Christina Izzo

The proper administration of supportive care can have a significant impact on long-term outcomes, including improvements in overall survival, for patients with myelodysplastic syndrome (MDS), according to Thomas Prebet, the assistant director of myeloid malignancy research at Yale Cancer Center.

 interviewed Prebet to gain insight into the importance of supportive care in this disease.

: How does supportive care factor into the treatment of patients with MDS?

: Most patients with MDS are treated with supportive care, including transfusion, hematopoietic growth factors and iron chelation therapy. This is the standard of care for the majority of patients with MDS.

Basically, supportive care is the basis for any kind of treatment that we want to give to these patients. The way we deal with supportive care could have an impact on survival and quality of life of these patients. Interestingly, it’s not only a quality of life issue but also a survival issue. If you optimize the way you give transplant and if you optimize the way you give hematopoietic growth factors for these patients, you may have an impact on survival.

How does iron chelation therapy factor into the care of a patients with MDS?

For iron chelation therapy, it’s a hot topic in the field of MDS. Basically, any patient who needs chronic transfusions may need to be chelated. We know that patients with transfusion dependency will develop iron overload, and will usually have a worse outcome. We know from different studies that the correction of this iron overload can reverse this and improve outcomes.

We need to be careful with what we call supportive care because most of the methods that we have may have some impact on the patient’s outcome. Supportive care is more than supportive in this group of patients, especially when it comes to transfusions.

What are some of the criteria you use for administering chelation therapy?

Chelation is a supportive care method that should be synced with objectives. Usually, we use chelation therapy for patients who have been transfused with more than 20 units of red cell over the period of a few months or a few years. Some criteria for ferritin levels can be debated.

The situation can be different for a patient who is younger — whom you think might be good for transplantation &mdash; who you want to optimize for transplantation. A physcian may overload with transfusions, needing chelation. On the other end, if that physician has an older patient above 95 years, he or she may not need to go to chelation. All risks and benefits should be considered.

The next question facing this process is treatment selection. There are two agents approved for iron chelation: deferoxamine, which is administered intravenously and subcutaneously, and can be really complicated form a logistic point of view and can be associated with side effects. The second approach is, Exjade (deferasirox), which was approved earlier this year.

This agent is easier to handle compared with infusions every day, which was the basis with deferoxamine. It was associated with some important side effects; it could lead to transient renal blockade, serial diarrhea, and some other side effects. It is a good medication and is easier to handle than deferoxamine. It's something that needs to be monitored quite severely in the first month of treatment so that the way the drug is given can be adapted.

There can be such a big focus on the treatment aspect — which agent they are receiving, Revlimid (lenalidomide) or some other treatment &mdash; that side effects can be overlooked. There needs to be education on the supportive care aspect as well. Education on chelation therapy is important.

What are the benefits of new formulation of Exjade?

The new formulation is easier in the sense that it’s just a pill as compared to the former formulation that was a kind of syrup to drink. The new formulation also comes with fewer gastrointestinal side effects and the efficacy seems to be at least equivalent.

One of the things that’s important is if you look at the last clinical trial of Exjade, for example, most of the patients don’t have six months of treatment because they have to stop treatment due to side effects. One of the findings from these studies is that, the better the patient is chelated, the better the outcome is. So if this new formulation improves tolerance and compliance to the treatment, we may even have a better efficacy of the treatment and better outcome. But this still needs to be proved.

The trend for the moment, at least what is expected or logical, is that this new formulation will result in better compliance and better efficacy for patients.

What can be done to help patients manage their disease?

I think the most important thing is that MDS should be considered a chronic disease. It’s sometimes hard to keep focus on all the aspects, especially transfusions. It’s patients that you see every week or every two weeks for more than six months, and we need to be aware and reactive and, in some cases, proactive in order to avoid the complications that can come with transfusions and to try to improve the quality of life of these patients.

Medications that we’re using for supportive care can still have some side effects so we need to follow up with these patients, especially in the first month of treatment.

What are some of the challenges in treating patients with MDS?

There are two groups of patients: those with low risk MDS and those with high risk MDS. Patients with low-risk MDS have a low risk of progression to acute myeloid leukemia. These patients are the ones with long follow-ups over multiple years and for which we have these issues of dealing with long-term treatments and long-term transfusions. In this group of patients, the objective will be to optimize quality of life.

