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An Extraordinary Healer essay honoring JENNI CHANG, B.S.N., RN, OCN [VA PALO ALTO HEALTH CARE SYSTEM, PALO ALTO, CALIFORNIA]

Extraordinary Empathy in the World of Oncology

The rates of advance care planning were no different for patients with cancer who were seen in-person or via telemedicine, posing virtual visits as a viable option for vulnerable populations, according to recent research.

“Telemedicine may help physicians overcome physical and logistical barriers to timely advance care planning,” the researchers wrote in their study, which was published in the journal, 

Advanced care planning includes discussions about prognosis, goals of care and end-of-life priorities and, according to the researchers, “has become a quality standard in oncology care.” Prior research published in 

 has shown that advance care planning can decrease unwanted aggressive treatments at the end of life, thereby improving patients’ quality of life in their final days.

Advanced Care Planning Gives Patients ‘Control of Their Care When They Are Most Vulnerable’

The researchers analyzed data from 3,178 with cancer with a high six-month risk for mortality who were treated within the University of Pennsylvania health system. A total of 2,430 were seen in person, and 748 were seen via telemedicine for their first oncology visit.

“We focused on this population because of the high potential impact, and likely differential effect of telemedicine on clinical and patient outcomes compared to a less vulnerable population,” the researchers wrote.

Patients seen in person were more likely to have advanced disease than those seen virtually (53% versus 44%, respectively) and were also more likely to receive care from a general oncologist (41% versus 24%). While most telemedicine appointments were conducted via video call, Black and lower income patients more frequently used the phone.

Findings showed that within a three-month follow-up period, 6.8% of patients in the in-person group had advance care planning discussions, compared with 6% of patients in the telemedicine group. The difference between these two outcomes was not statistically significant, meaning that the researchers could not be sure that there is definitely a difference between the two.

“The ability to virtually meet patients and their family within the comfort of their home may facilitate advance care planning,” the researchers wrote. “Likewise, telemedicine may increase access for vulnerable patients who are too frail to travel to the clinic.”

Additionally, there was no statistically significant difference between the two groups when it came to unplanned hospitalizations, either, which occurred at 20% and 18% in the in-person and telemedicine groups, respectively.

The researchers did find, however, that the method by which patients took their telemedicine visits did seem to have an impact on advance care planning. Advanced care planning discussions were similar between the in-person and phone-based telemedicine groups, but were actually higher in the group of patients who spoke with their clinicians via video call.

“Although this work is exploratory, it suggests the importance of video-enabled telemedicine among racial and ethnic minorities and those with lower income,” the researchers wrote. “Successful implementation of telemedicine in this setting will require efforts to achieve equitable access to high-quality video-based telemedicine platforms.”

Method of telemedicine did not impact unplanned hospitalizations.

“Overall, our findings suggest that vulnerable patients can be managed safely by telemedicine without negatively affecting key components of their care such as advance care planning and acute care utilization,” the researchers wrote.


For more news on cancer updates, research and education, don’t forget to 

Recent research indicates that advance care planning rates are similar for cancer patients seen in-person and via telemedicine, suggesting virtual visits as a viable option for vulnerable populations. Telemedicine can help overcome barriers to timely advance care planning, which is a quality standard in oncology care. The study analyzed data from 3,178 cancer patients at high risk for mortality, revealing no significant difference in advance care planning or unplanned hospitalizations between in-person and telemedicine groups. Video-enabled telemedicine showed higher advance care planning rates, highlighting its importance for equitable access.

The use of telemedicine over in-person oncology visits did not lead to a decrease in advance care planning or an increase in unplanned hospital visits. 

All Cancers

Telemedicine May Help Advance Care Planning in Vulnerable Patients

Skipping some counseling for genetic cancer testing did not increase levels of distress in participants of a trial in which a new remote model could be used for genetic risk assessment, according to the study’s researchers.

, the authors established that the Making Genetic Testing Accessible (MAGENTA) trial showed that omitting required pretests and posttests, or both, for genetic counseling before genetic cancer testing did not increase levels of distress in the participants. The study also found that remote options for genetic counseling and testing could benefit individuals at a lower risk.

According to the National Cancer Institute, genetic counseling is a process of communication with a trained health professional and an individual who is concerned about the genetic risk of diseases such as cancer. The discussion typically includes the individual’s family history and personal medical history, which could lead to the process of genetic cancer testing. 

