Patients with cancer enrolled in private Medicare plans have less access to high-volume hospitals and face increased 30-day mortality rates for certain surgeries than those who are enrolled in traditional Medicare plans (TM), according to findings published in the 

Medicare Advantage (MA) beneficiaries faced significantly higher 30-day mortality rates than their TM counterparts for gastrectomies (adjusted risk difference [ARD], 1.5%; 95% CI, 0.01-2.9; 

 = .036), pancreatomies (ARD, 2.0%; CI, 0.80-3.3; 

 = .002), and hepatectomies (ARD, 1.4%; 95% CI, 0.1-2.9; 

 = .04). The median cost of index hospitalization and the global 90-day costs of all hospitalizations were significantly lower for MA beneficiaries compared with TM beneficiaries, which was consistent with privatized Medicare offerings.

“MA beneficiaries have significant barriers in accessing optimal surgical cancer care,” wrote Mustafa Raoof, MD, MS, surgical oncologist at City of Hope, and coinvestigators

 “Except for pancreatic operations, MA beneficiaries were more likely to wait longer between diagnosis and therapy compared with TM beneficiaries. Furthermore, MA beneficiaries were significantly less likely to receive care at teaching hospitals, [Comission on Cancer (CoC)]-accredited hospitals, or [National Cancer Institute (NCI)]-designated centers. We also observed a significantly lower access to high-volume hospitals among MA beneficiaries (compared with TM) for lung, esophagus, stomach, liver, pancreas, or rectal operations.”

MA plans are gaining popularity in the United States, according to study authors. These plans can be differentiated from TM by the way the government requires that private insurers limit the beneficiaries’ out-of-pocket spending. These plans also integrate prescription-drug coverage and supplemental benefits, such as dental care, vision, and gym memberships, which is unique from TM. Part of how private insurers provide these services is by restricting beneficiary options to certain in-network providers and hospitals and regulating the use of specialists through utilization-management techniques, including prior authorization.

It was estimated that 29 million Americans were enrolled in privatized Medicare health plans (Medicare Advantage) as of April 2022, comprising 46% of Medicare beneficiaries nationally. Over 6 million patients are California residents, and nearly half (47%) are enrolled in MA plans.

This study looked at a sample of 76,655 patients requiring a cancer operation in California, where cancer care reporting is mandatory. Most evaluated patients (61%) were TM beneficiaries (n = 46,494), fewer (39%) were MA beneficiaries (n = 30,161). The median age was 74 years and just over half (51%) were female. The sample included 31,913 colectomies, 10,358 proctectomies, 4604 gastrectomies, 2895 pancreatectomies, 3639 gastrectomies, 1555 esophagectomies, and 21,691 lung resections.

Insurance played a role in what type of hospital patients were likely to attend. For example, patients with TM were more likely than MA beneficiaries to receive treatment at teaching hospitals (23% vs 8%), CoC-accredited hospitals (57% vs 33%), and NCI-designated cancer centers (15 vs 3%). Additionally, these patients were more likely to undergo procedures at institutions with a higher volume of available beds (median, 374 vs 286), intensive care unit beds (28 vs 24), operating rooms (18 vs 14), and annual inpatients surgical volume (4276 vs 3690). 

Except for esophagectomy and pancreatotomy, MA beneficiaries experienced greater delays (> 2 weeks) between diagnosis and frontline therapy than TM beneficiaries. The percentage of patients who underwent resection within 2 weeks, respectively, was 29% and 22% for lung resection, 36% and 30% for gastrectomy, 26% and 15% for hepatectomy, 45% and 34% for colectomy, and 29% and 22% for proctectomy.

Regardless of operation, TM beneficiaries had more opportunities to receive care at a teaching hospital, CoC-accredited hospital, or NCI-designated cancer center than MA beneficiaries. They were also more likely to receive their operation at a high-volume hospital for higher-complexity operations. The percentage of patients able to have their higher-complexity procedures conducted at a high-volume hospital, respectively, was 22% vs 9% for lung resection, 11% vs 4% for esophagectomy, 31% vs 21% for gastrectomy, 36% vs 8% for pancreatomy, 74% vs 61% for hepatectomy, and 46% vs 40% for proctectomy. Compared with MA beneficiaries, TM beneficiaries were less likely to receive intermediate-complexity operations, such as colectomies, at a high-volume hospital (32% vs 42%).

MA beneficiaries needed to travel more for Herfindahl-Hirschman Index (HHI)-low regionalized operations, including colon, rectum, and stomach operations. The difference between the median distance traveled for these operations were clinically, yet not numerically, significant, (0.6-1 mile), according to investigators. Yet, for even more regionalized operations, or ones with high HHI, or esophagus, pancreas, or liver procedures, those with TM traveled 1.3 times farther than MA beneficiaries, suggesting that TM beneficiaries were more likely to receive care at higher-volume hospitals than MA beneficiaries, even if it required travel, and MA beneficiaries are more likely to receive cancer surgery at a low-volume hospital.

Ultimately, insurance type did not wield significant influence in 30-day mortality rates for lung, esophagus, colon, or rectal operations, although it did for stomach, pancreas, and liver operations. The failure-to-rescue was identified as higher in MA beneficiaries for liver operations alone (ARD, 5.5%).

