Society for Medical Oncology Congress 2022; September 9-13, 2022; Paris, France.

Reck M, Rodríguez-Abreu D, Robinson AG, et al. Five-year outcomes with pembrolizumab versus chemotherapy for metastatic non-small-cell lung cancer with PD-L1 tumor proportion score ≥ 50. 

. 2021;39(21):2339-2349. doi:10.1200/JCO.21.00174

Robert C, Long GV, Brady B, et al. Nivolumab in previously untreated melanoma without BRAF mutation. 

. 2015;372(4):320-330. doi:10.1056/NEJMoa1412082

Derosa L, Hellmann MD, Spaziano M, et al. Negative association of antibiotics on clinical activity of immune checkpoint inhibitors in patients with advanced renal cell and non-small-cell lung cancer. 

. 2018;29(6):1437-1444. doi:10.1093/annonc/mdy103

Hanahan D. Hallmarks of cancer: new dimensions. 

. 2022;12(1):31-46. doi:10.1158/2159-8290.CD-21-1059

Clarke G, Sandhu KV, Griffin BT, Dinan TG, Cryan JF, Hyland NP. Gut reactions: breaking down xenobiotic-microbiome interactions. 

. 2019;71(2):198-224. doi:10.1124/pr.118.015768

Julie Malo, CCRP, a research nurse with the University of Montreal, discusses a nurse-directed initiative examining how the gut microbiome affects immune checkpoint blockade responses in patients with non–small cell lung cancer. 

Nurse-Led Research Links Saturate Fatty Acids to Improved Immunotherapy Responses in NSCLC

Cannabinoids are becoming more popular for patients with cancer as a pain management strategy. However, with inconsistent laws across states and federal bodies, it can be difficult for nurses and patients to comfortably discuss cannabinoids and cannabinoid use.

As the public perception and patient success stories with unconventional, alternative, and natural therapeutics shift consumer attitudes, it is important for nurses and their patients to understand the differences in the products and the adverse effects associated with each. According to a study by Butler et al in 2021, nearly half of individuals who participated in a survey who had consumed cannabidiol (CBD) did not disclose use to their health care provider.

“We see a lot of patients who have been trying to talk to us about CBD [cannabidiol], and cannabinoids and THC, [tetrahydrocannabinol]” Karen Hande, PhD(c), DNP, ANP-BC, CNE, FAANP, ANEF, a professor of nursing at Vanderbilt University School of Nursing, said in a presentation during the Oncology Nursing Society Bridge.

Although Hande stated in her presentation that she was no expert in cannabinoids or medical cannabis, her clinical research primarily focuses on helping patients effectively manage their cancer-related pain. Therefore, she has become very interested in cannabis and has dedicated a lot of time and research to best understand the evidence-based data that exists for these products. In her presentation, “Cannabinoids for Patients With Cancer,” Hande discussed the available evidence on CBD and the possible risks, particularly in vulnerable populations.

“I think it’s just important for under us to understand a kind of broad overview about cannabinoids and THC and CBD, because this gives us a better understanding of where the laws come into play,” Hande said. She added, “It took me quite some time to try to understand all the differences and trying to make sure I give the correct information to my patients.”

A key concept for oncology nurses to understand, according to Hande, is the variations of cannabinoids.

Cannabinoids are compounds found in the cannabis plant. These compounds interact with the human endocannabinoid system. The exact relationship still required further understanding.

“Cannabis has many names for [many] strains, and hemp and marijuana are under this big umbrella of cannabis plants; they are all considered to be 1 species: the cannabis sativa plant,” she said. “This is a genus of flowering plants. And these can contain about over 100 phytocannabinoids, [and] they have a wide range of effects on the body in the brain.”

The following products are derived from cannabis: marijuana, hemp, THC, and CBD. In addition, there are man-made synthetic cannabinoids (K2/Spice); however, these agents are designed to mimic the mind-altering effects of illicit drugs. For her talk, Hande chose to focus on the products derived from the plant itself, as oncology nurses are more likely to encounter patients using plant-derived products.

