MaineGeneral 11 CELEBRATING YEARS OF HOPE · 2019-04-23 · 3 Message to Our Community We celebrate...

Heal

Be strong

Inspire

Hop

e

Care

Grow

Dignify

Love

Honor

MaineGeneral Cancer Care2018 Annual Report

C E L E B R A T I N G

OF HOPEYEARS11

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Cancer Care CommitteeMarissa BarnettCancer Registrar

Monica BeaulieuQuality Improvement Coordinator Administrative Director, Quality Care Management & Safety

Juanita Begin, RNRadiation Oncology Navigator

Cathy Bourque, PTRehabilitation Manager, Rehabilitation Services

Debbie Bowden, RN, MSNCancer Program Administrator Administrative Director, Oncology Services

Anne Connors, MA, MPHProject Manager, Maine Lung Cancer Coalition

Robert Dohner, MDMedical Director, Palliative Care

Rev. Joe DresslerSpiritual Care, Patient & Family Advisory Council Representative

Chesley Flotten, LCSWPsychosocial Coordinator, Social Services

Paul Gagliardi, MD, FACRRadiologist, Diagnostic Radiology

Carolyn HallCancer Registrar

Glenn A. Healey, MDCancer Conference Coordinator, Cancer Committee Chair Medical Director, Radiation Oncology

Nicole HeansslerAmerican Cancer Society Liaison

Byung Kim, MDMedical Oncologist

Dawn King, RNNurse Manager, Inpatient Oncology

Shannon Leighton, CTRQuality of Cancer Registry Coordinator

Joseph Lopes, MDUrologist

Laura Nelsen, MDPathologist

Sandra Neptune, RNClinical Research Nurse

Anita Praba-Egge, MD Cancer Liaison Physician, General Surgeon

Terri Priest, RNOncology Clinician

Erika RodrigueCancer Registrar

Kim Smith, RN, MSNNurse Manager, Medical Oncology Services

Paul SteinSenior Vice President, Oncology Services, Chief Operating Officer

Donna Walsh, MS, RD, CSO, LDCommunity Outreach Coordinator

Jayne WeinbergCancer Registrar

Barbara Wiggin, MBA, CNMT, CBDTManager, Radiation Oncology

ContentsMessage to Our Community �� 3

Quality Access and Patient Experience �� 4

Advanced Cancer Care Through Partnerships ��6

Superior Workforce �� 9

Community Outreach ��10

Cancer Program Standards: Ensuring Patient-Centered Care ��13

MaineGeneral Cancer Registry Report ��18

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Message to Our CommunityWe celebrate our eleventh year of service at the Harold Alfond Center for Cancer Care� While we continue to provide outstanding care, we have never been better positioned to deliver on our commitment to delivering the highest quality care right here, close to home, family and loved ones�

“Our success can be found in the wonderful teams, programs, treatments and technologies that make up the Harold Alfond Center for Cancer Care. The people and stories featured in this report attest to those successes and I encourage you to read on. There is a wealth of information contained within that will be both informative and inspiring.”

– Glenn A. Healey, MD

“My physical needs as well as my emotional needs are always taken seriously. I feel cared for and respected whenever I am there and by whomever I deal with.”

“Everyone that I encountered demonstrated patience and kindness to me and my family. They made a very difficult situation understandable.”

“Receiving a cancer diagnosis took my breath away until I met the cancer center staff who have given me hope and have surrounded me with love and support.”

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Providing quality care and a great patient experience are the foundation of our cancer care program� Our staff and volunteers work with our patients and their families to offer the best patient experiences and listen closely to needs they express, seeing them as areas of opportunity� Our team has worked hard to make positive changes in several areas that ultimately impact patients and their families at some point during their cancer care journey�

Open Access Clinic – A Proactive ApproachAt the Harold Alfond Center for Cancer Care (HACCC), timely and prompt access to care is a high priority� We pride ourselves on our ability to schedule new patients shortly after their diagnosis and to schedule appropriate, timely follow-up visits� In addition to scheduled appointments, oncology patients often have unpredictable oncology needs that necessitate a medical visit between appointments� This may include patients whose nausea or pain are not well controlled or patients who cannot drink enough fluids and may need IV fluids�

To meet this important patient need, the HACCC established the Open Access Clinic (OAC) several years ago� Since opening the OAC, many patients have received more timely care, and there have been fewer Emergency Department visits and hospitalizations� Patients and families have voiced their appreciation for being seen by the team that knows their specific needs related to their cancer care when unexpected issues arise�

This past year, the HACCC revisited this initiative to review opportunities for enhancing the service� A small task force, spearheaded by one of our Advanced Practice Providers (APP), presented a recommendation for a more collaborative model, which included a proactive versus reactive response to meeting patients’ needs and improving outcomes� Our highly trained oncology certified nurses assess each patient’s anticipated needs via a phone call to the patient’s home� Patients and families who are often unsure when to seek more help are grateful for these calls� If the need warrants additional evaluation, we encourage the patient to come to the OAC for services to avoid progression of symptoms� Recognizing the value of this proactive approach, we have set a goal to increase access to care for these unexpected needs by 100 percent based on the previous fiscal year visits�

The OAC is currently staffed with an APP and an oncology nurse, with access to a myriad of supportive services including lab, pharmacy, imaging, social workers and other oncology specialists� Our specially trained and knowledgeable staff provides comprehensive clinical assessment and administers appropriate treatment modalities� The OAC is targeted at non-emergent conditions to help with timely patient interventions, continuity of care and improved quality of life�

Can You Hear Me Now?“Why can’t I ever reach a live person when I call the cancer center?” These words reflected the feedback received from multiple internal and external customers related to phone access to medical oncology� The staff was also frustrated to hear this response from patients as they strove to provide excellent customer service�

A deeper dive into the phone statistics found that only 49 percent of the calls were being answered by a live person, adversely affecting patient experience� To address this issue, a task force was convened to focus on incoming calls to medical oncology� The task force used several tools and resources for data collection, along with process mapping to obtain

Quality Access and Patient Experience

Our staff listen closely to patients’ needs�

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measurements� The voice of the customer was also taken into consideration using patient interviews as well as input from our patient family council�

