Tag Archives: patient-centered care

Just Breathe—Listening to the Patient’s Perspective

October is Breast Cancer Awareness month. In this guest blog post, breast cancer survivor Meredith Goldberg shares her perspective on the importance of making space to “just breathe.”  

By Meredith Goldberg

There was a moment when the voice on the other end of the line told me, “I’m sorry to tell you this, but you have cancer,” that I thought for sure that I was part of a very elaborate prank.

Breast cancer? Me? I’m only 32 years old. They must have the wrong number. They must have the wrong person.

“Ms. Goldberg, are you there?” the voice on the line asked.

No such luck.

As the nurse began telling me what I needed to do next, the biopsy that needed to be performed, the surgeon that needed to be found, I stood in the kitchen of my best friend’s house, frozen. I should have been writing down her instructions. I should have put her on speaker so my best friend could have heard any of this info, but I didn’t. I was in shock.

This was the first in a string of moments during my cancer “journey” (for lack of a better word) where I was inundated with information that eventually just escaped my brain. And it was all information that I needed, information that was crucial to my course of treatment and subsequent wellness routine.

As I moved through my cancer “journey,” I found that this happened to me often. I would be sitting with my surgeon, my plastic surgeon, my radiologist, my naturopath, my whomever, and suddenly I was staring out the window with the “Farmer in the Dell” on a loop in my head. It wasn’t because I was bored; far from it. These were the people tasked with keeping me alive, the people making sure that I made it to my 33rd birthday, and beyond. I wanted to listen, really I did, but I became so overwhelmed on certain occasions that I just mentally shut down.

The argument could be made that I should have spoken up. I should have said, “Excuse me, can you repeat that?” and that is an accurate statement. But there is something about sitting across from a medical professional that can be super intimidating, especially if you are a person that up until the age of 32 had never even had a cavity.

It wasn’t until I had what I like to call “the talk” with my oncologist about my course of chemotherapy that I first experienced one of my doctors taking a step back. He could sense the fear in my face.  He could see the tears streaming down my cheeks as he told me that I was about to undergo 12 rounds of chemo, 6 Herceptin-only rounds that would have no effect on my body, but that the 6 rounds of Taxotere, Carboplatin, and Herceptin that would precede the Herceptin-only therapy would leave me completely bald.

“Ok, that’s enough for today,” he said as he closed my ever-expanding file. “You’ve had enough. We can talk more next week. I don’t want to overwhelm you.”

He was a little too late with the overwhelming, but I appreciated the break.

From that point on, I learned that I had every right to say, “Hey, you know what? I’ve had enough.” And to my surprise (and delight) my doctors honored my feelings and took a step back.

At the end of the day, I always appreciated the sense of urgency that was applied to my treatment and the time that was put into creating my care plan, but what I appreciated even more was when we closed my file for the day, sat back and just took a deep breath.


Meredith Goldberg is the author of From Cocktails to Chemotherapy: A Guide to Navigating Cancer in Your 30’s, now available on Amazon.

Staying the Course: The Role of Oral Oncology Nurse Navigators

By Virginia Vaitones, MSW, OSW-C

The development and use of oral agents in treatment for oncology and blood disorders has exploded over the last decade and half. Today, these agents bring many benefits to patients and cancer care staff, but along with those benefits come challenges.

Then . . . and Now
Thinking back to 2001, for example, when capecitabine, the first oral chemotherapy for the treatment of metastatic colorectal cancer was approved, Medicare covered 80% and the beneficiary’s co-insurance was 20%. A patient could simply take the prescription to the local pharmacy and get it filled. The relatively modest financial impact and the ease with which the patient could access the medication made me excited about the use of oral agents. And at the time, there was much discussion about oral agents being the treatment of choice in the future.

Nearly two decades later, we now have more than 50 U.S. Food and Drug Administration-approved oral anticancer agents.  Over that same time span, as we all know, our healthcare landscape has become increasingly complex, as have our anti-cancer therapeutic regimens. Currently, capecitabine is 1 out of only 5 oral chemotherapy that is covered by Medicare at 80%. Patients and providers today often face challenges in accessing and affording costly new oral agents. Patient understanding of and adherence to complex treatment regimens can also be a barrier to effective treatment. As a result, ensuring quality care for patients receiving oral agents often requires a coordinated effort by innovative and creative cancer practices and programs.