Complication rates, both serious and total, were higher among TM beneficiaries for lung, esophagus, colon, or rectal operations, but were not different between the 2 beneficiaries for liver, stomach, or pancreas operations. TM beneficiaries were also more likely to have a prolonged length of stay compared for lung, liver, colon, or rectal operations, and they were also more likely to be discharged to another facility, as well as more likely to be readmitted.

“Our data demonstrate that managed care imposes decreased mobility for more regionalized operations,” study authors concluded. “Although MA beneficiaries incur less hospital costs, limited access to high-volume hospitals for liver, stomach, and pancreas operations may explain significantly worse postoperative outcomes after adjusting for covariates. For policymakers and insurers, these data suggest that ensuring access to high-volume hospitals for MA beneficiaries needing complex cancer surgery may improve short-term surgical outcomes.”

Raoof M, Ituarte PHG, Haye S, et al. Medicare Advantage: a disadvantage for complex cancer surgery patients. 

. Published online November 10, 2022. doi:10.1200/JCO.21.01359

Articles

Private Medicare beneficiaries face high access barriers and increased mortality rates following oncologic resection than patients with traditional Medicare plans. 

Private Medicare Plans Lead to Worse Oncologic Surgery Outcomes vs Traditional Medicare

Pediatric patients who receive central nervous system (CNS)-directed treatment for acute lymphoblastic leukemia (ALL) may be at an increased risk of neurocognitive problems as survivors, according to findings published in the

. Specifically, patients at high-risk of developing CNS involvement and receive high cumulative doses of triple intrathecal therapy (ITT) experience worse cognitive decline than those who receive a low-risk ITT treatment.

Overall, patients who received CNS-directed therapy demonstrated significantly inferior intelligence (

 = .0087) compared with age-normative expectations. No significant differences in neurocognitive function were observed among patients who did or did not receive intensified ITT in the low-risk treatment group. However, in the standard-to-high risk treatment group, treatment with intensified ITT was associated with poorer working memory (

 = .0403), as well as elevated ratings of inattention (

 = .0245) compared with age-normative expectations.

“We found that 3 years after diagnosis, a significant proportion of the overall group of survivors showed elevated risk for problems in attention, working memory, learning and memory, and fine motor coordination,” wrote Lisa M. Jacola, PhD, Department of Psychology, St Jude Children’s Research Hospital, and co-investigators, in the study. “The results from caregiver ratings showed elevated risk for problems with attention, executive function, and adaptive independence. Regardless of treatment approach, survivors of childhood ALL treated with chemotherapy only have elevated risk for neurocognitive problems. These findings also highlight the complexity of neurocognitive outcomes and the need for research into non–treatment-related neurocognitive risk factors.”

The authors noted that findings may be used as a tool to “inform risk-directed neurocognitive screening and intervention that is feasible across settings,” and that the Psychosocial Standards of Care Project for Childhood Cancer guidelines recommend neurocognitive monitoring start at the time of therapy through survivorship.

ALL is the most common childhood malignancy and represents 25% of pediatric cancers. Treatment approaches, including replacing cranial radiation therapy with intrathecal chemotherapy for CNS prophylaxis, have yielded relatively positive global cognitive function with survivors.

The St Jude Total Therapy 16 clinical trial (Total 16) showed that a higher dose of PEG-asparaginase and early intensification of ITT— methotrexate, hydrocortisone, and cytarabine—helped improve CNS control in children with newly diagnosed ALL. Patients who received this treatment experienced a significantly lower 5-year rate of CNS relapse compared with a control group from the St Jude Total Therapy 15 study (1.8% vs 5.7%, respectively). In an extended analysis, investigators reported on the impact of intensified ITT on neurocognitive outcomes.

The study included 400 patients with ALL who were categorized as either low risk, standard risk, or high risk. Remission treatment was a combination of prednisone, vincristine, daunorubicin, and PEG-asparaginase, followed by cyclophosphamide, cytarabine, and a thiopurine. Patients in all groups were treated with 4 courses of high-dose methotrexate and mercaptopurine, followed by antimetabolite-based continuation therapy—which included 2 cycles of reinduction therapy.

On the first day of continuation treatment, all patients were randomly assigned to receive either PEG-asparaginase at 3500 U/m

. All patients were administered pulses of dexamethasone and vincristine every 4 weeks as part of continuation therapy (low-risk, 8 mg/m

 per day). In addition, patients were classified as having standard-to-high risk therapy also received PEG-asparaginase every 2 weeks. This was interrupted with pulses of doxorubicin for the first 20 weeks of continuation treatment and was followed by 3 rotation drug pairs.

Overall, patients received 120 weeks of continuation therapy. No patients on the study received prophylactic cranial radiation therapy.

The number of ITT doses that a patient received was dependent on their CNS-risk status, as well as their age, and other presenting characteristics. Patients with low CNS-risk status were prescribed 13, 19, or 21 doses. However, patients with standard-to-high-risk status received 16, 25, or 27 doses. In each arm, patients who were at greatest risk for CNS relapse were prescribed the highest dose level available for their arm.

Patients completed a neurocognitive assessment when they completed 120 weeks of continuous treatment, which was typically about 3 years post-diagnosis.