Baseline data from a system report supported our initial impression about the number of incoming calls� However, instead of 49 percent being answered by a live person, it was actually less than 40 percent� One month’s data revealed that out of the 4,625 calls made to medical oncology, 900 were dropped calls and 1,904 went to voicemail�

Often, staff were unable to answer calls personally as they were assisting other patients in the clinic or attending to other work tasks� The staff was returning patient calls, but they were triaging calls� They were returning the more medically urgent calls first and then, when time allowed, returning other calls about scheduling, etc�

The task force reviewed the barriers that were identified during the mapping of the current process and the desired outcome� They wanted to find a solution that used existing staff and did not increase costs� They brainstormed solutions and worked intensely with staff from telecommunications and information technology to come up with a plan�

On October 29, 2018, using existing staff, a phone pilot was launched� The pilot included using a designated live person to answer the incoming calls and using a new function called tasking in the electronic medical record� The functionality of tasking allowed the new “operator” to communicate the caller’s request to the right service, at the right time, with the details needed for a timely response�

Within a very short time, we started hearing unsolicited positive responses internally and externally� Patients and other external callers often started their conversation with, “I can’t believe I’ve reached a live person!” Staff also voiced their delight as their workload became more manageable, allowing them to achieve their goals more readily

and giving them a sense of satisfaction and accomplishment� More importantly, patient needs were being met and questions were being answered� It was a positive experience for everyone�

With two months of positive results and minor revisions made to the initial plan, this initiative will continue� We will review the data quarterly and enhance the new telephone answering procedure as appropriate�

Financial Counselors Reduce the Stress of Cancer CareReceiving a cancer diagnosis brings physical and emotional stress, not the least of which is stress about finances� The questions begin: ”How much will this cost?” “Will my insurance cover the treatment I need? “What do I do if I don’t have insurance?” To help deal with this financial stress, we have enhanced our financial counseling services and now provide two full-time counselors on site to meet this need�

Linda, also known as “Red” and Suzanne assist patients with this part of their cancer journey by helping them understand the costs of cancer, including how their specific insurance will cover costs and what to expect to pay in copayments and deductibles� Our financial counselors can also help patients with the complex application process for MaineCare as well as other financial assistance programs when needed�

Over the past year, many patients have benefited by the services of our financial counselors� More than 200 patients have been enrolled in financial assistance programs and more than 100 have received assistance with food, transportation costs and medical bills through the Alfond Endowment Fund�

Walk for Hope Oct� 2018

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Cancer care partnerships are critical as combined resources can enhance the quality, quantity and desired outcomes we strive for with every patient� Our patients can benefit in multiple ways from the services our partnerships provide�

BioBanking at the Harold Alfond Center for Care (HACCC)What is a BioBank? A biobank is a type of biorepository that stores biological samples for use in research� Biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalized medicine�

Patients diagnosed with cancer at the HACCC are invited to donate blood, bone marrow and tissue left over from a surgical procedure to be used in future cancer research� Scientists use these donated specimens to learn more about cancer and help develop better cancer treatments� The BioBank stores these specimens and also supplies them to a number of collaborators, including Maine Medical Center Research Institute, Maine Medical Center BioBank, Discovery Life Sciences, BioIVT and Conversant Bio�

Many patients are excited to hear of this opportunity, often saying it is a way to “give back” and hopefully help others in need� In the past year, 347 patients have consented and 336 specimens have been collected� This is more than four times the number of specimens collected in 2017�

The Jackson LaboratoryWith continuous support from The Harold Alfond® Foundation, The Jackson Laboratory’s Maine Cancer Genomics Initiative (MCGI) team has created a medical oncologists’ network covering the state of Maine — the first of its kind in the country� This network enjoys 90 percent statewide oncologist participation and is governed by a Clinical Steering Committee represented by members from all of Maine’s cancer practices�

The goal of the MCGI is to enable precision cancer testing across the entire state, connecting regional care centers with urban clinical trials for the best patient outcomes� The Harold Alfond® Foundation is providing support for this initiative over three years, in the form of a generous gift that will help cover the costs of genomic testing for 1,800 patients� This initiative fills the gap between innovation and implementation, providing education to clinicians and patients and, most importantly, making genomic testing accessible so it can be adopted as a regular practice for Maine patients with cancers of varying complexity�

In 2018, the MCGI has made significant progress on many important metrics and milestones� To date, more than 550 patients have been enrolled and the test results of a quarter of them have been reviewed at statewide run Genomic Tumor Boards under the guidance of an external panel of clinical oncology genomics experts from seven top national cancer centers� As a result, many of those patients have already been referred to clinical trials or secured drug access� Based on enormous advances in precision oncology for pediatric cancer patients and interest among the Maine pediatric oncologists, The Jackson Laboratory has begun broadening the MCGI to include pediatric cancer patients and their physicians�

With the feedback from Maine oncologists, The Jackson Laboratory has already developed several topic-specific educational materials for MCGI providers, staff and other interested parties� These iteratively created education modules are designed to address the clinical challenges regarding implementation of genomic tumor testing� A newly launched statewide MCGI communications campaign,

Advanced Cancer Care Through Partnerships

Lory Guerrette

Erica Jackson

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funded by JAX philanthropy, is also helping spread the word about our initiative throughout the state�

The Jackson Laboratory MCGI Team would like to express its gratitude to the Harold Alfond Center for Cancer Care for its hospitality, continuous support and partnership with the implementation of genomic medicine in the state�

MaineHealth Cancer Care Network UpdateMaineGeneral Medical Center continues to benefit from its partnership in the MaineHealth Cancer Care Network, generously supported by the Harold Alfond® Foundation�

We’re seeing more patients at the Harold Alfond Center for Cancer Care in part because of this partnership� In the past year, we’ve served 12 percent more patients� Referrals to the cancer center from MaineHealth sites increased 56 percent in the same year�

Additionally, critical support has flowed to MaineGeneral from the network which has enabled us to enhance services we offer patients�

Funding has helped us establish a Mohs Micrographic Surgery specialty at MaineGeneral� Mohs surgery is the most advanced, precise and effective treatment for skin cancer, offering the highest cure rates while preserving healthy tissue� We’re the only provider of this service in the Kennebec Valley, which is offered through MDFMR Dermatology Services in Augusta�

Grant support from the network has also enabled us to provide genetic counseling services, patient navigation and enhanced social work services to patients�

