Navigation Caseload Quandary?

Learn about 2017 ACCC Innovator Award winner USA Mitchell Cancer Institute’s homegrown Oncology Navigation Acuity Tool.

By Rev. Diane Baldwin, RN, OCN, CBCN, and Meredith Jones, MS, BSN, RN

FinalSealUnfortunately, nurse navigation services are typically non-revenue generating, necessitating a cost/benefit evaluation of these services for many programs. To justify nurse navigation in this new era of value-based care, we must define appropriate caseload volumes through risk stratification, and determine how best to allocate nurse navigation time and resources among those caseloads.

How Best to Measure & Define Acuity?
Acuity tools have been used in healthcare for decades and have proven successful as a means of determining staffing needs, improving patient care, and controlling costs.  Most acuity tools score patients on a scale of specific attributes. For nurse navigation programs, an acuity tool can be used to determine caseloads and aid in more efficient nurse navigator caseload management.

At USA Mitchell Cancer Institute, our nurse navigators, known as Clinical Care Coordinators, maintain a caseload of approximately 175 patients. However, as we identified more patients needing navigation services, we recognized the need for an acuity tool specifically for caseload management.

As we researched acuity tools, we found limited options related to oncology nurse navigation. Each of the tools we identified was specific to a facility, and was either used to determine overall staffing or focused specifically on the amount of time spent with patients.  We believed that a more generalized tool, including more patient factors, was needed to accurately determine patient acuity. Therefore, the USA Mitchell Cancer Institute began developing an Oncology Navigation Acuity Tool, universally designed to benefit our practice, while also allowing for use and adaptation by other cancer programs.

More Than Just a Number
USA Mitchell Cancer Institute’s goal was to develop a tool that measures a patient’s acuity through a holistic lens. As cancer care providers know, each patient’s navigation needs depend on a variety of factors. Our Oncology Navigation Acuity Tool considers 11 factors that we identified as directly correlating with patient resource utilization and, therefore, acuity level.  Each factor is reviewed individually to determine the acuity score, placing less emphasis on cancer type and stage, and more emphasis on overall patient context. For example, two patients with the same type and stage of cancer, receiving the same treatment, may present with different comorbidities and levels of family support, resulting in two very different acuity scores.

An inherit weakness in most acuity tools is that the “score” assigned to the patient determines overall acuity. However, we know that our patients are more than just a number.  Standardized tools often fail to identify important elements needed to address individual patient needs. Therefore, our Oncology Navigation Acuity Tool includes a 12th factor in determining a patient’s acuity: The clinical assessment of the nurse navigator.  This factor is essential to assessing the “whole patient” and our aim of providing holistic care.  Our nurse navigators use the 11 factors of Oncology Navigation Acuity Tool as a guide to assess the acuity of the patient and combine this with their overall clinical assessment, for a final acuity score.  Ultimately, our nurse navigators, may elect to change the acuity level based on their assessment of the individual patient.

Putting the Tool to Work
The Oncology Navigation Acuity Tool allows us to easily assess the needs of each navigated patient prior to caseload allocation and to quickly determine the level of navigation the patient will need. The tool has also guided managerial decisions to adjust caseloads based on acuity rather than patient count alone.  Further, we’ve utilized this tool for both quality and process improvement to study the varied needs of patients among the acuity levels, and to determine the effect of accurately navigated patients on system utilization and cost.

In our presentation at the ACCC 34th National Oncology Conference, October 18-20, in Nashville, TN, we’ll share more on how using this low-cost, simple to implement tool has resulted not only in a cost-effective, efficient means of refining navigation utilization, but also in the delivery of more personalized, comprehensive, improved quality of care for our navigated patients.

We look forward to seeing you in Nashville!


Rev. Diane Baldwin, RN, OCN, CBCN, is Manager, Quality Assurance, and Meredith Jones, MS, BSN, RN, is Director, Quality Management, at the USA Mitchell Cancer Institute.  

From ASCO to ICLIO to Your Program—Immunotherapy Moves into the Community

By Amanda Patton, ACCC Communications

Once again immuno-oncology (I-O) was center stage at this year’s American Society of Clinical Oncology (ASCO) Annual Meeting (June 2-6, 2017) where more than 250 presentations featured checkpoint inhibitors. Currently, six immune checkpoint inhibitors have received FDA approval for more than nine cancers, with more than 1,000 studies in progress.