The September/October edition of Oncology Issues highlights two such programs. One program is a large physician practice in central New York with an in-house dispensary; the other is a large outpatient hospital network serving two states, Kentucky and Southern Indiana, also with an in-house dispensary. The first step for both was consulting with their stakeholders to identify how care needs to be delivered and monitored. In both instances, on-going patient support and education were identified as key in establishing trust and compliance with the patient and their caregivers. The answer for both programs? Creating an oral oncology nurse navigator program that ensures care coordination, provides a single point of contact for patients and providers, and has led to improved patient care and satisfaction.

As we engage in the complex delivery system of value-based, patient-centered care, the Association of Community Cancer Centers continues to develop tools and resources for cancer care providers seeking to implement or enhance their oral oncolytic programs. Explore peer-to-peer resources, including webinars, white paper, and patient education materials, available through the ACCC Education initiative Steps to Success: Implementing Oral Oncolytics.

Approximately 25-30 percent of the new cancer treatments in the pipeline are oral agents; cancer programs and physician practices will continue to need a well-coordinated team effort to ensure patient safety and satisfaction.


Virginia Vaitones, MSW, OSW-C, is a past president of the Association of Community Cancer Centers (ACCC)  and the Association of Oncology Social Work (AOSW). She is currently serving as chair of the ACCC Editorial Committee. 

The 34th ACCC National Oncology Conference, Oct. 18-20, offers the Oncology Pharmacy Education Network (OPEN) Pre-Conference, including a session on a comprehensive, collaborative, pharmacist-led oral chemotherapy program. Learn more here.  View the full conference agenda.

Chemotherapy Drug-Specific Education: Putting Information at the Patient’s Fingertips

As we continue to better understand the many diseases encompassed under the name, “cancer,” we are also seeing an increase in the number and complexity of anti-cancer treatments. These exciting advances are taking place while cancer programs are striving to empower patients with education about their diagnosis and treatment journey and continually improve the patient experience of care. In this guest blog post, Dr. James Weese, vice president, Aurora Cancer Care, describes his program’s 2017 ACCC Innovator Award winning approach.

By James Weese, MD, FACS

The Challenge
Oncologists, nurses, and other cancer care staff across the country work tirelessly to find the best way to deliver a patient’s treatment plan, including the type of chemotherapy treatment recommended and side effects patients may experience. In the aftermath of hearing the words, “You have cancer,” the life-changing ripple effects of that diagnosis can make it challenging for patients and their families to absorb all the details and fully understanding the treatment plan that’s ahead.

At Aurora Cancer Care, we wondered how we could provide better information in a consistent manner to patients across our large geographical area. Information that could be delivered in the office and reviewed in the comfort of the patient’s home. We offer cancer care in 19 communities from the Wisconsin-Illinois border all the way up to Marinette, Wisconsin, and diagnose nearly 8,000 new cases each year.

That’s a lot of people who need to hear consistent messages and in a way that’s convenient for them.

Our team at Aurora Cancer Care set out to address this challenge while creating a more meaningful experience for patients and their families. Under the leadership of Kerry Twite, MSN, RN, a certified oncology clinical nurse specialist with Aurora Cancer Care, a series of more than 125 educational videos were developed to provide a more personalized experience to patients. Four key principles guided the development of the video series:

  1. All patients need basic information about chemotherapy prior to treatment.
  2. Most drugs today are given in combination with other drugs.
  3. Patients want to share educational information with family and friends who may not be able to attend each appointment.
  4. Patient education from nursing teams can vary depending on multiple factors, including available time, location, and number of other potential interruptions during the session.

The Video Solution
With these tenets in mind, our team developed more than 125 chemotherapy educational videos featuring Aurora Cancer Care physicians, nurses, and other staff. Each education video a patient receives includes three videos:

  • First, a chemotherapy video explains basic principles of chemotherapy, including how it is administered (oral or intravenous), the different types of drugs, and potential side effects and complications.
  • Then, a video provides specific information about each drug the patient will receive.
  • Finally, a “Cancer SOS” video, details for patients how to manage their care at home and when to call their physician or go to the emergency room.

All the educational videos are housed on a password-protected website. When patients receive their treatment plan, they are emailed a link and password to the specific drug treatment that they will be receiving. Patients can then watch the video before their next appointment in the comfort of their home, and they can also share the video with family and friends who may have questions. Patients can then come to their next appointment with specific follow-up questions. Patients and families can access and watch each video as many times as they wish.