If a patient reports marijuana use, this means they are using the dried flowers, leaves, stems, and seeds of the cannabis plant. Marijuana is also known as cannabis, weed, pot, or dope. Specifically, it can be defined as a plant with at least 0.3% delta-9 THC by weight. It is consumed by smoking (joints, blunts, bongs), vaping (vaporizing electronics devices), or by mixing or infusing it into foods or drinks (edibles).

“This is an important differentiating factor that I’ll be highlighting regularly through this talk,” Hande said during her presentation. “Marijuana is more than 0.3% of THC by weight.”

Marijuana is the most used federally illegal drug in the United States, with approximately 18% of Americans reported using it at least once in 2019 (~48.2 million Americans).1

Because marijuana has THC, it is associated with the following health risks: alterations in memory, learning, attention, decision-making, coordination, emotion, and reaction times.2 In terms of long-term health, marijuana has been linked to an increased risk of psychosis and schizophrenia,3 and, like other drugs, it’s use during pregnancy may increase the risk of embryo-toxicities.4 Moreover, this drug, depending on where it is sourced, may be laced with other substances. Consumers may or may not be aware of other substances in their product.

Using marijuana in combination with other agents may also result in impairment and can increase the risk of overdose.

Federally, marijuana is illegal as a recreational drug. It is classified as a schedule 1 drug, per the Drug Enforcement Agency. Although it is legal in some states for medical for nonmedical adult use, this does not mean that is safe, Hande noted. Specifically, smoking marijuana can expose users to harmful chemicals, and insufficient evidence exists to document the safest method for consuming.

Legally, hemp must contain a THC concentration of less than 0.3% by dry wright. It is the same species of plant as the cannabis plant and, along with bamboo, it is one of the fastest growing plants on Earth. There are almost no restrictions on hundreds of compounds made by the plant. Industrial hemp is cannabis sativa plant grown specifically for industrial or medicinal use.

“Many states across the country have hemp cultivation,” Hande said. “This allows cultivation of hemp from commercial or research or pilot programs. There are only a few states that do not allow cultivation of hemp.”

In 2018, the farm bill legalized the production and sale of hemp and its extracts, removing the product from the controlled substance act. Of note, per federal law, hemp cannot contain greater than 0.3% THC. If the concentration of THC surpasses this measurement, it is classified as marijuana.

As of September 2022, 47 states have enacted legislation to establish hemp production programs or cultivation research.

THC is a compound of the cannabis plant. This psychoactive agent causes, what is known as a high. It is consumed via dabbing—a specific method for inhaling THC concentrates.

Unfortunately, the concentrated forms of THC mean that there is an increased risk of additives or contaminating substances existing in the product.

CBD is another active cannabinoid found in the cannabis plant. This agent is not psychoactive and consequently does not cause a high.

CBD can be derived either directly from the cannabis plant or from a hemp product. The key difference between cannabis- and hemp-derived CBD is the concentration of THC. Hemp-derived CBD must have a THC concentration less than 0.3% to be federally legal. CBD products containing greater concentrations are federally illegal but are legal under some states.

“The main difference between cannabis and hemp-derived CBD is the amount of THC that it can contain,” Hande stressed. “Hemp-derived CBD includes less than 0.3% of the THC. [Therefore,] it’s federally legal to use hemp-derived CBD, but CBD products that contain more than 0.3% of THC are federally illegal. This is where the conflict between the state and the federal laws [can arise].”

The extraction process for CBD and THC are similar; farmers harvest the hemp and it is sent to an extractor. If the extraction is not performed with pharmaceutical grade standards, the CBD may become contaminated with THC, chemical solvents, or even pesticides. This is compounded by the fact that the US does not hold CBD supplies to a standard, and federal enforcement is lacking.

CBD can be converted into delta-8-THC, delta-9 THC, and other THC isomers through a solvent, acid, and heat. These products end up with higher concentrations of delta-8 THC than those which occur naturally in the cannabis plant. Consequently, these products may create harmful by-products that presently are not well-characterized.

Delta-8 THC products are increasing in popularity, in both marijuana- and hemp-based markets. It is appearing in markets that are operating legally under state, territorial, or tribal laws.

As of 2022, most states and territories permit full and restricted marketplaces where consumers can purchase hemp and hemp-derived CBD products.