Finally the partnership is enabling the HACCC to improve its lung cancer surveillance software as well as additional enhancements to our electronic medical record�

Expanding the Role of the NavigatorOncology nurse navigators were introduced to the Harold Alfond Center for Cancer Care over five years ago with a model that provided patients with a point-of-entry navigator (POEN) to start their process� Then they were gently handed off to a clinical navigator who would walk with the patient and family through the treatment/care journey� In 2015, a new navigation model was introduced� Having limited resources, the program was initially set up to pair a clinical navigator with each oncologist and to add two POENs to focus on patients diagnosed with head and neck, lung and gastrointestinal cancer� These additional POENs supported the ongoing efforts of two breast coordinators who were established in the area of women’s health more than 13 years ago�

Over the last two years, the benefits and outcomes associated with navigation have proven themselves over and over� The role has now become more defined, placing an emphasis on guiding the patient to obtain the right care, at the right time, and to receive care closest to home as appropriate� The navigation of patients through the health care system includes, but is not limited to, helping patients and their caregivers make informed decisions, collaborating with a multidisciplinary team to allow for timely cancer screening, diagnosis and treatment, as well as assessing for barriers to care and supportive measures�

Thus, we were grateful to the Alfond Foundation when a grant, in collaboration with the MaineHealth Cancer Care Network initiative, provided the HACCC funds to support another POEN� In the fall of 2017, based on our community needs assessment, a genitourinary (GU) POEN was added to complement the current team described above� Andrea Martelle, celebrating 25 years as an RN at MaineGeneral, assumed this role� Andrea is an oncology certified nurse (OCN) and has also obtained her national nurse navigation certification (ONN-CG)�

Like our other POENs, Andrea works collaboratively with specialty and primary care offices to facilitate testing, based on National Comprehensive Care Network (NCCN) guidelines, as well as timely, quality

Andrea MartelleWalk for Hope Oct� 2018

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referrals to appropriate specialists� As the GU program was new as of December 2017 procedures, forms and relationships had to be built� Over the last year, Andrea has collaborated with primary care offices, the urology health care team as well as radiation and medical oncologists to assess, plan, facilitate, track and monitor patients with prostate, bladder, kidney and testicular cancer� More than 235 GU patients have benefited from a nurse navigator early in their diagnosis� Physicians have reported positive movement with the care provided by navigators, sharing comments such as, “navigation has streamlined patient care and helped eliminate barriers�”

In the process of developing the GU program, Andrea discovered an opportunity to collaborate with the prostate cancer support group, led by survivor Nelson Leavitt� These meetings are held monthly at the HACCC providing survivors and their partners education and resources, as well as latest screening and treatment information� A benefit of this newfound partnership is more men and their partners are joining the meetings for support and education� In fact, the support group is looking at expanding and setting up meetings in the Farmington and Rockport areas�

Survivor-driven support groups offer patients and their partners the forum to share challenges and learn from the experience of others with the support of various members of the health care team� One man expressed his gratitude to the support group by sharing a recent experience�

How long will I do cancer support work?

On Wednesday morning, after I had worked late the night before updating information from the cancer support group meeting, my wife asked “After 17 years, how much longer do you think you will do this?”

My answer was, “As long as a man and his partner in the journey with prostate cancer need to learn they are not alone. Let me tell you about last night…”

I went on, “I talked with Fred after the small group discussion. Fred is 76 and has started hormone therapy for advanced cancer. He is a veteran who was awarded the Purple Heart for wounds he received in Vietnam.”

He told me, “I was blindsided by the diagnosis of cancer and felt as though I was completely alone with no one to talk with about it. But what got me here tonight was my visit with the psychiatrist yesterday.”

I said, “What do you mean by that?“

He said, “He told me he thought I was getting ready to check out and that I better make final plans…”

“REALLY?” I said. “Why would he say that?”

Fred said, “He told me unless I improve my attitude and find hope, I would not last long.”

Then he added, “I FOUND IT HERE TONIGHT!” His wife nodded in agreement.

He had a tear in his eye, and so did I.

“So, Rosemary Leavitt, I am in this for the long haul.”

From logistics, to education, to counseling, to shared decision making and transition to survivorship and post-treatment care, the nurse navigator role has evolved from a mere amenity to a crucial component of cancer care, continuously assisting patients, families, health care providers and our community at large across the care continuum�


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Superior WorkforceDedication, compassion and state-of-the-art care are what our superior workforce contributes to the patient experience at the Harold Alfond Center for Cancer Care� Our radiation and medical oncology teams include board-certified oncologists who determine the appropriate treatment plan, unique for each patient� Our amazing advanced practice providers partner with our oncologists to support and assist in executing the plan of care�

Meet Our Oncology Provider TeamRadiation Oncology

Medical Oncology

Ginna E� Dix, AGNP Jessica L� Douin, NP Ridhi Gupta, MD Byung Kim, MD

Glenn A� Healey, MD Dung B� Nguyen, MD, PhD

Rachit Kumar MD, MBBS Amanda M� McGarr, FNP G� Richard Polkinghorn, MD Jillian Savage, NP

Elizabeth Teague, PA-C Susan Trafton, PA-C

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Community OutreachWe love our community because you are our friends, family and neighbors� Thus, we focus on identifying needs and improving our community’s understanding of the importance of early detection and prevention of cancer, as well as new developments in care, diagnosis and treatment� We love our opportunities to bring our health care team and community together to enhance and celebrate life� We are with you�

PreventionOne pillar of cancer prevention is community outreach� The Harold Alfond Center for Cancer Care has partnered with MaineGeneral Medical Center’s Prevention & Healthy Living Department on a lung cancer prevention project that uses the skills of community health workers (CHWs) to reach out to people at risk for lung cancer�

In 2018, CHWs Mark Bourassa, Brianne Karstens and Trisha Ware worked with Four Seasons Family Practice, Gardiner Family Medicine, Oakland Family Medicine and Winthrop Family Medicine to reach the population most at risk for lung cancer: those 55-80 who are current or former smokers� In addition to working with the primary care practices, the CHWs also conducted outreach to community members in high-risk areas�

Meeting people where they are at and building a relationship with them is key to engaging them in lung cancer risk reduction� It’s said that pictures speak louder than words and sometimes stories speak louder than statistics� In this annual report, we would like to share a story with you that illustrates how the relationship the CHW builds with a patient helps to engage them in taking an action to protect and promote their health�

In January 2018, the CHW called a patient at Gardiner Family Medicine for the first time� That initial call was followed by two additional calls and a home visit as per the protocol� The three calls and home visit yielded zero results so in February, the CHW gave up and recorded the patient as “unreachable�”

Three months later, in May, CHW was surprised when the patient called and left him a voice message� The patient told the CHW that he could only speak after 5 p�m�, which is outside of the CHW’s regular working hours, so the CHW shifted his schedule to contact the patient�

In June, the CHW finally reached the patient via telephone� He learned that the patient is a current smoker who is interested in quitting with the nicotine patch as well as talking to his care provider about lung cancer screening via low-dose CT scan (LDCT)�

The CHW was able to task a tobacco cessation discussion to the patient’s provider through the electronic health record� When the CHW looked at the appointment, he could see that tobacco cessation was not discussed and worked with the nurse manager at the practice to schedule a tobacco cessation and SDM (shared decision-making) visit with the provider� By September, the patient completed the SDM visit, scheduled a LDCT, engaged in a tobacco cessation discussion and got a prescription for the nicotine patch�

In summary, it took four attempts and four months to establish contact with the patient� From the date that the CHW first reached out to the patient and the date that the LDCT was scheduled, eight months had passed�

Overall, the CHW contacted the patient 11 times, resulting in five risk reduction actions. CHWs’ motivational interviewing skills, patience, flexibility and relationship building are all critical to engaging a hard-to-reach demographic� Furthermore, the CHW’s ability to communicate with the practice through the electronic health record was important in coordinating this patient’s care�

From August 2017 when the primary care pilot to December 2018, CHWs reached 1,247 patients and community members� Of that number, 279 people took a lung cancer risk reduction: had a LDCT, called the Maine Tobacco Helpline and/or tested their home for radon/arsenic�

CHW Mark Bourassa also participated in the HACCC’s Cancer Survivors Day in September and in the free Cancer Screening and Education Day in November� As a former smoker whose wife died of lung cancer, Mark was available to discuss tobacco cessation with community members� He also distributed free radon kits�

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“We’re happy to have this partnership with Prevention & Healthy Living to reach more people in our community,” said Debbie Bowden, administrative director, Oncology Services� “We know that some people are reluctant to engage with the health care system and the personal relationship offered by the CHW can make all of the difference�”

In 2019, the HACCC Cancer Committee and Prevention & Healthy Living (PHL) look forward to partnering in a project to increase the number of people who return for an annual LDCT following their baseline screening� This project will bring together the HACCC, along with Radiology & Diagnostic Imaging, MaineGeneral Pulmonary and MaineGeneral Surgery (Thoracic), to ensure that MGMC patients get the best possible care and that lung cancer is detected early when treatment is most beneficial for patients�

“We’re excited about the plans for the year ahead,” said Point-of-Entry Navigator Kerri Medeiros� “We’re looking forward to working with Mark and the PHL team to prevent more lung cancer in our service area� Most lung cancers are detected late when treatment is less successful� Together, we can turn that picture around and tell a new story about lung cancer in Central Maine�”

ScreeningThe Harold Alfond Center for Cancer Care offered a free Cancer Screening and Education Day on Nov� 6 from 2 to 6 p�m� Community members took advantage of head and neck cancer screenings, skin cancer screening, lung cancer screening information, and oncology nurses were available to answer questions on breast, colorectal, prostate and HPV related cancers� People also had the opportunity to learn about healthy eating to prevent cancer and were offered free radon test kits and smoking cessation information� 56 people attended the event, and two cancers were detected by the skin cancer screening team�

Thank you to Dr� Akshu Balwan, Dr� Gabriel Belanger, Community Health Worker Mark Bourassa, Nurse Navigator Nicole Brown, Dr� Maulik Dhanda, Dr� Michael Makaretz, Nurse Navigator Kerri Medeiros, Dr� Joshua Sparling, genetic counselor Kathleen Gravelin and dietitian Donna Walsh who gave their time to help make this event a success� The HACCC is committed to giving people the tools they need to prevent cancer through prevention, early detection and treatment� We are grateful that

so many community members look to us for not only cancer care but also information about how to prevent cancer and how to detect it early when treatment is most beneficial to patients�

Cancer Survivors DayCancer is a family matter� This statement was an impetus for the development of Cancer Survivors Day (CSD) 2018 at the Harold Alfond Center for Cancer Care� The impact of cancer on the family unit contributed to the theme for this year’s event — “Hope …changes everything!”

The focus of this annual event was to look at the patient, the family and even into the community� A cancer diagnosis inevitably has a ripple effect, touching the lives of many� Understandably, a cancer diagnosis can yield a negative reaction, filling one with anxiety and fear� The message shared at CSD was “to replace fear with hope” by sharing positive outcomes of families impacted by cancer and providing education about new technology� We also shared other opportunities and initiatives through clinical trials, research, genetics and new cancer treatments, such as Immunotherapy� Using these methods may help to reduce and hopefully one day even eliminate cancer altogether�

The CSD audience, compiled of all ages, gathered together under the opening ceremony tent to hear messages of hope� Two members of The Jackson Laboratory kicked off the presentation sharing their work supported by the Alfond Foundation� Their work brings hope to a whole new level of excellence!

Following their presentation, the crowed heard powerful messages from three cancer survivors who shared their unique stories of how cancer not only invaded their own lives, but their family units as well� Despite this invasion, they encouraged those in attendance to not lose hope, but to find strength and joy by focusing on the positive things in life�

After the speakers shared their stories, their children took the stage and ended the opening ceremony singing a song appropriately titled, “It’s All Right Now�” A standing ovation, along with many tears, suggested that fear was diminished as hope resonated throughout the day�

Following the opening ceremony, the crowd of more than 1,200 enjoyed an afternoon of a variety of activities� The time was filled with celebration and a chance to network and interact with over 40 community supportive resources� Attendees

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could learn more about preventive care, get tips for healthy living and more� Community practitioners offered evidence-based integrative therapies such as massage, reiki, reflexology and more� These therapies are often found to reduce toxicities associated with cancer treatments� Free skin cancer screening was provided by two of MaineGeneral’s board-certified dermatologists, with many participants referred to a dermatologist for further assessment�

We are grateful to all who participated in this outstanding day, making memories and bringing hope and joy to so many�

Milestone BellThe bell-ringing ritual at the end of chemotherapy or radiation has become common across the country� This ritual, often viewed as a celebration, has been in existence for almost 20 years and many have suggested that we implement it at our cancer center�

Initially, the concept appeared to be associated only with joy and one that patients and families would receive in a positive manner� However, after exploring this bell-ringing ritual in depth, we learned that some patients viewed this act as insensitive toward those who may never have the opportunity to ring the bell associated with a cure or completion of treatment�

With this information in mind and the desire to find a way to bring the bell ringing to the center, we brought the concept of the Milestone Bell to the Harold Alfond Center for Cancer Care (HACCC) Patient & Family Advisory Council to gain their insight, guidance and approval� The council was briefed on the history of the intent of the original chemo/radiation bell and also on the negative perspectives we heard�

We proposed calling it a Milestone Bell so patients could ring it when they achieved a milestone that was defined by them� The milestone could indeed be the completion of therapy with a curative intent, or could be to walk a daughter down the aisle on her wedding day� The milestone, as noted in a poem to accompany the bell, puts the patient in control, stating, “big or small, it’s your call, for it’s your milestone after all!”

The Milestone Bell was introduced at the HACCC’s annual Cancer Survivors Day and was mounted outside the front and back entrances of the cancer center� We tell patients about its purpose and its availability at their discretion�

Jenn Kelley, cancer survivor and one of the speakers at this year’s Cancer Survivors Day, is shown below ringing the Milestone Bell� When asked what milestones she has achieved, she shared the following:

“As soon as I completed my chemotherapy treatments, I felt two things — Thankful and Grateful. Thankful that these days of feeling so ill might soon be over and Grateful for these days of feeling ill because as sick as chemotherapy made me, it saved my life! I’ve been given another chance to live in this body that only a year ago was stricken with a large mass called cancer. Once I rang this milestone bell, it meant I now got to live again with a new attitude.”

“This bell signifies a new life of GETTING to do all the mundane things I used to say I had to do. Most days before my cancer diagnosis, I uttered the words ‘I have to go to work, fold the laundry and do the dishes.’ I no longer live in that world. I now live a life where ‘I had to’ and ‘I have to’s’ turned into ‘I GOT to’ and ‘I GET to.’ I GET to go to work; I GET to fold those clothes; and I GET to wash every last dish in that sink.’ The Milestone bell reminds me of how blessed I am each and every day!”

Jenn Kelley

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The Harold Alfond Center for Cancer Care (HACCC) is a Commission on Cancer (CoC) accredited cancer that is recognized for its high commitment to providing comprehensive, high-quality and multi-disciplinary patient-centered care� Standards of care, along with national benchmarking data, provide the HACCC direction and assistance in improving patient outcomes and enhancing care�

Standard 1.5 Programmatic Goal 2018: Supportive Care Visit Standard 1.5 Programmatic GoalDevelop a framework for the supportive care visit which includes distress screening, review of illness, review of treatment and review of patient goals by the end of calendar year 2018� Measure: 90 percent of the time the Supportive Care Visit documentation will contain all of the following elements: distress screening, review of illness, review of treatment and review of patient goals

A cancer diagnosis comes to most without any warning, creating symptoms of distress and anxiety related to the unknown� These feelings are normal and require intervention from the well-trained clinical team at the HACCC� Symptom management is also critical to address on a timely basis and is unique to each patient� Developing a plan of care that personalizes the action plan for each individual is essential� Unfortunately, this can be difficult to accomplish due to the many patient care-related priorities that compete with the limited face-to-face time among patients, caregivers and the medical team�

ImplementationIn an effort to develop a meaningful supportive care visit, a core group of HACCC staff including management, social workers and clinicians, gathered to brainstorm and create a clinical procedure and framework to provide supportive care services to patients and their caregivers� This group met regularly to create a template for supportive care visits�

It was determined that the supportive care visit should take place in a pleasant, well-lit room that is a different environment than where we usually meet to discuss the details of cancer and treatment� Our goal is to provide a fresh atmosphere for the patient and caregivers to reflect on the larger human issues with their cancer experience� We hope to allow a gentle inquiry into whatever issues are most pressing to patients/caregivers so discussion and helpful interventions may follow�

The supportive care visit may include areas of suffering, such as prognostic uncertainty, physical pain, other physical distress, emotional and psychosocial distress, financial/insurance concerns, end-of-life-related concerns and advanced planning� The direction of the discussion is driven by each patient’s priorities�

Interventions may include continued social work support, medical treatments for pain, insomnia or fatigue, referrals to Oncology Rehab, ordering new imaging tests to explore unaddressed complaints, or clarifying intent and duration of current therapy� Additionally, simply setting aside time for the patient to consider and communicate about areas of suffering and need has a therapeutic effect for the patient and family, and develops greater familiarity between caregivers and patients that richens future interactions�

Documentation of the supportive care visit should include distress screening, review of illness, review of treatment and review of patient goals�

Cancer Program Standards: Ensuring Patient-Centered Care


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ResultsIn a nearly six-month period ending November 21, 2018, 35 supportive care visits were scheduled and 28 were completed� Documentation of these visits improved between summer and fall as clinicians became more comfortable with the format�

% of Time Components of Supportive Care Visit Were Documented

0

20

40

60

80

100

Summer 2018 Audit Fall 2018 Audit

Distress Screening

Review of Illness

Review of Treatment

Goals of Care

We conducted a telephone survey to determine patient satisfaction with the visit as well as barriers to attending the visit� Overall, patients felt the visit was helpful� Significant barriers to supportive care visits included additional copays, transportation and lack of clarity on the patient’s part as to the purpose of the visit at time of scheduling�

Ongoing Action StepsWe look forward to continuing our effort to provide supportive care at each and every medical oncology patient encounter, as well as dedicated supportive care visits at intervals along the continuum of care� Plans are underway to develop a brochure describing supportive care to give to patients at the time of chemotherapy teaching� All HACCC staff will receive education regarding when to recommend or order a supportive care visit� We will continue to deepen our collective commitment and understanding of supportive care and effective interventions to improve the quality of life of our patients and caregivers throughout the continuum of cancer care�

Standard 1.5 Clinical Goal: Staging DocumentationThe Quality Oncology Practice Initiative (QOPI®) is national oncologist-led, practice-based quality assessment and improvement program for ASCO (American Society of Clinical Oncology) members� The goal of QOPI® is to promote excellence in cancer care by helping hematology-oncology practices create a culture of self-examination and improvement� We are proud to state that the Harold Alfond Center for Cancer Care has been certified by QOPI® since 2010 and is one of only four centers in Maine to receive this certification� The QOPI® quality measures are congruent with the Commission on Cancer quality measures and ensure that our patients receive the high-quality cancer care they deserve�

Each calendar year, the cancer committee establishes, implements and monitors at least one clinical goal for endeavors related to cancer care� Ongoing monitoring of QOPI® data revealed we were not meeting national benchmarks with regard to staging documentation� The QOPI® benchmark for documentation of staging was between 85 and 86 percent over a three-year period and HACCC documentation was between 70 – 80 percent during that same period� The Cancer Committee decided that staging documentation Our staff meet national quality benchmarks�

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should be consistent with national benchmarks and developed a clinical goal to ensure we were meeting the national benchmark�

Clinical GoalStaging documentation will be present in the medical record within one month of patient clinical visit at least 90 percent of the time�

Implementation and Monitoring The oncology providers came together to discuss issues related to staging documentation and to develop a plan to ensure more consistent staging documentation� A consensus was reached to document staging more consistently within one month of the initial visit and to place the documentation of staging in the opening of their initial note for easy access to staff needing this information for patient care�

To help hardwire this documentation, internal audits would be done throughout the year on random charts of each medical oncologist� The internal audit results would be compared to the QOPI® benchmarks as available and shared with the clinicians on a regular basis�

ResultsA total of 120 charts were reviewed internally and 64 charts were reviewed for the spring and fall QOPI® audits� QOPI® audits were not done for the summer and winter period� As shown in the above chart, documentation of staging within the first 30 days of clinic visit improved overall from a baseline rate of 70-80 percent before the intervention to a range of 73 to 100 percent� The QOPI® benchmark spring scores had dropped significantly to 73 percent in comparison to our internal score of 82 percent� Cancer Committee members noted that new staging requirements went into effect in 2018 and the learning curve associated with these changes may have skewed the data in spring 2018�

The internal summer, fall and winter audits indicate a favorable change in practice for our medical oncologists for both criteria (location and documentation of staging)� Other team members have noticed the change in location of the staging documentation and appreciate the easy access of staging now available to them�

Ongoing Action StepsChart audits will continue into 2019 to confirm adherence to the goals� In addition, the standard of documentation of staging within 30 days of initial visit, and the placement of that documentation in the opening section of the provider’s notes, will become a part of new oncologists’ orientation to ensure ongoing compliance�

HACCC Internal HACCC QOPI Clinical Goal

% Staging Documentation within One Month of Clinic Visit

0

20

40

60

80

100

Spring 2018 Summer 2018 Fall 2018 Winter 2018

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Standard 4.8 Quality Improvement: Oral Chemotherapy Navigation Safety ProgramIntroductionTraditionally, chemotherapy has been delivered via the intravenous route in the hospital or outpatient clinic where specially trained cancer nurses can closely monitor patients for side effects and adherence to treatment� However, with the increasing use of oral chemotherapy, how patients are cared for and managed is evolving� This change is paving the way for a new treatment paradigm that shifts the delivery of chemotherapy from hospitals and outpatient clinics to the patient’s home� The implication is that patients and their caregivers now are required to take responsibility for the safe administration and monitoring of oral chemotherapy�

Oral chemotherapy offers many advantages to the patient and caregivers, including convenience associated with fewer hospital and clinic visits, no need for intravenous access and an increased sense of control for the patient� However, this route of delivery potentially poses significant challenges for health care professionals, many of which revolve around adherence, side-effect monitoring and safety issues for the patient and their caregiver in the home setting� Literature suggests that the role of the cancer nurse in providing education, monitoring for side effects and follow-up care is pivotal to successful cancer treatment and optimal clinical outcomes for patients receiving oral chemotherapy�

StudyAs part of a grant from the Maine Cancer Foundation, we conducted a quality study of our current Oral Chemotherapy Safety Program� Through a literary search, we reviewed national standards related to the administration and management of oral chemotherapy agents and compared them to our current practice� An audit tool was developed for use in our study� We looked at 32 patient charts (November-December 2017) looking for barriers and areas of potential improvement to our current program�

FindingsWe noted several areas of opportunity for improvement in our current Oral Chemotherapy Safety Program:

• lack of designated staff to navigate patients through the complicated process of obtaining their medications which often requires prior authorization from insurance companies;

• lack of designated staff to help patients with financial assistance through cancer foundations; and

• process improvements related to the frequency of follow-up calls to assure adherence and lack of side effects�

Improvements/Outcomes of StudyOne of our key outcomes was to initiate the role of an Oral Chemotherapy Nurse Navigator starting November 5, 2018� This role allows for a dedicated team of RNs to help patients who are newly starting on oral chemotherapy agents to navigate this often complicated process� These nurses:

• verify insurance benefits through a prior authorization process with the patient’s insurance company;

• obtain financial support through cancer foundations;

• make weekly calls to all patients who are new to starting these agents to make sure they are taking the pills correctly as sometimes multiple pills are required� These weekly calls continue until the patient meets criteria established before being removed from the Safety Program;

• monitor for potential side effects and take early actions to minimize these side effects;

• provide and reinforce education;

• coordinate follow-up care if needed; and

• work with pharmacies to refill prescriptions�

Other process improvements also occurred with the development of this role:

• We updated our current policies and procedures to reflect changes in standard of care related to oral chemotherapy agents�

• We developed a tracking tool to ensure weekly calls occurred�

• We developed standardized documentation notes for telephone calls that include administration instructions, precautions, monitoring of side effects and other important information�

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Radiation Oncology 2018It has been about two years since two new linear accelerators (LINACs) called Varian TrueBeam have been commissioned for radiation therapy treatment� These machines are more technologically advanced with more efficient and precise treatment relative to our previous machines� Technological advancement in the field of radiation oncology has been happening very quickly� Our new TrueBeam machines were designed from scratch with IGRT (Image-Guided Radiation Therapy), IMRT (Intensity-Modulated Radio Therapy) , and VMAT (Volumetric Arc Therapy) in mind�

Since the new LINACs were commissioned, an increasing number of patients have been able to be treated with SRS (Stereotactic Radio Therapy) and SABRT (Stereotactic Ablative Body Radio Therapy)� These methods are for small lesions of cancer in the brain (SRS) or body such as lung (SABRT) at certain stages of cancer� The flexibility of the new LINACs has also made the conventional radiation therapy treatment more efficient� It is now possible to add new image verifications on the fly during the treatment session as necessary� Previously, this required a radiation planning modification which required additional steps and time�

Let me highlight our new addition to our treatment method� We started using the new form of high-energy X-ray beam called FFF (Flattening Filter Free) X-ray beam in early 2018� Our LINACs are equipped to produce this new form of X-ray beam for the treatment� The advantage is the high yield of beam per unit time� The regular X-ray beams of the LINACS had max dose rate of 600 MU/min� FFF beams have as high as 1,400 MU/min for 6MV FFF beam and 2,400 MU/min for 10MV FFF beam� The higher rate of beam delivery definitely shortens the time to treat small tumors for certain cases such as SRS and SBRT� This significantly shorter beam ON time for higher dose treatment contributes to better patient comfort and minimizes the probability of patient motion during the treatment� The time advantage of FFF beam is only realized in certain cases with a small field and high-dose treatment such as SRS and SBRT� However, when the conditions are met, it is a very powerful tool for cancer treatment�

The LINACs are equipped with FFF beams, but we needed to undergo rigorous verification, measurement and testing of the verification software before actually using it for patient treatment� We are happy that FFF beams have been commissioned and are now fully used� We will continue to work to enhance the potential functionalities of the new LINACs as well as look for any new methods to improve the quality of radiation therapy for our patients�


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MaineGeneral Cancer Registry Report

Sex Class of Case Status Stage Distribution - Analytic Cases Only

Primary Site M F Analy NA Alive Exp Stg 0 Stg I Stg II Stg III Stg IV 88 Unk Blank/OthORAL CAVITY & PHARYNX 41 (3�5%) 31 10 38 3 32 9 2 2 2 10 21 0 1 0Tongue 13 (1�1%) 9 4 11 2 9 4 1 0 0 1 8 0 1 0Salivary Glands 2 (0�2%) 1 1 2 0 2 0 0 0 1 0 1 0 0 0Floor of Mouth 3 (0�3%) 3 0 3 0 2 1 1 0 0 1 1 0 0 0Gum & Other Mouth 7 (0�6%) 3 4 7 0 4 3 0 0 1 2 4 0 0 0Nasopharynx 3 (0�3%) 2 1 3 0 3 0 0 0 0 2 1 0 0 0Tonsil 9 (0�8%) 9 0 9 0 9 0 0 1 0 3 5 0 0 0Oropharynx 1 (0�1%) 1 0 1 0 1 0 0 0 0 0 1 0 0 0Hypopharynx 3 (0�3%) 3 0 2 1 2 1 0 1 0 1 0 0 0 0DIGESTIVE SYSTEM 146 (12�4%) 82 64 128 18 87 59 2 20 29 19 52 0 3 3Esophagus 13 (1�1%) 10 3 13 0 5 8 0 1 5 1 5 0 1 0Stomach 20 (1�7%) 13 7 18 2 11 9 0 5 4 3 6 0 0 0Small Intestine 3 (0�3%) 2 1 3 0 2 1 0 0 0 0 3 0 0 0Colon Excluding Rectum 40 (3�4%) 19 21 35 5 33 7 2 9 10 6 8 0 0 0Cecum 7 0 7 7 0 5 2 1 1 0 3 2 0 0 0Appendix 2 0 2 2 0 2 0 0 2 0 0 0 0 0 0Ascending Colon 6 3 3 6 0 4 2 0 0 2 1 3 0 0 0Hepatic Flexure 2 2 0 2 0 2 0 0 1 1 0 0 0 0 0Transverse Colon 5 2 3 4 1 4 1 0 0 3 0 1 0 0 0Splenic Flexure 2 1 1 2 0 2 0 0 0 1 1 0 0 0 0Descending Colon 2 1 1 2 0 2 0 0 1 1 0 0 0 0 0Sigmoid Colon 10 8 2 9 1 9 1 1 4 2 1 1 0 0 0Large Intestine, NOS 4 2 2 1 3 3 1 0 0 0 0 1 0 0 0Rectum & Rectosigmoid 14 (1�2%) 9 5 12 2 12 2 0 2 3 2 5 0 0 0Rectosigmoid Junction 2 1 1 2 0 1 1 0 1 0 0 1 0 0 0Rectum 12 8 4 10 2 11 1 0 1 3 2 4 0 0 0Anus, Anal Canal & Anorectum

7 (0�6%) 3 4 7 0 6 1 0 0 4 2 0 0 0 1

Liver & Intrahepatic Bile Duct 13 (1�1%) 9 4 9 4 6 7 0 2 1 1 4 0 0 1Liver 10 7 3 6 4 6 4 0 2 0 1 2 0 0 1Intrahepatic Bile Duct 3 2 1 3 0 0 3 0 0 1 0 2 0 0 0Gallbladder 2 (0�2%) 1 1 1 1 1 1 0 0 0 0 1 0 0 0Other Biliary 3 (0�3%) 1 2 3 0 1 2 0 1 0 0 1 0 1 0Pancreas 30 (2�5%) 15 15 26 4 10 20 0 0 2 3 19 0 1 1Peritoneum, Omentum & Mesentery

1 (0�1%) 0 1 1 0 0 1 0 0 0 1 0 0 0 0

RESPIRATORY SYSTEM 260 (22�0%) 122 138 232 28 162 98 2 84 20 38 82 0 6 0Larynx 7 (0�6%) 5 2 6 1 7 0 2 2 1 0 1 0 0 0Lung & Bronchus 252 (21�3%) 116 136 226 26 155 97 0 82 19 38 81 0 6 0Pleura 1 (0�1%) 1 0 0 1 0 1 0 0 0 0 0 0 0 0SOFT TISSUE 10 (0�8%) 5 5 10 0 6 4 0 2 2 2 4 0 0 0Soft Tissue (including Heart) 10 (0�8%) 5 5 10 0 6 4 0 2 2 2 4 0 0 0SKIN EXCLUDING BASAL & SQUAMOUS