Compared with normative expectations, caregivers reported that their children had greater problems with attention (

 = .001). They also reported less independence with activities of daily living (

Patients who were standard-to-high risk not only experienced worse neurocognitive function than the general population but demonstrated worse performance in working memory (

 = .0465) than patients who were low-risk.

In the low-risk group, male patients performed worse on global intelligence processing speed (

 = .0117). These patients also had higher rates of executive dysfunction (

 = .0089) as well as adaptive independence (

 < .0001). Similarly, patients with public insurance or no insurance, had lower global intelligence (

= .0084), and higher rates of inattention (

In the high-risk group, males also had scored lower in working memory (

 = .0026) and processing speed, as did patients with public or no insurance in the following domains: processing speed (

Notably, in the standard-to-high-risk patients, treatment with greater than 27 ITT doses yielded lower working memory, (

= .0328), and greater executive dysfunction (

= .0245), compared with 26 or fewer doses. In this patient subgroup, the most prominent deficiencies included working memory (43.1%), fine motor skills (52.5%), and learning or memory skills (29.7%).

“Patients in the standard-to-high risk arm treated with greater-intensity CNS-directed therapy additionally had elevated risk for inattention and executive dysfunction according to caregiver ratings, illustrating the functional impact of these difficulties in daily life,” study authors concluded. “By contrast, no impact of intensified CNS-directed therapy was evident among patients treated on the low-risk arm. This may suggest a threshold for ITT, with/without systemic therapy, affecting neurocognitive function.”

Jacola LM, Conklin HM, Krull KR, et al. The impact of intensified CNS-directed therapy on neurocognitive outcomes in survivors of childhood acute lymphoblastic leukemia treated without cranial irradiation. 

. Published Online November 2, 2022. doi:10.1200/JCO.22.00263

Patients who receive high cumulative doses of triple intrathecal therapy may be at an increased risk of neurocognitive problems.

Intensified CNS-Directed Therapy Worsens Neurocognitive Function in Pediatric Patients With Acute Lymphoblastic Leukemia 

Providing oncologists with a baseline geriatric assessment (GA) summary with guidelines to manage toxicities may help reduce symptom burden in older patients with advanced cancer, according to an analysis of a national cluster randomized clinical trial (NCT02054741), published in the 

Among 623 patients with available follow-up data using the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), fewer patients in the GA intervention arm (n = 296) reported grade 2 or worse symptomatic toxicity compared with those in the nonintervention arm (n = 327; 88.9% vs 94.8%; 

 = .035). Similarly, the rate of patients who experienced grade 2 or worse core symptom toxicities as defined by the National Cancer Institute (NCI), was lower in the intervention group (83.4% vs91.7%; 95% CI, 0.860-0.962; 

 = .001). A lower percentage of patients in the intervention arm reported grade 2 or worse symptomatic toxicities in every measured category except decreased appetite.

Overall, the results for grade 3 toxicity were comparable but were ultimately statistically insignificant (

“This study is one of a very few to report patient-reported symptomatic toxicities as an outcome in a randomized controlled trial,” wrote Eva Culakova, PhD, MS, of the department of Supportive Care in Cancer, at University of Rochester Medical Center, and coinvestigators, in the study. “Previously, PRO-CTCAEs were evaluated in trials examining the efficacy of therapeutic agents in advanced prostate cancer and non–small cell lung cancer. The results reinforce the feasibility of collecting PRO-CTCAE longitudinally from older adults with advanced cancer and aging-related conditions.”

More than a quarter of new cancer diagnosis are for patients who are 75 years and older. Unfortunately, this patient population is typically underrepresented in clinical trials. At the same time, older patients with advanced cancer often experience a high volume of treatment-related symptomatic toxicities.

This analysis leveraged data from the GAP70+ trial, which was a nationwide study conducted by the University of Rochester NCI Community Oncology Research Program. Community oncology practices were randomly assigned to GA intervention or usual care.

The age range of participants was from 70 to 96 years and the median age was 77 years. Forty-three percent of participants were women, 88% were White, 59% had either a lung or gastrointestinal cancer, and 27% had received prior chemotherapy.

Between 2014 and 2019, investigators enrolled patients who were at least 70 years and who had what the investigators deemed as incurable solid tumors or lymphoma, had at least 1 geriatric domain impairment besides polypharmacy, and who were about to start treatments known for high rates of toxicities (grade 3-5).

Prior to initiating treatment, patients completed the PRO-CTCAEs, which evaluated the severity of 24 symptoms, 11 of which are classified as core symptoms. The NCI has identified fatigue, insomnia, pain, anorexia, dyspnea, cognitive problems, anxiety, nausea, depression, sensory neuropathy, constipation, and diarrhea as 13 cores symptoms. Anxiety and depression were not included in the PRO-CTCAE because these symptoms are covered in the GA assessment.

Participants completed the follow-up assessments at 4 to 6 weeks, 3 months, and 6 months into treatment.

In both arms, patients underwent a GA before initiating treatment. However, in the intervention arm, oncologists received a GA summary and management guideline for each enrolled patient. Oncologists in the nonintervention arm did not receive such recommendations but were notified of positive screenings for depression and cognitive impairment.

Notably, more patients in the GA intervention started treatment with a reduced dose whereas more patients in the nonintervention arm required dose reductions during treatment.