According to Hande, there are a wide variety of delta-8 THC-containing products in the market. For example, vapes, smokable hemp sprayed with delta-8 THC extract, distillates, tinctures, gummies, chocolates, and even infused beverages can fit into this category. Moreover, the testing method for these products are still under development. This means that Delta-8 THC products may not be systematically tested for contaminants such as heavy metals, solvents, or pesticides which can cause adverse health effects.

How to Talk to Your Patient About Cannabinoid Use

Nurses hold a key role in discussing not only the risks of cannabinoid use but providing educational information for the safe consumption. Should a patient be interested in trying CBD products, counsel on the lack of evidence, contaminants, misleading labels, and legal issues of surrounding use. One approach to counter the “buyer beware” notion is to provide evidence-based patient education and to screen for any drug/drug interactions that may occur should the patient consume CBD products.

Additionally, assessing the patient’s baseline knowledge base before use will be beneficial and open communication may help establish trust and increase reported use between the patient and the health care provider. Finally, addressing the topic early on in care may remove the barrier of the stigma surrounding cannabinoid use.

Hande concluded by adding that many trials are ongoing in the cannabinoid arena and that results are expected to be published over the next several years. She noted that the oncology nurses should be up-to-date on the latest findings to provide guidance.

Marijuana and public health data and statistics. Centers for Disease Control and Prevention. June 8, 2021. Accessed September 14, 2022. bit.ly/3ROqaoi

Testai FD, Gorelick PB, Aparicio HJ, et al. Use of marijuana: effect on brain health: a scientific statement from the American Heart Association. 

. 2022;53(4):e176-e187. doi:10.1161/STR.0000000000000396

Di Forti M, Quattrone D, Freeman TP, et al. The contribution of cannabis use to variation in the incidence of psychotic disorder across Europe (EU-GEI): a multicentre case-control study. 

. 2019;6(5):427-436. doi:10.1016/S2215-0366(19)30048-3

Health effects of marijuana and cannabis-derived products presented in new report. National Academies. January 12, 2017. Accessed September 14, 2022. 

Karen Hande, PhD(c), DNP, ANP-BC, CNE, FAANP, ANEF, explains the difference between some of the popular cannabinoid products that patients with cancer may be taking.

Oncology Nurses: What Cannabinoid Is Your Patient Taking?

® spoke with Christine Miaskowski, PhD, RN

professor in the Department of Physiological Nursing and Anesthesia at UCSF School of Nursing. Miaskowski discusses results from research which showcases an increased risk of hearing loss among patients who received platinum- or taxane-based cancer treatments. She also discusses the importance of including hearing assessments as a standard of care for survivors.

Top takeaways from the discussion include:

“When we did audio metrically confirmed hearing loss [assessments], we found that between 50% to 70% of survivors had confirmed hearing loss.” 

“It’s really, very surprising because it is a group of patients with very common cancers: breast, lung, gynecologic and GI [gastrointestinal] malignancies.” 

“The good news is that the type of hearing loss these patients experience is amenable to a hearing aid. So, if we can get people tested, and they demonstrate this kind of hearing loss, we can improve their quality of life.” 

“Nurses care about interactions with other people, people’s quality of life, [their] social function… if you've got hearing loss, and you're sitting at a table with people, and you can't hear them, you're not going to be likely to participate.” 

“We don’t even think about [some of] these consequences; in terms of occupation, social gatherings, safety for a child… We really, as nurses, need to be doing something about this.” 

Episode 33: Balancing the Benefit and Toxicity of Cisplatin in Young Children with Cancer

Episode 45: Key Advances in Cancer Survivorship Toxicity Management

Audiological Assessments May Be Vital Component of Cancer Survivorship Care Following Chemotherapy

Hearing Loss Found in Testicular Cancer Survivors After Cisplatin Therapy

Genetic Mutation Could Play Role in Cisplatin-Induced Hearing Loss

Oncology Nursing News® Publication Features

Survivors Need Research-Based Interventions and Stronger Coordination Across Care Continuum

What Are the Needs of Cancer Survivors 5 Years or More After Treatment?