Learn more on our education program in this video.

Results
Patients have shared with our nursing team how helpful they’ve found these videos in preparing themselves (and their families) for the road ahead. More engaged patients mean higher patient satisfaction scores, and we’ve certainly seen that too, though it’s very early in the roll-out of the video series to see a major shift.

Our video series has also allowed nursing staff to focus on other educational tasks during the patient’s appointment while still ensuring consistent educational information for patients is provided throughout the treatment process.

At Aurora Cancer Care, our focus rests solely on the delivering the best care possible to patients throughout our region and helping them fight and overcome the disease. We are honored to be named the recipient of a 2017 ACCC Innovator Award for our patient educational video series, and hope it might inspire other cancer centers to explore similar educational tools for patients.

Learn more about how we developed our video series during our presentation at the ACCC 34th National Oncology Conference, Oct. 18-20, in Nashville, TN.


James Weese, MD, FACS, is vice president, Aurora Cancer Care, Milwaukee, Wisc.

Meet all of the ACCC 2017 Innovator’s at the ACCC 34th National Oncology Conference in Nashville. Browse the full agenda. Early bird registration rates run through Monday, August 21.

Creating a Navigation Intake Assessment Tool

By Tricia Strusowski, MS, RN

Compass pointing at answers-SMALL      “I want to be aware of the navigator and support services as soon as possible.”

This is a frequent response from patients when asked about the optimum point in the cancer care journey to learn about navigation and support services.

And yet, during a first visit (or intake interview) with a patient, navigators may question how much to review. Where is the balance between too much information and not enough?  Based on my experience in care coordination and patient navigation, here’s my perspective on creating and using an intake assessment tool.

Number 1 Rule:  Assess if the patient is ready for this discussion. First, provide support. Let the patient and his or her family take lead in the conversation. Listen. Then, based on your assessment, ask the patient and family if they are ready to review the support services and their specific needs. Once you receive their permission, you can then initiate the intake assessment process.

Each cancer program should have a consistent process for assessing and educating patients and families about the cancer program and support services.  A well-crafted intake assessment tool can be used for all cancer disease sites and should include the following:

  • Role of the navigator and the support staff at your cancer center
  • Mini assessment of immediate support service needs
  • Preferred learning style for education
  • Questions that prompt a conversation on what the patient knows about his or her cancer
  • Questions to elicit from the patient specific concerns, goals, and family concerns
  • Family, medical, and surgical history
  • Mini symptom and behavior risk assessment
  • A listing of national and community resources (usually included in patient’s treatment journal).

Gathering this essential information at the time of your initial visit with the patient will establish a strong foundation for the multidisciplinary team. The navigator’s assessment process is an opportunity to begin the discussion about goals of care and/or goals of their treatment—a pillar for providing patient and family-centered care. Further, identifying patients’ preferred learning style and using it across the continuum sets them up to succeed in understanding their cancer and treatment plan. This information can be shared at tumor conferences, multidisciplinary meetings, huddles, or via email if a secure environment is established.  It is also vital to support the navigator role in educating the patient and family consistently, as well as providing an important resource tool for navigators who may be called on to cover for a colleague. An assessment tool is a key component for a consistent foundation to navigation, but health literacy training and patient education teach-back methods can enhance the process and support staff success in educating patients and their families.

Assessing the immediate needs of the patient and family, while providing education and support, establishes a patient-centered approach and lays the groundwork for a strong bond between the patient, family, the navigator, and the support services.

View a sample navigation intake assessment tool. You are welcome to revise this tool as needed for your cancer program.


ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

The upcoming 34th ACCC National Oncology Conference, Oct. 18-20 in Nashville, Tenn., features multiple sessions focused on optimizing patient navigation services to improve the patient experience, and more. View the conference agenda.

Creating a Caregiver Toolkit: 24 Tips for Caregivers

This is the final post in a two-part series on creating a toolkit for caregivers.

By Tricia Strusowski, MS, RN

Hands offering supportA recent symposium on Palliative Care in Oncology also called attention to the importance of ensuring that the needs of cancer patients’ caregivers are recognized. “Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”1  Caregivers are tasked with daily activities in the home and at work, potentially child/elder care, appointments, transportation, medication administration, meals, and medical procedures needed by the patient just to name a few.  We need to ensure that we are discussing the needs of the caregiver, as well as those of the patient, on a routine basis.