63 (5�3%) 35 28 49 14 57 6 22 18 5 2 0 0 0 2

Melanoma -- Skin 54 (4�6%) 30 24 44 10 49 5 22 17 4 1 0 0 0 0Other Non-Epithelial Skin 9 (0�8%) 5 4 5 4 8 1 0 1 1 1 0 0 0 2BASAL & SQUAMOUS SKIN 1 (0�1%) 0 1 0 1 1 0 0 0 0 0 0 0 0 0Basal/Squamous cell carcinomas of Skin

1 (0�1%) 0 1 0 1 1 0 0 0 0 0 0 0 0 0

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Sex Class of Case Status Stage Distribution - Analytic Cases OnlyPrimary Site M F Analy NA Alive Exp Stg 0 Stg I Stg II Stg III Stg IV 88 Unk Blank/OthBREAST 193 (16�3%) 3 190 173 20 181 12 25 81 44 15 5 1 1 1Breast 193 (16�3%) 3 190 173 20 181 12 25 81 44 15 5 1 1 1FEMALE GENITAL SYSTEM 63 (5�3%) 0 63 52 11 55 8 1 23 6 9 12 0 1 0Cervix Uteri 8 (0�7%) 0 8 8 0 7 1 0 2 2 2 2 0 0 0Corpus & Uterus, NOS 31 (2�6%) 0 31 27 4 30 1 0 20 1 2 3 0 1 0Ovary 8 (0�7%) 0 8 6 2 3 5 0 0 1 1 4 0 0 0Vulva 7 (0�6%) 0 7 3 4 7 0 1 0 2 0 0 0 0 0Other Female Genital Organs 9 (0�8%) 0 9 8 1 8 1 0 1 0 4 3 0 0 0MALE GENITAL SYSTEM 143 (12�1%) 143 0 122 21 133 10 0 13 71 25 13 0 0 0Prostate 138 (11�7%) 138 0 117 21 130 8 0 11 71 22 13 0 0 0Testis 5 (0�4%) 5 0 5 0 3 2 0 2 0 3 0 0 0 0URINARY SYSTEM 93 (7�9%) 74 19 76 17 72 21 20 18 6 10 16 2 3 1Urinary Bladder 55 (4�7%) 45 10 45 10 45 10 20 8 5 6 6 0 0 0Kidney & Renal Pelvis 35 (3�0%) 26 9 29 6 24 11 0 10 1 4 10 2 1 1Ureter 1 (0�1%) 1 0 1 0 1 0 0 0 0 0 0 0 1 0Other Urinary Organs 2 (0�2%) 2 0 1 1 2 0 0 0 0 0 0 0 1 0EYE & ORBIT 1 (0�1%) 1 0 0 1 1 0 0 0 0 0 0 0 0 0Eye & Orbit 1 (0�1%) 1 0 0 1 1 0 0 0 0 0 0 0 0 0BRAIN & OTHER NERVOUS SYSTEM

18 (1�5%) 8 10 17 1 10 8 0 0 0 0 0 17 0 0

Brain 13 (1�1%) 7 6 12 1 6 7 0 0 0 0 0 12 0 0Cranial Nerves Other Nervous System

5 (0�4%) 1 4 5 0 4 1 0 0 0 0 0 5 0 0

ENDOCRINE SYSTEM 16 (1�4%) 10 6 11 5 15 1 0 5 0 2 0 3 1 0Thyroid 10 (0�8%) 5 5 8 2 9 1 0 5 0 2 0 0 1 0Other Endocrine including Thymus

6 (0�5%) 5 1 3 3 6 0 0 0 0 0 0 3 0 0

LYMPHOMA 44 (3�7%) 30 14 40 4 34 10 0 11 9 7 11 0 2 0Hodgkin Lymphoma 5 (0�4%) 5 0 4 1 5 0 0 1 2 0 1 0 0 0Non-Hodgkin Lymphoma 39 (3�3%) 25 14 36 3 29 10 0 10 7 7 10 0 2 0NHL - Nodal 22 14 8 21 1 16 6 0 1 6 7 5 0 2 0NHL - Extranodal 17 11 6 15 2 13 4 0 9 1 0 5 0 0 0MYELOMA 11 (0�9%) 7 4 9 2 8 3 0 0 0 0 0 9 0 0Myeloma 11 (0�9%) 7 4 9 2 8 3 0 0 0 0 0 9 0 0LEUKEMIA 23 (1�9%) 16 7 21 2 14 9 0 0 0 0 0 21 0 0Lymphocytic Leukemia 5 (0�4%) 3 2 5 0 3 2 0 0 0 0 0 5 0 0Acute Lymphocytic Leukemia 1 0 1 1 0 0 1 0 0 0 0 0 1 0 0Chronic Lymphocytic Leukemia

4 3 1 4 0 3 1 0 0 0 0 0 4 0 0

Myeloid & Monocytic Leukemia

17 (1�4%) 13 4 15 2 10 7 0 0 0 0 0 15 0 0

Acute Myeloid Leukemia 10 9 1 9 1 4 6 0 0 0 0 0 9 0 0Chronic Myeloid Leukemia 6 3 3 5 1 6 0 0 0 0 0 0 5 0 0Other Myeloid/Monocytic Leukemia

1 1 0 1 0 0 1 0 0 0 0 0 1 0 0

Other Leukemia 1 (0�1%) 0 1 1 0 1 0 0 0 0 0 0 1 0 0MESOTHELIOMA 3 (0�3%) 2 1 3 0 2 1 0 0 0 0 3 0 0 0Mesothelioma 3 (0�3%) 2 1 3 0 2 1 0 0 0 0 3 0 0 0MISCELLANEOUS 52 (4�4%) 29 23 29 23 26 26 0 0 0 0 0 28 0 1Miscellaneous 52 (4�4%) 29 23 29 23 26 26 0 0 0 0 0 28 0 1Total 1,181 598 583 1,010 171 896 285 74 277 194 139 219 81 18 8Exclusions: Not Male and Not Female

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MaineGeneral 11 CELEBRATING YEARS OF HOPE · 2019-04-23 · 3 Message to Our Community We celebrate...

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