Pathogenic variants are referred to by the National Cancer Institute as a change in the DNA sequence of gene. This can increase the risk of developing a genetic disease — or cancer — in an individual. Pathogenic variants may be inherited from an individual’s parents or can occur at a point during a person’s life. The National Cancer Institute also noted that “knowing if a person has a pathogenic variant may help prevent, diagnose and treat diseases, such as cancer.” 

 included a total of 3839 participants, all who identified as women and were age 30 or older. Most of the participants were non-Hispanic White and received a college education. Participants were placed into four cohorts.

According to the study, cohort A did not require pretest and posttest counseling, cohort B required only posttest counseling, cohort C was the control group and required traditional pretest and posttest counseling via telephone, and cohort D required only pretest counseling.

The study’s purpose was to determine the effect of pretest and posttest counseling and to see whether posttest counseling would increase levels of distress in participants. The authors of the study also evaluated the effectiveness of remotely delivered counseling and subsequent genetic testing for better accessibility and convenience for individuals. Based on the results, the authors found that remotely delivered counseling and genetic testing could be used as an alternative model for individuals who are at lower risk.

Remotely delivered genetic counseling was through phone appointments, and genetic testing entailed at-home saliva kits. These two remote options for both counseling and testing offered a more beneficial approach to individuals, as they no longer had to make in-person appointments and travel to clinics or hospitals.

The study authors investigated whether the participants from the three experimental cohorts would express differences in distress compared with the control cohort after three months and 12 months.

“In the primary analysis in the family history cohort (cohort A), each of the three experimental arms was noninferior to the control arm for distress at three months. Distress at three months was not significantly different across the arms,” the study authors wrote.

“Each of the three experimental arms was noninferior to the control arm for distress at 12 months,” they wrote. “Similarly, the fraction of individuals with very high distress did not differ significantly between arms at 12 months.”

Similar to the analysis of participant distress, the authors also identified whether baseline depression and anxiety played a role in lower completion of genetic testing.

“In addition to the primary outcome of distress, eliminating pretest and/or posttest individual counseling did not increase anxiety or depression or negatively impact completion rates,” wrote the authors. “Together, these outcomes support and alternative model for genetic testing delivery with pretest information provided electronically and posttest counseling for those with (pathogenic variants) and on demand for those without (pathogenic variants).”

The MAGENTA trial explored the impact of omitting pretest and posttest genetic counseling on distress levels in participants undergoing genetic cancer testing. The study found that skipping these counseling sessions did not increase distress, anxiety, or depression. Remote genetic counseling and testing, using phone appointments and at-home saliva kits, proved effective and convenient, especially for individuals at lower risk. The trial demonstrated that remote models could serve as viable alternatives to traditional in-person counseling, enhancing accessibility without compromising psychological well-being or test completion rates.

Research found that skipping some counseling for genetic cancer testing did not increase distress, which may lead to beneficial remote options.

Skipping Some Genetic Cancer Counseling Shows Similar Distress Levels

Communicating with doctors and care teams about symptoms is essential for patients with cancer who receive immune checkpoint inhibitors, an expert told CURE®.

An immune checkpoint inhibitor (ICI), as the National Cancer Institute defines, is a type of immunotherapy drug that blocks proteins — or checkpoints — made from certain types of immune system cells, such as T cells and some cancer cells. When the drug blocks checkpoints, it allows T cells to effectively destroy cancer cells.

“Because (ICIs are) a relatively newer cancer drug, or a class of cancer drugs, we still have a lot to learn about exactly the kinds of symptoms and side effects and complications that patients have on the medications,” said Patricia Moreno, clinical psychologist and assistant professor from the department of public health sciences at the University of Miami Miller School of Medicine, told CURE®.

Moreno presented on the quality of life and symptomatic toxicities for patients receiving immune checkpoint inhibitors at the 2023 Sylvester Cancer Survivorship Symposium. These “symptomatic toxicities,” she defined, were complications and side effects patients experienced when receiving ICIs, although research has determined that many related symptoms are mild and “very well tolerated” among patients.

She also noted that what patients should know regarding symptomatic toxicities varies from patient to patient.

“It depends a lot on the communication the patient is having with their cancer care team or their oncologist and what they’re told to expect on immune checkpoint inhibitors. I would say the most important thing that a patient can do is ask questions and make sure to advocate for themselves,” Moreno explained.

“(This is) so they really understand what the medication is, how it might affect their body, and then how they can communicate to their team when they are experiencing a side effect or a symptom so that they can address that symptom because we have really effective strategies or treatments, oftentimes to manage symptoms, and that keeps people on their treatments longer, which is exactly what (they) want when a treatment might be working really well for (them),” she said.