As navigators, we can provide education information for caregivers, support groups, or educational programs.  Make the caregiver a high priority in your navigation program.

Here are 24 practical tips that patient navigators can share with caregivers to help them through the process.

  1.  Give yourself and your loved one time to adjust to the diagnosis.
  2.  A positive attitude is beneficial for you and your loved one.
  3.  Giving care to a loved one with cancer requires patience, flexibility, courage and a good  sense of humor.
  4.  Good communication is essential to learning how to best work with your loved one.
  5.  Plan special times together away from the routine of treatment, such as a special evening  out for dinner, a movie or play, etc.
  6.  Talk about the future.  Hope is very important.
  7.  Being a caregiver can reveal hidden strengths and enrich your family life.
  8.  As a caregiver, you can choose to take the primary caregiver role or, depending on the level  of support from family and friends, divide it between two or more persons.
  9.  Being a caregiver can affect you emotionally, physically, and financially. For guidance, speak  with your cancer program’s social worker.
  10.  To better understand your loved one’s diagnosis, treatment and progress, be an active  participant during clinic visits.
  11.  Stay organized (e.g., use a journal or notebook during your loved one’s appointments).
  12.  Encourage your loved one to engage as much as possible in normal daily activities.
  13.  Give yourself permission to feel emotions about your loved one’s situation, and confide in a  friend or counselor who can provide insight and support.
  14.  Set up a list of activities that your family or friends can sign up to do weekly or monthly.
  15.  To help reduce your stress, make time for regular exercise, meditation, or some other form  of relaxation.
  16.  If care is long-term, arrange for extended periods of relief (e.g., take a vacation).
  17.  Attempt to maintain as much of your routine as possible, but recognize that you may need  to alter some of your daily activities if you are the primary caregiver.
  18.  Take advantage of caregiver support groups and credible websites for resources and  support.
  19.  Taking care of YOU is important too. Get adequate rest and nutrition, and take time for  personal care.
  20.  Select funny movies to watch together. Good humor is healthy for the body and soul.
  21.  Allow yourself private time to do nothing, or something important to you.
  22.  Spiritual support through prayer or the guidance of a spiritual leader can be good  medicine.
  23.  Designate a family member or friend who can help field phone calls regarding your loved  one’s progress.
  24.  If you have children in the home, assign them age-appropriate tasks to accommodate the  necessary changes in the household routines.

Source:  http://cancer.ucsd.edu/coping/resources-education/Pages/patient-tips.aspx
____________________________________________________________________________________

1 Doyle C. Palliative care for caregivers: Implementing caregiver support programs. Oncol Pharm. November 2016;(9)6. Available online at http://theoncologypharmacist.com/ton-issue-archive/2016-issues/november-vol-9-no-6/16928-palliative-care-for-caregivers-implementing-

Other Caregiver Resources are available from:
American Cancer Society
National Cancer Institute

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Patient-Centered Cancer Care: Personal Pain Goals

By Susan van der Sommen, MHA, CMPE, FACHE

Stethescope with idea light

Pain relating to a cancer diagnosis is one of the most feared symptoms by patients. Pain is subjective and can be attributed to multiple factors: spiritual beliefs, physical pain, and psychological, or social issues. Additionally, pain is a common occurrence that can dramatically affect a patient’s quality of life during and after cancer treatment.

A 1993 study performed by the Eastern Cooperative Oncology Group  (ECOG) notes that 86% of practitioners felt their patients were under-medicated for adequate pain control and only 51% felt their practice controls patients’ pain effectively. Poor pain assessment, a practitioner’s reluctance to prescribe, and a patient’s unwillingness unwillingness to take the medication were reported as barriers.

More recently, in 2014 the Journal of Clinical Oncology published a landmark study by David Hui and Eduardo Bruera that discusses an evidence-based approach to personalized pain assessment and management that engages patients in identifying a personal “pain goal” they find acceptable.

As cancer programs and clinicians strive to improve upon the delivery of patient-centered oncology care, the need for continuing practitioner and patient education related to management of cancer-related pain is clear.