A total of 706 patients provided PRO-CTCAE data at baseline, 340 of whom were allocated to the GA intervention group and 366 of whom were allocated to usual care, 86.1% of whom reported at least 1 moderate symptom, and 49.7% of whom reported severe or very severe symptoms at regimen initiation.

Patients who had gastrointestinal cancers (

 = .043), a lower performance status (Karnofsky performance score ≤ 80, 

 = .002), or a GA domain impairment in nutrition (

 = .048) were also less likely to continue providing PRO-CTCAE throughout their treatment.

“This analysis provides evidence that a GA intervention can decrease the prevalence of symptomatic toxicities as measured by patient-reported outcomes,” study authors concluded. “Future trials should examine whether GA-based models of care that integrate symptom monitoring and management can further improve outcomes of older patients with advanced cancer and aging-related conditions.”

Culakova E, Mohile SG, Peppone L, et al. Effects of a geriatric assessment intervention on patient-reported symptomatic toxicity in older adults with advanced cancer. 

. Published online November 10, 2022. doi:10.1200/JCO.22.00738

Providing oncologists with a baseline geriatric assessment summary with guidelines to manage toxicities may help reduce symptom burden in older patients with advanced cancer.

Geriatric Assessment Intervention Helps Reduce Symptom Burden for Older Patients With Advanced Cancer 

, Ellen Miller, MSN, FNP-BC, a nurse practitioner with Vanderbilt University’s Radiation Oncology Survivorship Clinic, shares her experience with a 26-year-old woman who wanted to get pregnant after undergoing chemoradiation for stage II extranodal natural killer T-cell lymphoma of the nasal cavity as a teenager. Miller underscores why some patients may not choose or be able to pursue fertility preservation when they receive a cancer diagnosis, and what follow-up conversations might be necessary for survivors who have family building goals following cancer treatment. 

References and resources are provided below. 

“When I talked with her, I asked her, specifically, ‘Were you offered fertility preservation?’ And she said, ‘Absolutely.’ [But] she declined, she said, ‘I was 19, I didn’t think I wanted kids.’ But she had [since] met her husband, a wonderful man, and decided that she wanted to have kids.” 

“The out-of-pocket [cost] for fertility preservation is $10,000 to $15,000, on average. That’s hard for [anyone], not to mention a young [woman].” 

“Not only can chemotherapy damage existing eggs, but it can also lead patients to have early or premature menopause.” 

“If patients were to have left-sided chest radiation, [for] a lymphoma or maybe even a breast cancer, we would do some cardiac monitoring, since both the chemotherapy and the radiation can be damaging to the heart, and pregnancy can cause the heart to work harder.” 

“[The] trajectory for her experience was pretty standard, and we were thankful for that. But there are some reasons why some women would need further monitoring.” 

Improving Onco-Fertility Conversations With Adolescents and Young Adult Patients With Cancer

Fertility and Family Planning: Supportive Patient Conversations

Quality Oncology Care: Discussing Fertility Preservation for Patients With Breast Cancer

Fertility Preservation Guidelines Urge for Early Discussions With Young Patients with Cancer

Jennifer Levine on Fertility Challenges in Survivors of Childhood Cancer

Gwendolyn Quinn Discusses Fertility Concerns in Childhood Cancer Survivors

Let's Talk About Sex, Fertility, and Intimacy After Cancer

Adolescent and Young Adult Patients Face Unique Needs, Challenges

Is Chemotherapy an Emergency When Fertility Is at Risk?

Female reproductive health. CureSearch for Children’s Cancer. Accessed November 15, 2022. 

Having a baby after cancer: pregnancy. American Cancer Society. March 2019. Accessed November 15, 2022. 

Fertility facts. Leukemia & Lymphoma Society. November 2014. Accessed November 15, 2022. 

Quick guide to fertility preservation. July 2022. Accessed November 15, 2022. 

Cardonick EH. Overview of infertility and pregnancy outcome in cancer survivors. UpToDate. July 24, 2019. Accessed November 15, 2022. 

Podcasts

In this episode of "The Vitals," Ellen Miller, MSN, FNP-BC, talks about meeting a patient who realized she wanted to get pregnant after undergoing chemoradiation as a teenager.

Oncology Nursing Stories: Pregnancy After Lymphoma Chemoradiation 

Psychiatric distress and existential distress are associated with poor outcomes in patients with advanced cancers and treatment options such as psychotherapy have demonstrated limited effectiveness, according to Stephen Ross, MD.

Approximately 30% to 40% of patients with advanced cancers will experience psychiatric distress such as anxiety and depression, but pharmacologic interventions have demonstrated limited effectiveness, Ross noted. He added that up to 50% of patients will experience existential distress including death anxiety and there are no pharmacologic agents approved to combat this.

“[Psychedelics are] a class of drugs that, in terms of their molecular neuropharmacology, all activate their agonis of the serotonin [5-HT]2α receptor [and] if you block this receptor, you obliterate [an individual’s] subjective experiences,” Ross who is director of the NYU Langone Health Psychedelic Medicine Research and Training Program in a presentation during the nursing track at the 

 CFS®. “[These drugs] have effects on the glutamate system and we’re coming to find that it appears they can repair disrupted neurons in the prefrontal cortex and their effects on neuroplasticity through the glutamatergic system is emerging as a potential neurobiological mechanism of action.” Ross added that the effects of psychedelics on dopamine and the adrenergic nervous system are not addictive.