On June 2 at ASCO, two pre-eminent immunotherapy investigators provided perspective on the rapidly evolving immuno-oncology landscape with a look back and a look to the future.  During their presentation, “On the Shoulders of Giants: Historical Approaches to Immunotherapy in Solid Tumors,” James P. Allison, PhD, of The University of Texas MD Anderson Cancer Center, and Suzanne L. Topalian, MD, of the Bloomberg-Kimmel Institute for Cancer Immunotherapy, touched on some of the critical challenges the oncology community faces with these new and emerging therapies, including:

  • How to deal with the flood of information from clinical studies
  • The need to better understand the biologic processes underpinning of side effects of these new therapies
  • The imperative to identify biomarkers.

Read highlights from their presentation in this ASCO Daily News article.

ICLIO’s Evolving Role—Supporting Integration of I-O into Practice
Just as insights from ASCO 2017 will continue to ripple throughout the broader cancer community for weeks and months to come; the wave of new approvals and indications in immuno-oncology will continue to spread from academic settings into community programs and practices, where it is estimated that 85% of the nation’s cancer care is delivered.

Since its inception more than two years ago, the ongoing mission of ACCC’s Institute for Clinical Immuno-Oncology (ICLIO) is to create education, resources, and tools that provide practical, real-world support for multidisciplinary team members engaged in bringing immunotherapy to patients in their communities. Hear about ICLIO’s growth and latest initiatives in this ASCO Post interview with ICLIO Advisory Committee Chair Lee Schwartzberg, MD, FACP, Chief, Division of Hematology Oncology; Professor of Medicine, The University of Tennessee; The West Clinic, PC.

ICLIO In the Community
In 2017, ICLIO launched two exciting new programs—ICLIO Visiting Experts and Case Studies in Immuno-Oncology—that bring clinicians with immunotherapy expertise out to providers in the community.

“It’s an area that ICLIO is spearheading,” said ICLIO Visiting Expert Jarushka Naidoo, MBBCh, Assistant Professor of Oncology at Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University and Bloomberg-Kimmel Institute for Cancer Immunotherapy.  With the ICLIO Visiting Experts program, “Investigators such as myself who are particularly interested in immunotherapy can actually go to community providers and give our hands-on experience of how we give these agents, what are the common side effects that we see, and what are some of the ways we’ve gotten around some of those particular considerations. We’re able to interact with the workshop participants one-on-one and talk about specific cases they’ve managed, some challenges they’ve had, and how we might have dealt with that from an academic perspective.”

Learn more in this Hem/Onc Today interview with Dr. Naidoo:

For the just-launched Case Studies in Immuno-Oncology, an ICLIO faculty member will travel to an ACCC-member program for a 60-minute case-based tumor board discussion on immunotherapy treatment decision-making and the management of associated immune-related adverse events. Learn more and apply.

Stay Tuned
Take advantage of the upcoming June 27 ICLIO webinar featuring post ASCO 2017 immuno-oncology highlights presented by ICLIO Advisory Committee Chair, Lee Schwartzberg, MD, FACP. Register today.

View all ICLIO has to offer by visiting accc-iclio.org.

Desperately Seeking Oncology Nurses?

Stressed by nurse staffing shortages? Learn how 2017 ACCC Innovator Award winner Loma Linda University Cancer Center tackled this challenge.

By Lexine Thall, MN, RN-BC, AOCN, and Kristina Chase, BSN, RN, OCN

FinalSeal

One of the most challenging issues in healthcare is the ongoing balancing act of staffing and retention. For specialty areas, such as oncology, staffing presents an even more difficult challenge. Finding those perfectly qualified individuals with all the right experience to fill open positions can be a taxing, time-consuming task. As a result, cancer programs may find themselves dealing with lengthy vacancies, which can cause some real strains on a growing clinic and may led to an unhappy environment for nurses and patients. When our cancer program encountered this understaffing dilemma, chemotherapy skilled and oncology experienced (CS-OE) RNs in our cancer center began facing increased workloads, which put them at risk for potential burn out, being vulnerable to making errors, and causing longer wait times for patients.