Education was one of the many factors considered by the team at Park Nicollet Oncology Research and Health Partners Institute in Minneapolis, Minnesota, when they instituted their quality improvement (QI) initiative in 2014 focused on pain control in their cancer patient population. Patient satisfaction and out-of-pocket costs for patients were other factors, as they realized that they weren’t meeting their patients’ goals with regard to their level of pain control and that the high cost of some pain medications was resulting in high out-of-pocket costs for patients. The ultimate goal of the Park Nicollet team was to improve their patients’ quality of life through improved pain control and minimizing side effects while curbing out-of-pocket costs.

One of the most innovative and patient-centered approaches Park Nicollet took in its QI initiative was documenting a patient’s personal pain goals. A study published in 2012 notes that the assessment is entirely feasible in a busy outpatient setting and that patients are fully capable of establishing their desired pain relief on a scale of 1-10. The team at Park Nicollet experienced the same results. They increased documentation of their patients’ personalized pain goals from 16% to 71% in one year. Today, approximately 85% of patients report that they have achieved their pain goal. Read the full story of their experience here.

Allowing patients to determine their comfort level – with the appropriate education, of course – is one more way cancer centers can put their patients at the center of their care and encourage genuine shared decision-making.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.

ACCC Expresses Serious Concern Over the AHCA

By Leah Ralph, Director of Health Policy, ACCC

U.S. CapitolOn May 4, 2017, the U.S. House of Representatives narrowly passed the American Health Care Act (AHCA), a bill that would repeal and replace key portions of the Affordable Care Act (ACA). The bill now heads to the Senate, where it faces significant concerns over the projected decrease in coverage and increase in cost, and will likely undergo a substantial re-write.

While the bill faces uncertainty, the Association of Community Cancer Centers (ACCC) remains very concerned about the impact the AHCA, as currently written, would have on cancer patients’ ability to access comprehensive, affordable health insurance coverage. The bill violates a number of ACCC’s health reform principles, which were central to our recent advocacy efforts on Capitol Hill.

Previous Congressional Budget Office (CBO) reports estimate that 24 million more Americans will be left without coverage under the AHCA, while disproportionately increasing out-of-pocket costs for elderly, low-income Americans in the individual and non-group markets. Recent amendments to the bill also weaken protections for patients with pre-existing conditions, like cancer, and the requirement that insurers cover defined Essential Health Benefits, such as cancer screenings. The current legislation also effectively rolls back the Medicaid expansion and proposes to fundamentally restructure the Medicaid program, inevitably shifting costs to the states and squeezing Medicaid benefits for low-income cancer patients across the country.

ACCC will continue to work with Congress to advocate for meaningful health reform policies that protect patient access to appropriate, affordable health insurance coverage and decrease costs for the patient and the healthcare system.

ACCC urges its membership to contact their Senators opposing the bill as currently written.

Patient Navigation: Creating a Toolkit for Caregivers

The first post in a two-part blog series focused on support for caregivers.

by Tricia Strusowski, MS, RN

Two hands offering support

Several years ago, I facilitated a Patient and Family Advisory Council at our cancer center.  Our patients and families provided us with great insight on our program and helped us create our yearly goals.  On one occasion, one of our family members said, “Hey, what about us? The patients get these great journals, but we need resources too.”  This became our next project.  Two important takeaways from our experience:

  • Don’t Reinvent the Wheel: In creating a toolkit for caregivers, first keep in mind that there are excellent caregiver resources available through national organizations, so there is no reason to reinvent the wheel.
  • Be Concise: Keep your information short, educational, and practical. Our advisory council and countless focus group participants at many cancer programs have said, “Don’t give us so much information! If I get too much, I don’t read anything.”

For navigators interested in putting together a caregiver toolkit, read on for some basic but very good information to share with caregivers.

Remind caregivers that “the care you give yourself is the care you give to your loved one.” The stress of caregiving can take an emotional and physical toll. Caring for someone you love with cancer is undoubtedly difficult. The stress of caregiving can often manifest itself both emotionally and physically.  While caregiving is a rewarding experience that can strengthen the bond between you and your loved one, 60 percent of caregivers report symptoms of depression and other painful signs of strain.