Psychedelics have been used by indigenous peoples for over a thousand years and lysergic acid diethylamide (LSD) was first studied in humans in 1947. Although there were approximately 40,000 participants partaking in 1000 studies conducted between 1950 and 1970 on end-of-life anxiety, addiction, and behavior, “the war on drugs” in the 1960s and association with recreational use restricted the study of psychedelics; agents such as LSD and psilocybin fell under the Controlled Substances Act of 1970.

However, culture began to shift once more in 1992 when Rick Strassman, MD, pioneered studies on the hallucinogenic tryptamine drug N,N-Dimethyltryptamine (DMT). Additionally, NYU’s Psychedelic Research Group, which was formed in 2006, and several institutions today are researching agents such as psilocybin and LSD for anxiety, depression, as well as addiction. Ross said that Johns Hopkins, UCLA, and NYU are coordinating research on psilocybin.

A crossover NYU study (NCT00957359) evaluating the effects of niacin demonstrated that after treatment with psilocybin plus psychotherapy, patients with advanced cancer had improved quality of life (QOL), reductions in anxiety and depression levels, and meaningful spiritual experiences. The crossover study originally published in 2016 with follow-up data from 2020, demonstrated that 1 day after receiving psilocybin patients (n = 29) experienced reductions in anxiety and depression that endured, suggesting long-term sustained improvements. There was a reduction in existential distress as well as suicidal ideation and improved QOL vs the niacin placebo. Patients were excluded from the study if they had a predisposition to major mental illness.

“These participants said that these were among the most meaningful, most spiritual experiences of their entire lives,” Ross said. “[They were] very memorable up there with having children and they continued to draw on these profound experiences.” The results suggested that the mystical experience experienced may be a candidate of physiological mechanism of action.

Patients who had stages I, II, III, IV, and other were represented in the study at 17%, 17%, 28%, 34%, and 3%, respectively. Sites of cancer included were breast (31%), reproductive (28%), digestive (17%), lymphoma/leukemia (14%) and other (10%). Additionally, chronic adjustment disorder with anxiety and depressed mood reported was 28%, chronic adjustment disorder with anxiety was 62%, and generalized anxiety disorder was 10%.

The agent had low medical toxicities and was not associated with overdose deaths or organ damage. Ross highlighted that the main harm with the drugs in the psychiatric realm. Adverse events (AEs) reported were mild elevations in blood pressure (76%), headache/migraine (28%), nausea (14%), transient anxiety (17%), and transient psychotic-like symptoms (7%). No serious AEs were reported.

In the follow-up study published in 2020, 16 patients were alive and 15 partook in a self- reported analysis, all reporting sustained reductions in death anxiety, anxiety, and depression. At a follow-up of 4.5 years, 71% of patients (n = 14) said that the psilocybin-assisted therapy was one of the most meaningful and spiritual experiences of their lives.

In July 2022, NYU received a grant from the National Cancer Institute and National Institutes of Health to launch a phase 2/3 multicenter trial on psychedelic assisted therapy for 200 patients with advanced staged cancer. The trial will occur at the Bellevue Cancer Institute with an aim to increase diversity as the 2016 NYU study included many Caucasian (90%) women (62%) in the study population.

Psilocybin is primarily made synthetically under good manufacturing practice standards that are governed by the FDA, but select companies extract psilocybin, which is the main psychoactive ingredient, from psilocybe mushrooms. Research will be focused on the mechanism of action relating to psilocybin’s neurobiological effects and physiological constructs that may be driving therapeutic benefit will be examined as well.

Ross S. Psychedelic-assisted psychotherapy to treat psychiatric and existential distress in advanced cancer. Presented at: 40th CFS®; November 9-11, 2022; New York, NY.

Agin-Liebes GI, Malone T, Yalch MM, et al. Long-term follow-up of psilocybin-assisted psychotherapy for psychiatric and existential distress in patients with life-threatening cancer. 

. 2020;34(2):155-166. doi:10.1177/0269881119897615

Psychiatric distress and existential distress are associated with poor outcomes in patients with advanced cancers and treatment options such as psychotherapy have demonstrated limited effectiveness.

Distress in Advanced Cancer May Be Alleviated With Psychedelic-Assisted Psychotherapy

When it comes to health literacy, many people tend to hold some key misconceptions, according to Sandra Kurtin, PhD, ANP-BC, FAPO.

“People think about health literacy as: can you read?; Can you write?; Are you literate? But it's so much more than that,” Kurtin, who is a hematology/oncology nurse practitioner at the University of Arizona Cancer Care, as well as assistant professor of clinical medicine, and adjuvant clinical assistant professor of nursing at the University of Arizona, and who completed who her dissertation on health-related self-management, said in an interview 

. “Literacy is about taking in information, synthesizing it, and then applying it toward managing your health.”

In a presentation on health literacy during the 

 CFS, Kurtin noted that functional health literacy comprised of reading ability, writing ability, and basic language skills. Functional health literacy is what most people think of when they hear the term “health literacy.”