Everyone's Business: Taking Survivorship Care to the Next Level

Heather E. Wheeler Discusses Cisplatin-Induced Hearing Loss

Cheung S, Henderson-Sabes J, Mastick J, et al. Cancer survivors and neurotoxic chemotherapy: hearing loss and tinnitus. 

. Published online July 27, 2022. doi:10.1136/spcare-2022-003684

Romano A, Capozza MA, Mastrangelo S, et al. Assessment and management of platinum-related ototoxicity in children treated for cancer. 

2020;12(5):1266. doi:10.3390/cancers12051266

Biro K, Noszek L, Prekopp P, et al. Characteristics and risk factors of cisplatin-induced ototoxicity in testicular cancer patients detected by distortion product otoacoustic emission. 

. 2006;70(3):177-184. doi:10.1159/000093776

Cheraghi S, Nikoofar P, Fadavi P, et al. Short-term cohort study on sensorineural hearing changes in head and neck radiotherapy

2015;32(7):200. doi:10.1007/s12032-015-0646-3

Langer T, am Zehnhoff-Dinnesen A, Radtke S, Meitert J, Zolk O. Understanding platinum-induced ototoxicity. 

. 2013;34(8):458-469. doi:10.1016/j.tips.2013.05.006

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Podcasts

In this episode of “The Vitals,” Christine Miaskowski, PhD, RN, discusses research showcasing that adult patients receiving either a platinum-based chemotherapy, taxane alone, or a combined regimen of platinum- and taxane-based treatment may be at risk of hearing loss. 

Are Hearing Tests Necessary For Adult Cancer Survivors?

Most adolescent or young adults with advanced cancer prefer to die at home, according to results of a qualitative interview study published in 

 Unfortunately, the desire of many of AYA patients is not realized with up to two-thirds of AYAs passing away in the hospital setting, underscoring an unmet need regarding death preferences in this population.

“Our data suggest a preference for home death for most AYAs with advanced cancer,” wrote Oreofe O Odejide, MD, assistant professor of medicine and medical oncology at the Dana-Farber Cancer Institute, and co–investigators.

“Unfortunately, this preference is aspirational for many, as the majority die in hospital settings. To ensure that the EOL [end-of-life] experiences of AYAs align with their preferences, robust home-based services for symptom control and logistical/psychosocial support for family caregivers and siblings are imperative: we need innovative strategies that close the gap between preferred and actual location of death to achieve high-quality EOL care for AYAs with cancer.”

In the US, more than 9000 AYA patients die of cancer every year, and existing data suggests that EOL care for may be less than optimal in this population. High-intensity care, frequent hospitalizations, intensive care unit admission, and chemotherapy in the last month of life can all contribute to negative EOL experiences. These are more likely to occur for AYA patients than with older adults or young children. Moreover, most AYA patients die in the acute-care setting. Findings from a 2021 study published in 

 estimated that 69% of AYA patients pass away while admitted.

Investigators sought to better understand patient preferences—specifically, preferential EOL locations.1 Therefore, they conducted quantitative interview studies of AYA patients with advanced disease and compiled responses along with the responses of their family caregivers and clinicians. Interviews occurred between December 6, 2018, and January 5, 2021. Eligible participants were identified from clinical lists, administrative databases, and clinician referrals. The study included a total of 80 individuals: 23 patients, 28 family caregivers, and 29 clinicians.

The interviews revealed that multiple factors influence an AYAs choice of death location. The driving rationale comes from a want to be around family and friends but other reasons for include a desire for comfort, a sense of normalcy, and wanting to be protected from the isolation of being in the hospital.

One participant stated: “Rather than being in a situation where my last days are spent on a hospital bed and my parents and my loved ones have to come to the hospital, I would rather kind of share those experiences in the last days in a home – I would rather pass at home.”

External factors, however, may influence an AYA patient’s decision, and persuade them to elect an in-hospital death. One reason for this may be that there are more logistical considerations necessary for an at-home death. Caregivers were more likely to recognize these logistical considerations, which include need for pain and symptom management.

One caregiver described circumstances surrounding a patient that would influence admission to a hospital being preferential. “Had she experienced a tremendous amount of pain, we would have sought another way of you know either getting continuous IV [intravenous] morphine…or we would have brought her back to the hospital,” the caregiver responded. “And although she wouldn’t have wanted that decision, the pain decision would have superseded the decision to keep her home.”