Physical effects of caregiving can include:

  • Sleep disturbances
  • Weight fluctuation
  • Fatigue
  • Stomach/digestive problems (cramping, constipation, gas, heartburn, etc.)
  • Headache
  • Weakened immune system
  • Skin changes

Emotional effects of caregiving can include:

  • Depression
  • Anxiety
  • Feeling of isolation
  • Withdrawal
  • Substance abuse
  • Mood swings/irritability
  • Lack of concentration/memory

While your main concern is surely that of your loved one, it’s vital to care for yourself as well during this difficult time. If you experience any of the symptoms listed above, contact your physician and ask what your healthcare provider suggests. Fatigue is usually the first and most common complaint of caregivers, so ask your doctor about effective ways to manage your fatigue.

Encourage caregivers to ask for help. Provide some practical tips, such as the following:

  • You may have had offers of help with everyday tasks such as running errands, getting groceries, making a meal, taking your loved one somewhere, etc.  At first, most people are reluctant to accept these offers. Consider that friends, family, and neighbors really want to help. People will often say, “If there is anything I can do, let me know.” Take advantage of the offer!
  • When asking someone for help, you may want to go over a list of things you need assistance with, letting them choose what they’d like to help with.
  • Some people report being the sole caregiver serves to increase stress and may cause tension within the family. One caregiver’s solution to this problem was to create a weekly calendar where family members could record the tasks they performed for their mother with cancer. This way, tasks could be spread out evenly among her children.

Offer some coping strategies for the caregiver, including:

Set Boundaries. Primary caregivers tend to absorb the entire caregiving role. Care recipients often go along with this, preferring the care of the primary caregiver to that of a less familiar family member or a stranger.  You cannot do everything; set limits on what you can do yourself and what tasks can be delegated to others.

List things you need for self-care. Make a list of activities that will provide a pampering break from your caregiver responsibilities. Give your morale a boost by such activities as taking a hot bath, exercise, going out for a meal, or reading a book.  Post this list as a reminder to yourself and others in the household.

Plan for respite care. Obtaining those short breaks for self-care requires a plan for others to care for your loved one. Your plan should include the type of care required, hints/suggestions on giving the care so that routines are not severely altered. The plan should also include how often and for how long a time period the respite caregiver will be used.

Make time for laughter. A funny movie, a visit from a fun-loving friend, reading a book authored by a humorist, sharing a good joke can really help lighten things up. Humor helps keep frustration in perspective and minimize anger.

Keep in touch with friends. When caring for a loved one, the primary caregiver’s social life is often the first thing to go. You may think you do not have either the time or energy for keeping up with friends; however, it’s been shown that caregivers who remain socially active experience less depression and physical illnesses. Socially active caregivers are less overwhelmed by the responsibilities than their counterparts who turn down social invitations and lose contact with friends.

Shift gears. When you begin to feel rushed, you need to slow down. Researchers have found that hurrying often actually slows down caregiving activities. For example, rushing can led to delays caused by dropping items, spilling liquids, and misplacing keys, just to name a few. Try to slow down during caregiving and take time to relax throughout the day.

Keep it in perspective. Take time to read the morning paper or listen to the news. Staying abreast of what is happening in your community and the world helps put your problems in perspective. If the major topics of conversation in the house are focused on the health and care of your loved one, plan to set time aside when the conversation centers on some other topics. Mealtime is a time when this works well. Everyone participating in the meal can agree in advance to discuss other topics.

Plan for occasional indulgences and rewards. We all need some occasional pampering to maintain both physical and mental health.  Take time for your favorite snack, listen to music, or just take some “alone time” and enjoy whatever makes you smile.

Join support groups.  Members of a support group offer you understanding at a level others cannot because they are going through a similar experience.  They have real-life experiences to share including tips on how to cope.

Source: Caring to Help Others, A Training Manual for Preparing Volunteers to Assist Caregivers of Older Adults, 2000.


Stay tuned for Part Two: 25 Tips for Caregivers.

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Next Steps for Value Frameworks?

by Amanda Patton, ACCC Communications

ACCC17-Value Framework Panel (2)The mantra of “moving from volume to value” is ubiquitous in healthcare today.  So what do cancer programs need to know about evolving value frameworks in oncology? Attendees at the ACCC 43rd Annual Meeting, CANCERSCAPE, in Washington, D.C., heard real-time updates on two of the leading frameworks—ASCO’s work-in-progress Value Framework  and NCCN’s Evidence Blocks™.