However, as the healthcare landscape has changed, oncology practices have shifted from a more paternalistic model to a system where patients and caregivers are increasingly expected to take responsibility for more aspects of their health care. With the role of digital technology continuing to involve, and more and more cancer care occurring in the outpatient setting, health literacy as a concept has had to expand to reflect the different levels of cognitive, interpersonal, and social skills needed to adequately mange one’s health during cancer care.

In the modern era, health literacy has a direct outcome to health outcomes, Kurtin added, noting that health literacy influences access to and utilization of health services, interactions with health care providers and systems, symptom-management at home, caregiving skills, and the ability to participate in shared decision-making.

According to Kurtin, there may be people who cannot read, yet demonstrate a superior command on synthetizing health-related information. At the same time, there may be patients with an impressive academic background who struggle to do so.As an oncology professional, it is therefore important to assess where a patient or caregiver stands and use these indicators to help improve understanding.

“That may mean understanding schedules and all the logistics that it takes to see a provider,” she said. “In cancer care, [patients and caregivers have to understand] how to call someone if they need help, who to call, and how to call them. They need to be taught to truly be part of the team. To me, that's what health literacy is: it means you are able to participate in self-management and be part of the team.”

Self-management refers to a patient’s ability to handle the variables that occur across the cancer continuum, for instance, their ability to handle transitions in care settings, or their ability to “master” a threat to their stability, such as a treatment-related toxicity. According to Kurtin, self-efficacy is at the core of human agency, behavior change, and decision making, and consequently, a patient’s ability to manage their health has a significant impact in helping them feel stable and in control of their health. 

She also noted that patient-centered communication is at the root of communicative health literacy and health self-management.

Different pillars of information require different communication techniques. For example, the disease information represents 1 pillar. When a patient is first diagnosed, they are likely asking the following questions: What do I have? What does it mean? How am I going to be treated—and what will that mean?

Moreover, they may have concerns about managing their therapy, understanding adverse effects (AEs), as well as preventing and mitigating the severity of those AEs.

The second pillar considers the fact that the patient is a whole person, Therefore, there may be myriad of specialists involved to help make that person whole. Patients must be taught how to effectively communicate with the rest of the heath team, from the cardiologists, the endocrinologist, to the primary care provider.

Delivering a diagnosis, assigning treatment, and noting the date of the next follow-up visit is insufficient,” Kurtin said. “We give [patients] some information, they get pamphlets, but we need to teach them how to be part of the health care team.” she said.

“As a provider, as a nurse practitioner, and as an oncology nurse for several years before that, I know that patients often tell the nurses way more than they tell the provider,” Kurtin said. “[This is] because they’re sitting in the chair for whatever amount of time and you get to talking and they may be afraid to say something to the physician or the advance practice provider, or because the visits are short, and [during that time] they are really focused on their physical exam and their labs and the details. And sometimes providers forget to get into the experience of it, and really get to their questions during clinical visits.”

“Nurses are really critical in that sense; they are a conduit for that communication,” she said. “But they also tend to have more time with a patient that isn’t so focused on all those details, but more on them. They’re critical to really providing that education.”

Nursing-led education is especially important in light of where most patients get their information. According to a study published in 

the Journal of Medical Internet Research,

 83% of patients with chronic conditions (including cancer) and internet access use the internet to look for health information, 79% of caregivers have accessed to the internet and, among those with internet access, 88% use the internet to find health information.9 Moreover, as 85% of American adults own a cell phone, including 58% of adults aged 65 or older, the tendency to utilize the internet for health-related questions is continuing to trend.

Kurtin concluded her presentation with strategies to assess and improve health literacy and shared decision making. First, nurses should seek to know and understand the patient, including their culture, beliefs, and goals; their support network; their preferences for learning; their barriers to self-management; and their access or barriers to care. She encouraged nurses to be intentional and to set expectations. This means teaching patients how to prepare for a clinic visits, how to ask questions and whom to ask, and specific instructions involving their schedule, treatment plan, self-medication options, and reportable signs and symptoms that they are their caregiver need to monitor. Patients should also be provided with evidence-based information. 

“The other thing that I really try to emphasize with the people that I work with is the importance of the consistency of message,” Kurtin concluded. “We all [should] be learning from the same sources and lifting the whole team up. What we say to the patient needs to be consistent from person to person—because if you have conflicting information that [negatively] affects health literacy. Nurses are important in the sense of carrying on the message and being able to reinforce the education for whatever prescribed therapy the patient is receiving.”

Kurtin SW. Assessing health literacy to improve patient education. Presented at: 40th Annual Chemotherapy Foundation Symposium; November 9-11, 2022; New York, NY and virtual.

Batterham RW, Hawkins M, Collins PA, Buchbinder R, Osborne RH. Health literacy: applying current concepts to improve health services and reduce health inequalities. 

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Kurtin SW. Mobile health technology, technology engagement, and communicative health literacy in older adult cancer survivors. 2018. Unpublished dissertation.

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Lorig K, Laurent DD, Plant K, Krishnan E, Ritter PL. The components of action planning and their associations with behavior and health outcomes. 

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Lorig KR, Ritter P, Stewart AL, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. 

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Osborne RH, Batterham RW, Elsworth GR, Hawkins M, Buchbinder R. The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). 