A clinician backed that sentiment, noting, “Most [individuals] feel it would be nice to be at home, but then the question is: at what cost?… The symptom burden is high here—few [individuals] that I’ve met are willing to be at home at the cost of risk of symptom control.”

Moreover, there is the desire of the caregiver to preserve the home as a place “untouched” by death, particularly for the benefit of a sibling, which may persuade AYA patients to choose a hospital death. One caregiver acknowledged that her family did not want to “mar” their home space and did not want the patient’s younger sibling to witness her brother’s death.

Although most AYAs expressed that they would prefer to pass away at home, they also acknowledged a family member preference and, consequently, they expressed concern about imposing additional trauma on their family members if they choose to stay at home. The desire to experience EOL comfort for themselves, and the need to not to be a burden to their family, created a tension that was identified in the study. Results noted that many AYAs chose a hospital-death specifically to limit the potential burden on their family members.

Lastly, the need for hospice care is at odds with the desire to pass away at home. Although hospice care can be useful in facilitating an at-home death, there are limitations, and some families may opt to bring their loved one in for inpatient hospice care despite patient preferences. For example, a bereaved caregiver reported that their loved one died in a hospice house rather than at home because of inability to access the high level of care needed to facilitate a home death.

Another stated, “One thing I wish is that in-home hospice services would be able to do 24-hour care, not nursing care, but [provide an] aide to stay with the patient. Because I had to put him in a hospice house because he couldn’t die at home because I couldn’t care for him anymore. That was hard for me.”

Although at-home hospice services represent an interesting tactic to try and make at-home deaths feasible, gaps still remain in this type of care and will need to be expanded if families are truly able to take advantage of these services rather than inpatient hospice. Similarly, robust home-based services for symptom control and logistical/psychosocial support for family caregivers and siblings are imperative and warrant further investigation.

Given the stress that surrounds EOL experiences, seeking invocative solutions to improve the level of comfort for these patients is necessary, the authors concluded.

Odejide OO, Fisher L, Kushi LH, et al. Patient, family, and clinician perspectives on location of death for adolescents and young adults with cancer. 

Published online August 18, 2022. doi:10.1200/OP.22.00143

Coltin H, Rapoport A, Baxter NN, etc. Locus-of-care disparities in end-of-life care intensity among adolescents and young adults with cancer: a population-based study using the IMPACT cohort. 

 2022;128(2):326-334. doi:10.1002/cncr.33926.

Innovative strategies are needed to ensure that adolescents and young adults with cancer who prefer to die at home are able to make that choice.

Better End-of-Life Options Are Needed for AYA Patients With Advanced Cancer

Satellite clinical trial sites may help underserved patients circumvent enrollment barriers, however challenges still exist, according to Donna Catamero, ANP-BC, OCN, CCRC.

Catamero, who is the associate director of Myeloma Translational Research at The Mount Sinai Health System, recently presented on the successful launch of 6 clinical trials out of satellite sites associated with Mount Sinai. Since opening, her team has enrolled 3 patients on therapeutic trials, and 10 patients on non-therapeutic trials. Among these patients, 85% are from minority patient populations. Moreover, according to Catamero, nurses play a critical role in helping to establish satellite sites.

“Nurses played a key role in educating staff and helping patients get through [the] politics at our network sites,” Catamero said in a presentation of her experience at the International Myeloma Society’s 

. “The key was to have stakeholders, such as industry, to help us expand our clinical trial portfolio. By attempting to offer clinical trials in these community settings, we're hoping to improve overall outcomes.”

Unfortunately, despite significant advances in the treatment of multiple myeloma the improvements in survival have been less than half for black patients compared with white patients.

 Black patients face a mortality rate that is twice as high as that of white patients.

However, studies have suggested that if black patients had equal access to modern therapies, they would achieve equal or better outcomes than white Patients.

 This reality has put the urgency for clinical trial equity into focus.

Despite the known relationship between race and survival outcomes in clinical trials, most multiple myeloma trials do not report race-based accrual data. Moreover, among trials that do report race and ethnicity, the accrual of non-white patients tends to be about half of the anticipated number.