One of the challenges here is that for moment we don’t have any curative treatments, except bone marrow transplantation. And this is only applicable to a minority of patients, for multiple factors, but also since the average age of patients is 70 years.

Another challenge is focused on the other group of patients, which are those with high-risk MDS, or those that are likely to progress to leukemia. These patients have short survival.  If you don’t treat them, the survival will be around 15 to 20 months. With treatment, you can go to a median survival of two years.

We have tried to have effective treatments with this group of patients. But even for patients that have response with treatment, we are still dealing with the issue that we don’t have any definitive treatment. We know that at one point or another, patients will relapse or progress.

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CURE interviewed Thomas Prebet to gain insight into the importance of supportive care in myelodysplastic syndrome.

Supportive Care Can Impact Long-Term Outcomes in MDS

Just as electronic health records revolutionized the healthcare industry for nurses and doctors, patient portals are giving patients new ways to access their healthcare information and communicate with members of their healthcare team.

And while many practices and hospitals across the country offer patient portals to all their patients, those with chronic diseases, such as cancer, seem to benefit the most from the portal.

“Our patients might have a greater need [for the portal] simply because of the nature of their illness,” explained Sheila Ferrall, Director of Nursing Practice, Education and Clinical Effectiveness at Moffitt Cancer Center in Tampa, Florida. “I think it’s very empowering for patients to go in and look at their results."

Patient portals give patients the opportunity to see test results, read their doctor’s notes, access educational information about their disease and even communicate electronically to manage appointments or ask their healthcare team questions.

And patients with cancer seem to like having their medical information at their fingertips.

A recent study conducted by David Gerber, an associate professor of internal medicine at UT Southwestern Medical Center in Dallas, found a sharp increase in the number of cancer patients using MyChart, the patient portal that the hospital uses.

The results found that over a six-year period, the number of patients actively using MyChart each year increased fivefold, while the number of total log-ins each year increased more than tenfold.

Patients most commonly used the portal to view test results (37 percent), view and respond to clinical messages (29 percent), and send medical advice requests (6.4 percent).

Patient portals are fed information from electronic medical records (EMRs). In 2009, the American Recovery and Reinvestment Act provided financial incentives for providers to adopt electronic health record technology and meet meaningful use objectives, but some providers were using EMRs before that.

“Electronic medical records … are a widely implemented and accepted component of patient care and the portal is a key part of that,” Gerber says.

Extending Care Between Patients and Practices

By providing patients with secure 24-hour access to information specific to their health, patients have the time to become more educated about their condition and get more involved in their care.

In fact, the study that examined the use of MyChart at UT Southwestern Medical Center found that 37 percent of all log-ins and 31 percent of all medical advice requests occurred outside of clinic hours.

“It’s really about being more engaged,” says Jennifer Trageser, the associate director of portal technology product management at McKesson Specialty Health. “Empowering the patient in their day-to-day decisions, increasing health literacy…is really important in the oncology space.”

McKesson Specialty Health’s patient portal, My Care Plus, was rolled out in 2012 and now reaches and impacts nearly 218,000 oncology patients across the nation.

My Care Plus syncs up with McKesson Specialty Health’s iKnowMed or iKnowMed Generation 2 EHR platforms so patients can access their vital signs from their visits, see lab results and view summaries of their visits and assigned care plans that were recorded in the EHR.

Trageser explained that although the EHR and patient portals are synced, patients can only see the “common data set,” which consists of demographic data, conditions, vitals, lab results, visit summaries and care plans.

“There is a variety in the patient portal market—some portals limit the data being provided to the common dataset, and other portals expand beyond that dataset to include imaging reports, physician notes, and more,” she says.

By expanding information to the patient, you’re also expanding information to their caregiver, Trageser noted.

“Patients are able to provide access or share their health information with caregivers who may not be able to make every doctor’s appointment,” she says.

Pros, Cons, and the Future of Patient Portals

The idea of providing patients instant and constant access to all their healthcare information, as well as a line of communication to healthcare providers, allows practices to continue to improve healthcare treatment.