. 2013;13:658. Published 2013 Jul 16. doi:10.1186/1471-2458-13-658

Champlin S, Mackert M, Glowacki EM, Donovan EE. Toward a Better Understanding of Patient Health Literacy: A Focus on the Skills Patients Need to Find Health Information. 

. 2017;27(8):1160-1176. doi:10.1177/1049732316646355

Tennant B, Stellefson M, Dodd V, et al. eHealth literacy and Web 2.0 health information seeking behaviors among baby boomers and older adults. 

. 2015;17(3):e70. Published 2015 Mar 17. doi:10.2196/jmir.3992

During the 40th Annual Chemotherapy Foundation Symposium, Sandra Kurtin, PhD, ANP-BC, FAPO, discussed improving health literacy in oncology care. 

Health Literacy in Cancer Care Begins with the Nursing Staff

Bringing equality to cancer care remains a focus and building upon the foundation of guidelines to usher in a more inclusive environment for patients will require making appropriate modifications to care and the enrollment process of clinical trials,” according to Narjust Florez, MD.

“Cancer care equity means that regardless of your sexual orientation, your racial background, the language you speak, where you come from, or your socioeconomic status, you are receiving the standard of care that follows the guidelines,” she said. “ It [mean]s that we are able to provide equal care for everyone and also tailor to their needs as we are different, and our populations are different.”

 CFS® titled, “Cancer Care Equity & Survivorship” Florez spoke with 

® to highlight key takeaways for the audience. These include addressing difficult situations that may arise at the clinic and how to handle them to give patients the best care. In our discussion, Florez, a thoracic medical oncologist and associate director of the Cancer Care Equity Program at Dana-Farber Cancer Institute, also noted that she will identify the 3 principles of cultural humility, how to apply them to everyday practice for all cancer diagnoses regardless of stage, and what steps oncologists can take to help create an environment where all patients are given the same care and opportunities to participate in clinical trials.

Although there are often misconceptions of what cancer survivorship means with the assumption that it’s the period after patients have completed treatments, Florez noted this definition excludes patients with metastatic disease. “Cancer survivorship establishes [patients] have a cancer diagnosis until the end of their journey or the moment of death,” she said.

In cancer care, the entire cancer continuum is affected by inequities. Education and fostering an understanding of these issues in the treatment paradigm are steps that can be taken to bridge the gap in knowledge, but there is also an intersection “between survivorship and equity,” which is often overlooked.

“We often talk about equity at moments of diagnosis [or with] biomarker testing, but we forget about the intricate parts of cancer survivorship and how certain populations can be discriminated or excluded from the health care system during their cancer survivorship,” Florez said.

“Everybody should be involved in cancer equity,” she added. “This is not taking away from the majority group of patients—it is that everybody deserves equal care. Race, socioeconomic status, or English proficiency shouldn’t affect that.”

Florez explained that the lack of inclusion in clinical trials reaches beyond racial and ethnic disparities, affecting subgroups including younger patients—who often have their experiences invalidated—as well as minorities, women, and older adults. Additionally, in lung cancer trials, women and older adults are often excluded.

“It’s unethical not to provide these patients the option to participate in a clinical trial. Drugs can take years to get approved or for patients to get access. Being part of a clinical trial allows those patients to get access to drugs early on, not only drugs, but drugs combinations,” Florez said.

In the United States, White men represent up a large percentage of clinical trial participants. However, when key groups of patients are not included, the efficacy data will not accurately reflect all patient populations. This results in unknown adverse events and complications with treatments for minority subgroups.

“It is like you’re trying to create a wedding dress that would fit every bride in the world—it is impossible,” Florez said. “We come in different ways, shapes, forms, and [with varying] metabolisms. A lack of inclusion of all these populations generates very homogeneous data that unfortunately drugs get approved and then we learn about [adverse] effects. We learn about lack of efficacy in these populations after the drug is approved and after we know they have worse outcomes.”

She noted, for example, that when the agent tamoxifen (Soltamox) was developed, most of the clinical trial participants were White women. The exclusion of Black women resulted in suboptimal outcomes after treatment. Although today oncologists recognize that the tolerability and metabolism of the drug affects different populations differently, many patients suffered from not being included in the clinical trials—a setback that could have been avoided.

“Racial minorities [such as] Black, Hispanic, Native American, Native Hawaiian, and Pacific Islander populations [represent] around 40% of the US population,” Florez said. When we ask for inclusion, we’re not asking to include a 1% subgroup, [we want] 40%. When you add women and older adults, over 50% of patients with cancer [belong to a minority group]. We’re excluding the majority instead of including them.”

Florez noted that a shift in terminology toward more compassionate language can go a long way. For example, saying “patients with lung cancer” rather than “lung cancer patients” emphasizes the patient first and helps avoid defining someone by their disease. Bringing inclusivity to care also encompasses the process of training new doctors and establishing clinical trials throughout the community and continuing to foster those community relationships. Additionally, certain exclusion criteria remain a challenge in ensuring that clinical trials are representative of the whole population, making it more critical that trials are brought to the community setting.