Moreno emphasized that with consistent communication between patients and their care teams, patients can receive the best care possible.

“The key takeaway for patients is to make sure that (they) communicate with (their) care team. When they ask, ‘How are you feeling? How are you doing on your immune checkpoint inhibitor?’ (Patients should) tell them, ‘This is what I’m feeling in my body. These are the symptoms; these are the side effects.’

“So that, again, if there’s anything that comes up, we oftentimes have treatments and ways to manage that so that (they) can both live as well as possible while getting an effective cancer treatment… So, the earlier we catch (symptoms) when they’re more mild or more moderate, the better we can do at avoiding bigger complications or issues down the line,” Moreno said.

To continue the flow of communication between patients and their care teams, Moreno recommended patients should ask important questions — an essential way they can advocate for themselves.

“Patients should find out what the care team’s plan is for the treatment of their cancer. So, that means that they should try to understand what the diagnosis is (and) what it means. And if (they) don’t understand what it means, continue to ask questions until (they) understand more about (their) diagnosis, and (they) feel like (they’re) able to describe it to a loved one or friend or a family member,” she noted.

“And then, (patients) should talk jointly about what (their) goals are for (their) care,” Moreno said. “And then once (they’re) on a treatment plan, (they) should also have a very clear plan for communicating around symptoms, side effects, complications (and) anything that comes up so that (they) can always address those as early as possible. And again, avoid any sort of ballooning of issues into bigger issues.”

Effective communication between patients and healthcare teams is crucial for those receiving immune checkpoint inhibitors (ICIs), a newer class of cancer drugs. ICIs work by blocking proteins that inhibit T cells, allowing them to destroy cancer cells. Despite their efficacy, patients may experience symptomatic toxicities, which vary individually. Patients are encouraged to ask questions and advocate for themselves to understand potential side effects and manage them effectively. Early communication about symptoms can prevent complications and ensure patients remain on effective treatments longer.

It is essential for patients who receive immune checkpoint inhibitors to actively communicate with their care teams when experiencing symptoms, an expert explained.

Patients Should Actively Communicate Symptoms While Receiving Immunotherapy

Survivors of cancer who underwent pelvic radiotherapy may cause them to live with low-grade chronic inflammation within the lower intestine about 20 years after treatment. A recent study has been published by researchers at the University of Gothenburg.

, radiotherapy is a high energy radiation that can shrink cancer cells and shrink tumors. This is possible due to x rays, gamma rays, neutrons and protons. Radiation that is used to kill cancer cells and shrink tumors can be outside of the body, or from a device placed near the body.

In order to slow down or get rid of cancer, radiotherapy is necessary. Although it has advanced immensely within the past few years, radiotherapy can still negatively affect healthy tissue where the radiation is taking place. The study noted that cancer survivors involved may have had cervical, prostate or rectum cancers.

The study focused on the side effects of radiotherapy within the lower abdomen in cancer survivors. Radiotherapy within the pelvic area can negatively affect the thin line of mucus that protects the mucous membrane from bacteria. Radiotherapy removes this thin layer, causing bacteria to spread within the body and to the intestine. This may also have an effect on low-grade inflammation that was found within the intestine in patients that had been exposed to radiotherapy years prior.

There were 28 individuals who were analyzed within the study, 24 being cancer survivors. The control group consisted of four patients who did not previously receive radiotherapy. Patients ranged from two years since radiotherapy to 20 years since radiotherapy. The study authors determined that median time between the end of radiotherapy to an intestinal biopsy was five years.

“It can be hard to detect low-grade inflammation,” said Sravani Devarakonda, a researcher at the University of Gothenburg’s Sahlgrenska Academy and lead author of the study. “This is the first time researchers have been able to show with certainty that this is happening in cancer survivors, a long time after pelvic radiotherapy has ended. We saw signs of low-grade inflammation as late as twenty years after radiotherapy.”

Although symptoms were common for survivors who previously underwent radiotherapy, the severity of symptoms ranged from tenesmus (constantly using the bathroom after feeling like the bowels weren’t fully released) to continuous diarrhea, the study established.

Researchers will continue to determine whether low-grade inflammation after radiotherapy causes these symptoms and which symptoms correlate to inflammation. The researchers are also investigating the intestines resistance to radiotherapy to depict long term symptoms for patients.

“Our study subjects included both patients who had received traditional radiotherapy and those who had the more targeted form, IMRT,” Devarakonda said. “We saw low-grade inflammation in both groups. The damage to the surrounding tissue can be limited by IMRT, but there are still long-term inflammatory changes.”