Because patient portals allow specific information to be sent to each patient, a triage nurse can send messages to patients reminding them to take their Day 1 oral medication, or an infusion nurse could follow up with a patient about the potential side effects that might occur after their treatment, continued Trageser.

“And this creates a highly personal engagement with that patient…it’s not waiting for the phone call—it’s building a relationship with an electronic way that can shared at any point in time by patients or their caregivers.”

But there are also some potential problems with patient portals.

“I think there are opportunities and I think there are also areas that we need to approach cautiously,” Gerber says.

For example, if patients are given access to test results prior to an appointment with their doctor, they might misinterpret the findings.

“I think it’s very important that we think about how patients are interpreting this information,” Gerber says.

And while the idea of being able to send a message to the healthcare provider might seem like a quick and easy way to get an answer, Gerber cautioned that might not be the case.

He noted that in this day and age, society has a growing expectation that text messages and emails are instant. But when it comes to using the portal to communicate with healthcare providers, messages are not guaranteed to be answered immediately. “To what extent can we ask patients to have the medical knowledge to triage their own questions and symptoms?”

Some of these concerns with patient portals are just extensions of issues in current practice, Gerber explained.

“We’re still not perfect in person or on the phone. All aspects of clinical care in oncology are entities that we are always trying to improve,” he says. “I think as electronic patient portals are used by more and more patients and used more intensively and frequently by those patients, I think we will all grow with this experience to try to optimize this technology.“

Nurses have always been at the center of patient interaction. So it’s no surprise that they have a key role when it comes to patient portals.

“Gerber said that at his practice, it is primarily clinic nurses who manage MyChart. This includes sending messages regarding appointments and prescriptions, as well as responding to and triaging incoming questions from patients.”

Ferrall said at Moffitt, EMRs were put into place about three years ago, and new features were slowly introduced. And while the patient portals are fairly new, the nurses seem to enjoy having the patient portals because they help empower and educate their patients.

“It gives the patient access to information that they often want, and it allows the nurse not to have to be the middle in terms of providing that information,” she says. “Patients can go directly to the portal to access information.”

Web-Based Portals Can Inform and Empower

Black/African-American women had a significantly higher absolute area breast density of 40.1 cm

 in white women. This research was presented at the 2015 AACR Annual Meeting. 

The study enrolled 1,589 black women and 1,256 white women who underwent screening mammography at the University of Pennsylvania from 2010 to 2011. Researchers analyzed all available raw digital mammograms for women who had BMI recorded in electronic medical records at the time of screening.

Data also showed that black women had a significantly higher volumetric density of 187.2 cm

“Since breast density is associated with breast cancer risk, a better understanding of racial differences in breast density levels could help us identify women at the highest risk for breast cancer and target prevention strategies to those women,” Anne Marie McCarthy, PhD, a research fellow at Massachusetts General Hospital and lead author of the study, said in a statement.

Breast density refers to the amount of fibroglandular tissue in the breast when observed on a mammogram. Since the fibroglandular tissue appears as white on the mammogram, it makes it difficult to visually detect breast cancers.

Research has shown that women who have the highest breast density have a four to six times greater risk for breast cancer compared with women with lower breast density.

Although several studies have shown that black women have lower breast density than white women on average, the authors of this study suggest the reason behind that may be partly due to racial differences in BMI, which is inversely associated with density.

Usually, radiologists examine mammograms and assign patients a breast density level, but that assignment can be subjective, McCarthy explained. In this study, which was funded by the National Institutes of Health, researchers used fully-automated computer algorithms to produce both the conventional two-dimensional breast density measurement and a three-dimensional volumetric estimate of breast density. Volumetric estimates of absolute and percent dense tissue were obtained using FDA-cleared tissue.

“Our findings are using a new, quantitative and, perhaps, more reliable way to measure breast density,” McCarthy says.

The mean age of the patients was 57. Results showed that black women had higher mean BMI than white women (32.0 kg/m

 <.001), higher absolute area (40.1 vs 33.1 cm

 <.001), and volume density (187.2 vs 181.6 cm

 <.001) than white women but lower area (19.6% vs 23.5%, 

 <.001) and volume percent density (11.6% vs 13.4%, 

When adjusting for age, BMI, and breast cancer risk factors, black women had higher breast density across all measures (absolute area density β = 0.211, 

 <.001, area percent density β = .0999, 

 = .021, absolute volume density β = 0.242, 

 <.001, volume percent density β=0.221, 

The results also showed that the interaction between race and BMI was significant for area percent (

 <.001) and was near significant for volume density (

 = .085); however, for all three measures, BMI was more strongly associated with density among white women than black women.