Our cancer program leadership team had to think outside of the box and create a road map to alleviate some of these staffing strains. An analysis of appointment types and RN skill level needed for each visit type revealed that 40 percent of our supportive care therapies (e.g., hydration, blood transfusions) did not require a CS-OE RN. Given this information, we decided to pilot a program that would fill RN vacancies with experienced non-oncology nurses and create a pathway for these RNs to attain the ONS Chemotherapy/ONCC Chemotherapy Biotherapy Certificate. Our aim was to provide a mentorship program in conjunction with vetted education tools to develop these RNs professionally and alleviate our staffing crisis. The pilot program launched in 2014, and to date, 17 nurses have been accepted into the mentoring program. All RNs who opted to pursue the ONS/ONCC Chemotherapy Biotherapy Certificate (7 of 7) have attained their goal and 86 percent (6 of 7) of the RNs who attained this certification have remained with our organization.

Our mentorship program has drastically decreased the length of time we have unfilled RN positions posted—from an average of 113 days down to 29 days. It has also given many nurses an opportunity to gain focused experience in a specialty area for which many employers may not be willing to bear the educational costs. In addition to the benefit for the non-oncology nurse, the program has provided professional satisfaction and role expansion for the CS-OE RN mentors. A win-win for all parties involved.

At the ACCC 34th National Oncology Conference, October 18-20, 2017, in Nashville, TN, we’ll be sharing the details of our mentorship journey, “how to’s” for developing a program like ours, and some lessons we’ve learned along the way.  I hope you can join us in Nashville!

Hear more from all the 2017 ACCC Innovator Award winners at the ACCC 34th National Oncology Conference, Oct. 18-20, 2017, in Nashville, TN. Learn more.


Lexine Thall, MN, RN-BC, AOCN, is Director, Patient Care, Loma Linda University Cancer Center; Medical Oncology/Hematology; Women’s Cancer/Surgical Oncology; and Kristina Chase, BSN, RN, OCN, is Patient Care Supervisor.

The Journey to EHR Optimization

Second in a two-part series from ACCC’s Optimizing Electronic Health Records project. Read part one.

By Joseph Kim, MD, MPH, MBA

While the vast majority of oncology clinicians use an Electronic Health Record (EHR) today, many continue to struggle with poor usability and increased workloads. Recognizing the needs in the community, the ACCC Optimizing Electronic Health Records (EHRs) education initiative aims to identify practical solutions and effective practices to help cancer programs navigate their ongoing journey with EHRs.

ACCC convened two focus groups for this project bringing together a diverse group of stakeholders to talk frankly about how their cancer programs are overcoming some of the common EHR challenges that hinder provider efficacy.  Four key themes emerged during these conversations, read on.

Coordination of EHRs Across Multiple Locations
Given that some cancer programs span multiple locations that offer different services, it remains critical for all the sites to share patient information effectively. However, even when the sites are all using the same EHR, flawless interoperability is not guaranteed since some hospitals may be running different versions of the same system.  As a result, clinicians who work at multiple locations may need to get accustomed to different screen layouts when they log in, or they may have access to different functionalities based on the customizations that exist at each local site. Moreover, the use of certain add-on modules (e.g., Epic Beacon module for medical oncology) may not be consistent across the health system. Ample opportunities remain to standardize the digital workflow across health systems so that clinicians can work more efficiently.

Another common barrier in the community is the lack of interoperability across the systems used by medical oncology, radiation oncology, pathology, radiology, and the hospital. While some health systems are consolidating to a single EHR system across all those departments and services, many still run into challenges with read-only access versus the need to log in to different computers to access patient records. While establishing local interoperability within the same health system remains an ongoing journey, some regions are also actively leveraging solutions offered by the Carequality Interoperability Framework or the CommonWell Health Alliance to achieve interoperability more rapidly.

Data and Reporting
When clinicians switch to a new EHR system, data migration is one of the biggest time-consuming tasks because of the complexity of mapping all the structured data fields from one system to the next. Cancer programs with access to a dedicated informatics specialist can make customizations and run reports with greater ease. Since oncology is changing at a faster pace than any other medical specialty, cancer programs with access to the necessary IT resources are having an easier time offering new therapies and monitoring patients effectively.