Both value frameworks aim to be tools used in support of patient―physician shared decision-making according to panelists Stephen Grubbs, MD, FASCO, Vice President of Clinical Affairs, American Society of Clinical Oncology, and Robert Carlson, MD, CEO, National Comprehensive Cancer Network.

ASCO’s Value Framework was not built on drug pricing, but to have a discussion with a patient on potential financial toxicity and the benefit of the treatment in the context of how much the treatment will cost the patient, explained Dr. Grubbs. ASCO’s framework uses three primary parameters to calculate value: clinical benefit, toxicities of treatment, and cost. “Our goal at ASCO is to develop a tool that could be customized with information for each individual patient,” said Dr. Grubbs.

After receiving more than 400 comments on its original Value Framework draft, ASCO published a revised version in May 2016.  Grubbs made clear, however, that ASCO’s framework is still a work in progress. “It’s not yet ready for use,” he stressed.

In 2017 ASCO is working on improving the framework methodology, Dr. Grubbs explained, noting that a current weakness is that the framework is set up to compare a randomized clinical trial between two different treatments.  “If I have a treatment where I use drug A versus drug B, and than I have a trial that compares drug B to drug C—how do I compare drug A to drug C?” Work is underway at ASCO to address cross-trial comparisons and also to “anchor the net health benefit score in some meaningful way,” Grubbs shared. Finally, ASCO will continue work with patient advocates and patients to identify endpoints that are meaningful for patients.

On the other hand, NCCN’s Evidence Blocks are operationalized. NCCN’s goal was to create a “flexible value system that could be used to develop each patient’s equation for what is valuable,” said Robert Carlson, MD, CEO, National Comprehensive Cancer Network. NCCN Evidence Blocks are built on five metrics:

  • Effectiveness (efficacy)
  • Safety (adverse events, toxicities)
  • Data quality
  • Data consistency
  • Affordability

The Evidence Blocks are presented in a graphic format so that a user can look for “30 different options in about 4 or 5 seconds and come up with regimens that would be optimal for a specific circumstance,” Dr. Carlson said.

Like ASCO, NCCN intends the Evidence Blocks to support a patient-centered approach to integrating a value discussion into everyday practice. “We look at Evidence Blocks as a conversation starter, not an answer,” Carlson said.  “We don’t tell the patient, because the Evidence Block looks like this, this is what you should do. It’s a question of what’s most important to them.”

Currently, 33 of the NCCN guidelines have Evidence Blocks associated with them. By the end of 2018 all of the NCCN guidelines that have systemic therapies should have Evidence Blocks, according to Carlson. NCCN also intends to expand the Evidence Blocks into other treatment modalities. “We are now starting to look at other modalities, radiation oncology, surgical oncology, and diagnostics . . . in terms of the same sort of scales,” he said.

Rounding out the discussion, panelist Ali McBride, PharmD, MS, BCPS, The University of Arizona Cancer Center added perspective on the cost/value discussion as it may unfold on the frontlines of care. “Many patients may not be able to afford the 20% copay cost for IV therapy, let alone the out of pocket cost for many oral therapies,” he said. “We have to spend a lot of time detailing out those costs for patients, and if they can’t afford it, we have to say, then what’s our next step in that guideline pathway?”

All three panelists noted the need for financial transparency for patients and providers as one component of the value discussion.

In closing, panel moderator Christian Downs, JD, MHA, Executive Director, ACCC, asked panelists to consider what the value framework discussion might look like 10 years down the road.

Acknowledging the difficulty of making any predictions about the future shape of the oncology value discussion, Dr. Carlson envisions technology playing a pivotal role. “My own expectation and hope is that within a decade we will have computer-based systems that patients are able to interact with directly and help define and discover their own value system,” he said. Such a system would enable patients to indicate if they were more concerned with neurotoxicity or cardiotoxicity, for example. Plus the system would also have the capacity to query payers so that patients could know the financial impact of their therapy.

Big data (if the promise is realized) may change the face of value frameworks, noted Dr. Grubbs.  The potential of extensive real-world databases will bring “much more information on what happens to patients outside the narrow clinical trial that has the best, the most robust patients. . . [and extend to] what happens in the real-world. . . . if we had a big data system that had all this information about what happened to everybody and you could really home in on what happens to a 75-year-old person who was not in the clinical trial and have the cost data, you might come up with a very different looking value [framework] from what we’re showing you here today.”