Embracing the concept of cultural humility by learning from peers is also a key step in understanding how others view healthcare. Florez noted that previously the term cultural competency was used to demonstrate understanding of another person’s culture, but it is difficult to truly be competent in another’s culture. Therefore, shifting to the mindset that every day you can learn from the people around you to better understand their cultural beliefs and practice being culturally humble, will help physicians also recognize how their patients view healthcare. According to Florez, it is key “to listen and follow our patients’ cultural beliefs and healthcare beliefs because that's what dictates health [and] how you see health in your own eyes.”

“Survivorship is seen with different lenses, and that cultural beliefs and healthcare believes affects our patient survivorship experience,” Florez said. “We need to listen and understand instead of judging; judging is no way to practice medicine. For some cultures complimentary medicine is part of survivorship, so having an open communication with your patients, we ensure that they let you know that they're taking any complimentary medicine what their goals in survivorship are.”

“Every day we have more and more survivors so it's important that we understand how each of them see cancer survivorship and their life moving forward,” she added.

Dana-Farber Cancer Institute’s Steps Toward Inclusion

“I’m in an ivory tower institution and at Dana-Farber and Harvard Medical School, we need to come down and get to meet our community partners. It is no longer you and the doctor, and this is what I do. We’re in this together,” Florez said.

In 2012, the Cancer Care Equity Program at Dana-Farber was established to expand access to treatments, clinical trials, and educational programs as well as facilitate community outreach. Patients are referred to the Dana-Farber clinics by a primary care physician when there is a possibility of a cancer diagnosis regardless of insurance and location of residence.

Florez described the program as a direction intervention where Dana-Farber oncologists treat and assist patients following referrals. She also highlighted the Patient Navigator Program that was created to assist patients with the health care system.

“It has been very successful; we have navigated, in the last year, over 170 patients to assure they have access to care. For example, [imagine] that you have a mutation, but you cannot afford the [targeted agent]? [Imagine] you survive your cancer, but you are not able to get the CT scans that require follow-up to see if the cancer is back? [It is important to] be there in the clinic to help [mitigate these issues] and continue to help with patient navigation.”

She concluded by noting that time-bound interventions may not be as effective for patients as long-lasting interventions. The long-lasting interventions allow oncologists to learn from the community and continue to be a part of the care process and time-bound interventions do not give the time necessary to foster a relationship with the community. She noted that there can be a lack of trust when patients see their doctors come in for a short span of time and leave, not remaining a part of care.

Narjust Florez, MD, emphasizes why oncology health care professionals should bring a sense of urgency to ensuring that clinical trials represent all patient populations. 

Inclusivity Must Be Made A Priority in Clinical Trials and Cancer Care

Teddi Mellencamp, celebrity known for her appearance on the

, is currently battling stage 2 melanoma. She discovered this at her 3-month checkup after an initial melanoma surgery. Right now, Mellencamp is using her celebrity platform to stress the importance of returning for checkups as instructed to do that by a physician.

I live in Florida which has been ranked second in the nation for new melanoma cases.

In 2018, there were 7940 cases of melanoma diagnosed in Florida, and it is estimated that nearly 1 out of every 10 Floridians receive a skin cancer diagnosis in their lifetime. Although I have seen many cases of metastatic melanoma in the hospital where I work, melanoma awareness should extend beyond Florida. It is a common disease which affects individuals all over the country.

In 2022, the American Cancer Society estimated that there were 99,780 new cases of melanoma and approximately 7650 cases are expected to be fatal.

At the very least, 3-month checkups after an initial diagnosis are required, which is why Mellencamp returned to the dermatologist. The American Society of Clinical Oncology recommends that physical and skin examinations be performed every 3 to 6 months for the first 2 to 3 years following surgery and annually thereafter.

 For some patients, a chest x-ray, CT scan, MRI, and/or PET-CT scan may also be recommended.

Mellencamp originally received a diagnosis of stage 0 melanoma, also known as in situ, in March 2022. This was not her first 3-month checkup and it was during the most recent appointment that new findings near the original spot were discovered. In addition, a PET scan revealed lymph node involvement1. At the time of writing, she is currently scheduled to receive genetic testing.

Mellencamp has a huge Instagram following of 1 million fans and she is posting her photos and updates about her treatment plan. Her hope is that other patients with melanoma will take her lead and return to the doctor in a timely fashion. Many times, in the hospital setting, patients become what is known as “lost to follow-up.” I have seen this more times than I can count. For RNs and social workers, the risk of patients not returning to their oncologist or primary care doctor for screenings or later check-ups is a serious reality. Patient education and discharge instructions are something that we are all familiar with and that cannot be stressed enough to patients. 

Celebrities can be huge in raising awareness. For instance, celebrity shows like Stand Up To Cancer have a huge impact.

 Every 2 years, Stand Up To Cancer (SU2C) produces a roadblock televised fundraising special, supporting urgently needed research and new treatments for cancer. The last program aired in 2021 during the middle of the Covid-19 pandemic. The program highlighted all the research this organization has completed in the past decade and featured performances by noted Hollywood stars. The show is coproduced by Reese Witherspoon and her husband, Jim Toth, who is a talent agent as well. The program also showcased survivor stories. The mission statement of this program is “collaborative, multidisciplinary, multi-institutional scientific cancer research.”

Celebrated reality star Teddi Mellencamp is using her Instagram as a platform to stress the importance of follow-up visits for patients with melanoma.

Supportive Care