At Mount Sinai, where this project was launched, disparities are heightened further by the clear discrepancies in patient backgrounds and household incomes. New York City is home to a total population of 8.9 million people, 36% of whom are foreign born. It is believed that over 164 ethnic groups are represented in the city, meaning that hospitals like Mount Sinai should be equipped to adequately serve 164 different ethnic populations.

Unfortunately, addressing the problem of clinical trial accrual is multifaceted. Although not comprehensive, some barriers to enrollment include time and costs. Different clinical trials have different time demands. Traveling to and or from treatment centers can be tedious and time consuming, especially in a city like New York. Adding that to the time spent in treatment can result in a large chunk of time not spent at work. This can be stressful for all patients, but particularly for patients coming from underserved communities. Moreover, the amount of follow-up and additional visits in clinical trial is variable, and patients may be hesitant about signing up for additional copays and visits.

“Driving or taking the subway can take two hours each way,” Catamero said. “It can be a very painful 2 hours. There's also cost. If you're driving, taking a bridge or a tunnel, tolls are $20 going 1 way and parking is never free in New York City. A patient can expect to pay up towards $50 a day to receive care at our center.”

To that end, Catamero and a team of nurse investigators sought to improve accessibility by establishing satellite clinical trials sites throughout New York.

In looking to expand clinical trials to satellite sites, the team recognized that establishing a pharmacy team represented a significant hurdle to building the appropriate infrastructure.

“Pharmacy was a big hurdle for us,” Catamero said. “Brooklyn never had a clinical trial open before outside of COVID-19 vaccine trials, so there was very limited experience with their staff.”

She noted that the satellites would need to be able to receive central lab reports and process research labs. There would also need to be dry ice storing. Research staff were sent to the centers to address these issues.

Staffing also presented a challenge. The team asked physicians to rotate throughout the network sites, physicians rotate throughout the network sites, with nurse practitioners working in tandem to help with the retention and tracking patients throughout ongoing assessments, and monitoring patients’ outcomes. A clinical research coordinater was utilized between network locations and provided support in monitoring eligibility requirements, protocols, processing, transporting, and storing samples and data management.

Although the team has seen initial success, Catamero noted some growing pains that they hope to address moving forward.

First, industry buy-in has been key in making these sites possible, however, garnering interest from industry has been difficult. In addition, traveling between sites has been challenging for staff. The satellite sites have also presented unique educational needs for pharmacy and infusion nurses working at the sites.

Finally, Catamero emphasized the important role that social workers may play in improving satellite site clinical trial operations.

“Patients still have barriers to coming in, even to their local infusion centers,” she said. “Social work was very crucial and was lacking at these sites, scheduling support medical assistants to help with study procedures such as bone marrows [was critical].”

Moving forward, combining the efforts of nurse practitioners, social workers, and research coordinators, Catamero hopes that these efforts will continue to improve equitable clinical trial enrollment at Mount Sinai.

Catamero D. Increasing clinical trial accrual of minority patients by expanding clinical operations at satellite sites: a nursing lead initiative. Presented at: 19th International Myeloma Society Annual Meeting; August 25-27, 2022; Los Angeles, CA. NS-007.

Waxman AJ, Mink PJ, Devesa SS, Anderson WF, Weiss BM, Kristinsson SY, McGlynn KA, Landgren O. Racial disparities in incidence and outcome in multiple myeloma: a population-based study. 

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NCI. SEER Cancer Statistics Review. 1975-2007. Published May 10, 2020. Accessed September 7, 2022. 

Fillmore NR, Yellapragada SV, Ifeorah C, et al. With equal access, African American patients have superior survival compared to white patients with multiple myeloma: a VA study. 

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Donna Catamero, ANP-BC, OCN, CCRC, presented on her experience in expanding satellite clinical trial operations during the International Myeloma Society’s 6th Annual Nursing Symposium. 

Satellite Clinical Trial Sites May Improve Minority Patient Accrual But Challenges Still Exist

Cancer has become a chronic illness for many individuals. Thanks to advances in oncology, the number of long-term survivors is growing. However, this disease often saps patients and, by extension, nurses of their strength.