Finally, as value frameworks continue to evolve, community cancer programs and practices have an important role to play, panelists agreed.  “There’s a huge reservoir of expertise and experience in community oncology, and we’d love to tap that, to learn from that. [One of the] ways you can help us, is to continually give us feedback in terms of whether we have it right or wrong. . . . talk to us,” Dr. Carlson said.

Dr. Grubbs concurred, adding that community oncologists are key to making value frameworks functional. “When you see this come out, please make comments back to ASCO on how to make this better, because nobody is going to get this right…right from the beginning.”

CANCERSCAPE Kicks Off with Perspectives on Policy and Business

by Amanda Patton, ACCC Communications

Last week’s events on Capitol Hill provided a dramatic backdrop for the ACCC 43rd Annual Meeting, CANCERSCAPE, March 29-31, bringing together hundreds of oncology professionals from around the country for insights, strategies, and perspective in the midst of healthcare reform ambiguities.

Cancerscape 2017-keynote panelIn a keynote session Thursday morning, policy insiders Kavita Patel, MD, MS, of The Brookings Institution, and Dan Todd, JD, Todd Strategy, LLC, shared insights on possible next steps toward Affordable Care Act (ACA) repeal or repair under the Trump Administration. ACCC Health Policy Director Leah Ralph moderated the point-counterpoint discussion covering what went wrong with the House Republicans’ American Health Care Act (AHCA) legislative effort at ACA repeal, mounting political pressures on Capitol Hill, legislative or administrative options to effect ACA repair, flaws in the design of the faltering individual insurance exchanges and what may (or may not) happen next, and whether the Administration will act on the hot button issue of drug pricing.

Cancerscape 2017 keynote panel 2Asked for one final takeaway that attendees should bring back to their programs to help their colleagues understand the policy landscape, Dr. Patel shared this perspective for frontline clinicians and administrators:

“No matter who is the party in power there’s always going to be this emphasis on cost. I don’t see the pressure to decrease costs going away. It may come in the form of programs like MIPS and commercial programs like ACOs and patient-centered medical homes, but as a physician who is in all of those programs, it’s all about having me [as a physician] understand where I’m over utilizing care . . . . If there’s one takeaway . . . it’s not to sit . . . and wait to see how things shake out.” Start looking for where you have unwarranted variation, where you can start implementing programs that actually matter to patients, Dr. Patel advised. “Take back some introspective ability to look at your variation, look at your costs, look at all the things that fall into P & L for administrators and how do you translate that to where clinical care is delivered.”

Dan Todd left attendees with one final advocacy takeaway: “It’s a new Administration with training wheels still on. . . they’ll ultimately get their balance. . . . If you have priorities, educate your congressional members on [them]. . . your voice is really, really important.”

For more, read OncLive’s coverage of the session here.

Conway-The Advisory BoardThe morning’s second session shifted the focus outside the Beltway to explore emerging cancer care delivery trends and potential impact on the business of providing cancer care. Lindsay Conway, MSEd, of The Advisory Board, briefed attendees on The State of Today’s Cancer Programs, highlighting five key trends shaping the delivery and business cancer care delivery:

  • Healthcare reimbursement and reform is at a pivotal point. Uncertainty continues around the future of the ACA and the insurance exchanges.
  • Increasing numbers of cancer patients with comorbidities requiring enhanced care coordination. From 2000 to 2010, the number of Medicare patients with multiple chronic conditions grew 22%. Proactive steps in care coordination for this population include regular distress screening to identify issues early and devising and implementing care maps for navigators.
  • Telehealth technology bringing care to patients where they are. These technologies and emerging patient-centered tools—ranging from real-time virtual visits, to phone apps, to patient portals, to remote patient monitoring—have tremendous capacity for expanding patient access to care
  • Growth of healthcare consumerism requiring cost and quality information. There are growing online resources for healthcare review, cost and quality information. To address consumerism in cancer care, it’s important for cancer programs to provide information to help patients select the right provider and the right services.
  • Genomic medicine is transforming cancer care. With the rapid pace of change in this area, cancer programs are challenged to invest carefully as they move forward to integrate precision medicine into practice.

More coverage on this session is available here.  To learn more about the ACCC 43rd Annual Meeting, CANCERSCAPE,  visit us at accc-cancer.org.