While the cancer registry is usually its own separate system, registrars may provide valuable feedback about data fields and automated reports. Cancer programs participating in programs like the ASCO Quality Oncology Practice Initiative (QOPI) or the CMS Oncology Care Model (OCM) have made considerable investments to generate ongoing reports from their EHRs, so other cancer programs may learn from those experiences and adopt similar approaches within their own institutions.

Building Order Sets
By now, most cancer programs have an established process for creating new electronic order sets and treatment plans for new drugs and therapies. They may have a core multidisciplinary team that meets to create and test new treatment protocols. An oncology pharmacist is an essential member of that team, providing guidance around drug dosing and safety alert parameters. Nurses can also provide important input regarding clinical documentation around safety monitoring. Since order sets for oral oncolytic agents need to be linked between the medical oncology EHR and the pharmacy systems, it remains critical to map how orders are transmitted to different specialty pharmacies that dispense those medications. In some cases where those systems are not integrated, redundant workarounds may be required for the e-prescribing of oral agents.

Superusers
Superusers may either be formally designated or informally recognized as tech-savvy clinicians who are willing to play a greater role to help their colleagues and peers use EHRs more effectively. In some cases, superusers may carry over from a recent implementation of a new system. It’s important for cancer programs to maintain and foster a group of superusers who can lead the development of new order sets, help to train new users, and provide input on new releases or customizations to the system. Some cancer programs invest in their superusers by sending them to annual corporate training events so that they can also learn how other health systems are tackling common problems and issues. Be sure to give recognition to the superusers because some may take on more formal roles such as Director of Informatics or Medical information Officer.

Look for more insights from the ACCC Optimizing Electronic Health Records initiative in the coming months.


Guest blogger Joseph Kim, MD, MPH, MBA, is serving as a consultant for the ACCC Optimizing Electronic Health Records (EHRs) initiative.  Dr. Kim is President of Xaf Solutions.

Challenges to EHR Optimization for Cancer Programs—Workload, Cost, and Interoperability

By Joseph Kim, MD, MPH, MBA

While electronic health records (EHRs) remain a necessary component of care delivery, in a recent survey of ACCC Cancer Program members, 62% of respondents report that EHRs have increased the workload of their staff and 51% indicate that their EHR system has increased their total operating costs. Only 34% of respondents said that both medical and radiation oncology practices can interface with the hospital system. And about one-quarter (27%) report that neither medical nor radiation oncology practices can interface with the hospital system.

The survey was conducted for the ACCC Optimizing Electronic Health Records (EHRs) education initiative, which aims to help cancer programs identify ways to optimize their EHRs to meet the growing demands for accurate, integrated, comprehensive data capture and analysis.

ACCC conducted the survey (n=98) in early 2017 to assess members’ experience with their EHRs; 70% of respondents represented community cancer programs, 17% were from academic programs or NCI-designated cancer centers, and 11% were from outpatient oncology practices.

Among survey respondents the most common EHR systems in use were Epic and Cerner.

  • 47% have been using their current EHR system for more than 5 years.
  • 26% are actively switching to a different EHR system (either to Epic or Cerner).
  • The most common reasons for switching:
    ♦ To standardize EHR use across the entire health system
    ♦ To Increase data extraction and reporting capabilities.

While some EHR systems come with optional packages and add-on modules, others require their users to install third-party software.  According to survey responses, the most common add-on software packages are currently being used for:

  • Billing and coding
  • Survivorship care plans
  • Patient engagement and communication via patient portals.

In the current landscape, interoperability even within the same system remains a significant challenge. Specifically:

  • Only 34% of respondents indicate that both medical and radiation oncology practices can interface with the hospital system.
    ♦ 22% indicate that only medical oncology interfaces with the hospital system.
    ♦ 9% indicate that only radiation oncology interfaces with the hospital system.
  • 27% report that neither medical nor radiation oncology practices can interface with the hospital system.