The researchers concluded that the significantly higher breast density in black women was not explained by BMI or recognized breast cancer risk. Therefore, racial differences in breast density may have implications for disease risk and prevention strategies.

Follow-up ultrasound screening for women with dense breasts continues to garner interest among advocates and researchers, with 22 states enacting breast density reporting laws and legislation pending in Congress. A study presented at the 2014 San Antonio Breast Cancer Symposium drawing on data from radiology practices in Connecticut (the first state to enact legislation mandating breast density reporting) showed that during four years of ultrasound screening of mammographically normal but dense breasts, the follow-up screening did detect a significant number of breast cancers not discovered by mammogram.

“Our next step will be to see how quantitative density measures and other imaging biomarkers are associated with cancer risk, cancer subtype, and stage of diagnosis by race,” McCarthy says.

1. McCarthy AM, Keller B, Synnestvedt, et al. Racial differences in quantitative measures of area and volumetric breast density. Presented at: AACR Annual Meeting 2015; April 18-22, 2015; Philadelphia, PA. Abstract 6580.

2. Weigert JM. The Connecticut experiment: 4 years of screening women with dense breasts with bilateral ultrasound. Presented at: San Antonio Breast Cancer Symposium; December 9-13, 2014; San Antonio, TX. Abstract S5-01.

A recent study enrolled 1,589 black women and 1,256 white women who underwent screening mammography at the University of Pennsylvania from 2010 to 2011.

Race and Breast Density: Understanding the Risk

A new study has shown that vaccinating adolescent boys may be cost-effective for preventing oropharyngeal cancer, a disease that’s projected to become the most common HPV-related cancer by 2020. HPV, also known as human papillomavirus, is also responsible for most cervical cancers, as well as vulvar, vaginal, penile and anal cancers. 

The results of the study, published early online in 

, estimated a savings between $8 million to $28 million Canadian dollars [$6.5M-$22.5M USD] over the course of a 12-year-old’s lifetime.

HPV vaccination has proven effective against HPV-related disease in both sexes. While policymakers in many countries, including the United States, Canada, Austria and Australia, have recommended HPV vaccination in boys, it is excluded from national immunization programs in many countries worldwide, noted study leader Lillian Siu, of the Princess Margaret Cancer Centre, University Health Network.

“We hope that results from this study would raise awareness and lead to further assessment of this important public health issue,” Siu said in a statement.

For the study, the investigators applied a statistical model to a population of 192,940 Canadian boys who were 12 years old in 2012. Assuming 99 percent vaccine efficacy and 70 percent update, the study found .05 more quality-adjusted life-years (QALYs) and a savings of $145 Canadian dollars [$118 USD] per individual compared with those who received no vaccine.

When adjusting for 50 percent vaccine efficacy and 50 percent uptake, there were .023 more QALYs and a savings of $43 Canadian dollars [$34 USD].

Potential factors that could impact the cost savings of HPV vaccination in boys include vaccine cost, vaccine effectiveness, cost of cancer treatment and survival of patients with HPV-related oropharyngeal cancers.

“We believe this study is important because HPV-related oropharyngeal cancer has increased significantly in incidence, especially in developing countries,” coauthor Donna Graham, also from the Princess Margaret Cancer Centre, said in a statement. “It is projected that by 2020, HPV-related oropharyngeal cancer will become the most common HPV-related cancer in the United States, surpassing cervical cancer.”

A new study has shown that vaccinating adolescent boys may be cost-effective for preventing oropharyngeal cancer, a disease that's projected to become the most common HPV-related cancer by 2020. 

Christina Izzo

Supportive Care Can Impact Long-Term Outcomes in MDS

Web-Based Portals Can Inform and Empower

Race and Breast Density: Understanding the Risk

HPV Vaccination in Boys Found Cost-Effective in Preventing Oropharyngeal Cancer

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