Cancer survivors who underwent pelvic radiotherapy may experience low-grade chronic inflammation in the lower intestine even 20 years post-treatment. Radiotherapy, while effective in shrinking tumors, can adversely affect healthy tissues, particularly the mucous membrane in the pelvic area, leading to bacterial spread and inflammation. A study involving 28 individuals, including 24 cancer survivors, revealed signs of inflammation long after treatment. Symptoms varied from tenesmus to diarrhea. Researchers aim to further explore the correlation between inflammation and symptoms, and the intestines' resistance to radiotherapy.

After receiving pelvic radiotherapy, cancer survivors could live with low-grade chronic inflammation for up to 20 years post-treatment, according to an expert. 

Pelvic Radiotherapy May Cause Chronic Inflammation in Some Cancer Survivors

It’s 2024 and your doctor says that you have cancer.

Will your health insurance give you access to the best possible treatment?

That’s a question over 60 million Medicare recipients should consider during the 2024 Medicare open enrollment period – starting on October 15th and running through December 7th – because age is a significant risk factor for getting cancer.

For people who develop complex cancers, the plan they choose could have a major impact on their eventual survival.

One option for Medicare recipients is Medicare Advantage, the health coverage offered by private insurers. It is usually less expensive than original Medicare, and offers extras such as vision, hearing, and dental coverage. It can be a great choice for many recipients, particularly for people with fixed budgets. About half of Medicare recipients 

But Medicare Advantage plans come with a little-known catch: They frequently have narrow provider networks that do not include the research medical centers that provide access to clinical trials and the most advanced treatment, such as genomic-based precision medicine and CAR T immunotherapies.

In America today, if you have a cancer which requires a relatively straightforward or well-established standard treatment protocol, you can get very good treatment at most community hospitals and oncology practices.

But if you have a complex cancer – one that is rare or caused by a recently identified genetic profile, or requires the coordination of a number of modes of therapy – a narrow provider network may not offer you enough.

Cancer patients with traditional Medicare do have access to Comprehensive Cancer Centers that offer the latest in diagnostics and treatment. But 60 percent of Medicare Advantage plans do not include access to 

 of the 56 NCI-designated Comprehensive Cancer Centers. And even if one of these centers is technically in their network, many Medicare Advantage enrollees will experience barriers when trying to access these pre-eminent centers. 

As a result, people with Medicare Advantage are only one fifth as likely to be treated for cancer at an NCI-designated center than people with traditional Medicare. And they are one third as likely to be treated at any academic medical center.

The implications of this disparity can be staggering.

For some complex procedures, Medicare Advantage cancer patients have 

 than patients with traditional Medicare.

For example, Medicare Advantage patients who have surgery for pancreatic cancer are twice as likely to die in the month after surgery than those with traditional Medicare.

Medicare Advantage patients with stomach and liver cancer are fifty percent 

But the differences in outcomes are not driven by surgical rates alone.

For example, if you are a Medicare Advantage patient and need CAR T cell therapy, you may not have access to it at the hospitals in your network. That can mean the difference between life and death, since CART T cell therapies have increased the success rates of treatment for certain leukemias and lymphomas by 

The same is true of clinical trials. These trials often involve highly promising drugs that won’t be available to the general public for years. If you are in many Medicare Advantage plans, and don’t have access to an academic center, you are far less likely to be enrolled into a clinical trial.

My institution is working with others to advocate for policy changes to include Comprehensive Cancer Centers and other research centers in every Medicare Advantage provider network. But whether or not such reforms eventually take place, the time for seniors to make a very important healthcare choice is now.

If you are a senior with a history of cancer or risk factors that make getting it more likely, or you just want to cover all your bases, you should check to see what cancer centers are available in any plan you consider joining. If you don’t find a plan that includes a cancer center where you would be comfortable receiving care, you may want to consider traditional Medicare, with its access to cutting edge cancer centers.

Medicare recipients, particularly those at risk for cancer, must carefully consider their healthcare options during the 2024 open enrollment period. Medicare Advantage plans, while cost-effective and offering additional benefits, often have limited provider networks that exclude leading research centers crucial for complex cancer treatments. This can result in significantly lower access to advanced therapies and clinical trials, potentially impacting survival rates. Traditional Medicare provides broader access to Comprehensive Cancer Centers, which may be vital for those with complex cancer needs. Seniors should thoroughly evaluate their options to ensure optimal cancer care access.

Andrea Valera, RN, VA Palo Alto Health Care System

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