The survey also asked respondents to rate different usability factors. Those receiving the highest ratings (i.e., most usable) were:

  • Entering patient information
  • Searching for medical information about a patient
  • Interfacing with the patient portal

The usability factors with the lowest ratings (i.e., least usable) were:

  • Ability to incorporate third party add-on modules
  • Customer service provided by EHR vendor
  • Making customizations within the EHR

Cancer programs rely heavily on their designated superusers, who often train new users, to provide recommendations or test new releases. Responses in several survey areas indicate that the increased use of scribes (also called clinical documentation specialists) may be a growing trend, especially for certain providers who may benefit substantially in their ability to see more patients.

Through this project, ACCC will be identifying real-world examples of how community cancer programs are optimizing their use of EHRs. Stay tuned for more project updates here.

Coming next, see what a focus group of ACCC members reveals about real-world challenges to EHR optimization.


Guest blogger Joseph Kim, MD, MPH, MBA, is serving as a consultant for the ACCC Optimizing Electronic Health Records (EHRs) initiative.  Dr. Kim is President of Xaf Solutions.

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.

Going the Distance: What We Heard at the OCM Workshop

By Leah Ralph, DIrector of Health Policy, ACCC

ACCC-OCM-CollaborativeWe are now 10 months into the groundbreaking Center for Medicare and Medicaid Innovation (CMMI) Oncology Care Model (OCM). Just a few weeks ago during the ACCC 43rd Annual Meeting, a number of OCM practices came together to share updates, pain points and successes, and to collaborate on innovative approaches to meeting OCM requirements during ACCC’s OCM Workshop.

Shaping Up
Participation in the OCM has been likened to “training for a marathon,” requiring cancer programs to do an honest self-assessment of their financial and operational capabilities, and double down on their investment in workflows, staffing, and data collection—all while trying to reduce costs and meet a number of beneficiary-level reporting requirements. EHRs (electronic health records) play a critical role in these efforts, and practices are finding that much of the quality and clinical data CMS is asking for is not readily accessible, requiring time-consuming chart abstraction and manual reporting. In addition to data analytics, other major challenges include:

  • increased staffing needs,
  • investment in IT systems, and
  • clinician education and engagement.

Some practices have hired full-time patient care coordinators—similar to research coordinators for clinical trials—to manage OCM requirements, including identifying and tracking patients, coordinating episodes and required measures, and billing the Monthly Enhanced Oncology Services (MEOS) payments.

While there is agreement that the OCM’s policy goals—improving care quality and reducing costs—are the right ones, operationalizing the program has proven to be far more complex than originally anticipated. Even by CMS. And, like all major payment reform initiatives, course corrections will be needed along the way.

Some Pain, Some Gain
Despite challenges, ACCC OCM Workshop participants are also finding that the OCM’s  “practice transformation” requirements are strengthening their programs. Many have taken a “good, hard look” at palliative care and pain documentation, care coordination, and end-of-life conversations. Others have implemented social work and dietitian services that they were not previously able to make available to patients. While many cancer programs were engaged in these activities in some form before the OCM, participation in CMMI’s demonstration program has made these components robust and consistent, improving patient care. One practice called it an “awesome byproduct” of the program.

Another byproduct? Practices are also finding that the OCM is creating an imperative for the C-suite to make certain investments and providing leverage with EHR vendors; requests that were previously considered optimization items are now considered “must haves” to meet OCM requirements.

Dealing with Data
Last month OCM practices faced their first big data reporting deadline and they also received their first feedback reports following the first episode of care, breaking out cost per episode and comparing performance to other OCM practices. These data came in a format that was not easy to interpret, and required several practices to outsource the data analysis and interpretation. With the feedback reports practices are seeing their spending on OCM patients, and getting a sense of how they may fare with performance-based payments down the road, but practices won’t see reconciliations against target prices until early 2018.

Watchful Waiting
Where OCM practices succeed and struggle carry important implications for all cancer programs and the transition to value-based care. As one practice put it, the OCM is “the pebble in the pond for us.” We should all be watching the ripples closely. And taking notes.

To learn more about the ACCC OCM Collaborative, visit  accc-cancer.org/OCM. All OCM participating programs are invited to join our online community at ocmcollaborative.org to hear what else your colleagues are saying.