The spoon theory has been widely used in chronic illnesses such as lupus, but it can also be applied to cancer. The spoon theory is a metaphor: every day we are given a certain number of spoons, (usually 12), which represent our units of energy consumption for the day.

 According to this concept, 1 spoon represents a unit of energy.

 If you use up your allotted number of spoons, you are weakened. If you borrow against the next day’s spoons, you will have less that day. Becoming familiar with this concept is useful to healthcare professionals working in oncology.

Patients with cancer are prone to using up their allotted spoons for the day. This is especially true for those in acute care setting where patients may receive a diagnosis of cancer or are having their disease restaged after surgery. Others may use up their spoons if they are anemic and lack the reserves to function. Also, many times patients are shuttling between visits to interventional radiology for stent or pigtail placement for drainage. They may also be going to CT scans, MRIs and let’s not forget blood draws from their peripherally inserted central catheter or ports. Additionally, to make up for their diminished reserves, patients may receive blood transfusions or electrolyte replacements such as total parenteral nutrition. These procedures wreak havoc with their spoon allotment.

To get spoons or energy back, the patient has to engage in self-care. This can refer to simple pleasures like listening to their favorite music, taking a bath, playing with their dog, or listening to a podcast.

According to spoon theory, you have to calculate how many spoons you used during the course of the day and you can replenish your spoons if you have taken care of yourself that day. This concept regarding energy conservation and restoration is vital for patients who are in battle against cancer.

Christine Miserandino, a writer and health care speaker, originated spoon theory in 2003 as a result of her experiences living with lupus. According to Miserandino, healthy individuals, or those without chronic illness, wake up each day with an unlimited number of spoons. Spoon theory shows how those living with disease have to be careful about using too many spoons and thinking ahead compared with the general population. The backbone of spoon theory has been used to originate related theories, such as fork theory.

 Although spoon theory is related to internal stressors and resources (disease, fatigue) fork theory shows how external factors, like stress, can affect an individual’s energy levels. Following too many “fork pricks” (external stressors), individuals must take time to rest and recover.

In my opinion, these concepts can also be useful for oncology nurses. Nurses also must learn how to conserve and restore energy levels. How many nurses are on their feet all day or night, putting out fires in acute care situations with unstable patients? Hopefully their shift will be quiet, and they can take a food or meditation break to decompress. Of course, if a nurse is on a very busy unit, they will just go on to the next unstable patient. This is where patient assignment mastery comes into play. Hopefully, the charge nurse will not assign 2 unstable patients to the same nurse because of patient acuity needs. The nurse only has so many spoons and their supply will be depleted by the end of the shift.

Overall, I believe that both spoon theory and the related fork theory are key concepts that surgical oncology nurses and licensed clinical social workers can add to their arsenal of weapons. Understanding these concepts is helping, not only when working with this patient population, but in assessing one’s own levels of energy.

Miserandino C. The spoon theory. But You Don’t Look Sick

com. Accessed August 1, 2022. https://bit.ly/3qkLnd2

Beise C. How the spoon theory can help us put a fork in poor communication and self-care.Family & Child Therapy

November 7, 2019. Accessed August 1, 2022. https://bit.ly/3TOWYyT

Peterson AL. The mental illness cutlery drawer: spoons, forks & more. Mental Health at Home. November 24, 2020. Accessed August 1, 2022. 

Spoon theory can help patients with cancer learn to measure and conserve their energy. 

Opinion: Understanding Spoon Theory Is Essential for Oncology Nurses 

Results from the Sexual Health Assessment in Women with Lung Cancer (SHAWL) study highlight the need for health interventions in thoracic oncology care, according to Narjust Florez, MD.

Among 127 participants who had attempted sexual activity within 30 days of completing a survey, 77% reported moderate to severe sexual dysfunction. Of these, 59% (n = 75) had experienced significant issues with vaginal dryness and 26% (n = 63) had experienced vaginal discomfort during sexual activity.

In a direct comparison before and after a diagnosis of lung cancer, there were stark changes in sexual desire and interest (15% vs 31%; 

 < .001) and vaginal pain and discomfort (13% vs 43%; 

Findings from the SHAWL study found that sexual dysfunction rates are high among women with lung cancer. 

Supportive Care