More than three years following the release of the Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor: Lost in Transition, several adult survivorship care plans are starting to surface from several sources.
In November 2005 the IOM recommended that patients completing primary cancer treatment receive a comprehensible comprehensive care summary and follow-up plan that would summarize critical information needed for their long-term care.
Figure. ELLEN STOVAL...Image Tools
This was in recognition of the burgeoning number of cancer survivors and the need to provide them with an appropriate roadmap to continue their post-treatment journey that would most likely include encounters with primary care physicians and other oncology professionals.
Although completing some sort of written report has been fairly common among many radiation oncologists, surgical oncologists, and pathologists, it has not been a traditional part of most medical oncology practices.
Joseph O. Jacobson, MD, Chair of the American Society of Clinical Oncology's Quality of Care Committee and Chairman of Medicine at North Shore Medical Center and Salem Hospital in Massachusetts, told OT that medical oncologists are currently the only cancer providers who do not provide detailed summaries of what they've done. We somehow feel we've been immune from the need to document the care we provide.
But that is about to change, even though according to Dr. Jacobson it will require a real sea change in the practice of medical oncology.
Now, three different survivorship care plan initiatives for adults are under way or about to be launched for use outside of individual institutions where a number have been available for their patients.
For example, at Memorial Sloan-Kettering Cancer Center, simple treatment summaries and survivorship care plans have been developed and used in each of its clinics for the last two years, said Mary McCabe, RN, MA, Director of both the center's Cancer Survivorship Program and the LIVESTRONG Survivorship Center of Excellence, one of eight such programs in the nation.
Two of the new plans-Journey Forward, involving the National Coalition for Cancer Survivorship (NCCS), UCLA Cancer Survivorship Center, WellPoint Inc., and Genentech-and the other, an ASCO initiative-were open about discussing their projects.
New OncoLink-LAF Project Based on OncoLife
The third, a collaborative effort of the University of Pennsylvania Abramson Cancer Center's OncoLink and the Lance Armstrong Foundation (LAF), was much more proprietary about its plans, with LAF refusing to comment before, it said, the co-branding efforts and marketing plan were completed.
The OncoLink-LAF project, which is based on OncoLink's existing OncoLife Survivorship Care Plan that debuted at ASCO in 2007, also raised some concerns within the cancer community because it offers templates for adult cancer survivors' care plans directly to patients without built-in oversight by oncology professionals providing individualized perspective.
Although OncoLink said its Web site had caveats encouraging patients to consult oncology professionals, as of press time for this article there was no such disclaimer on the questionnaire page (www.oncolink.org/oncolife/ltse_questions-v4.cfm), which states: OncoLink has created an individualized plan of care based on the Institute of Medicine recommendations for cancer survivors. This free and easy to use program provides cancer survivors with information regarding the health risks they face as a result of cancer therapies.
One oncologist who requested anonymity said he'd be reluctant to present the care plan to patients because it dealt extensively with side effects and wasn't based on a carefully constructed medical history.
Nonetheless the advent of survivorship care plans should help stimulate discussions about their use among cancer providers and patients, nudging along a process that has been late in coming.
Ellen Stovall, former President and CEO of NCCS who is currently serving the same role in an acting capacity following the departure of her successor, Cathy Bonner, at the end of December, has been a long-time proponent of patient treatment summaries and survivorship care plans.
Ms. Stovall served as Co-Chair and Co-Editor with Sheldon Greenfield, MD, of the IOM's Committee on Survivorship, which produced Lost in Transition in 2005.
Journey Forward
Figure. PATRICIA GAN...Image Tools
She talked about Journey Forward (www.journeyforward.org) in January when it was starting its soft launch to approximately 5,000 oncologists in Colorado, California, Nevada, Maine, and New Hampshire, with follow-up to some 8,000 patients from the same states in February and March.
We've been developing Journey Forward for the last three years, and we're starting out with survivorship care plans in the areas of colorectal and breast cancers because they're two of the most common cancers, and information is needed about the long-term effects of cancer surveillance and follow up in terms of prevalence.
The program also has a generic template for other cancers, and there are hopes to expand its list of more-specific cancer sites.
Journey Forward was developed by NCCS in collaboration with Patricia A. Ganz, MD, who was a member of the IOM survivorship committee, and co-chaired with Ms. Stovall an NCCS-ASCO conference as follow-up to the report.
Dr. Ganz, Professor at UCLA Schools of Medicine and Public Health in the Division of Cancer Prevention & Control Research at Jonsson Comprehensive Cancer Center, is also Director of UCLA's LIVESTRONG Survivorship Center of Excellence.
She has served on numerous ASCO committees, including as Co-Chair with former ASCO President Sandra J. Horning, MD, of its Survivorship Task Force (OT, 7/25/06).
Other partners include WellPoint Inc., the health insurer with the largest number of members in the nation, and Genentech Inc.
Journey Forward was designed for primary care physicians and oncologists and their patients who've recently completed active treatment, and offers survivors a guide through the next steps in their cancer journey.
The program encourages survivors and their health care providers to work together as a team following active treatment, and provides a downloadable medical history builder that can be printed to record personal medical histories and a survivorship care plan builder for physicians to create custom care plans quickly.
We want this to be a shared decision-making, shared communication, and patient-driven initiative, but that won't happen until physicians buy into it, Ms. Stovall said.
Patients can demand their own care plans all they want, but they can't build it without a medical history buildup, and they need to get that from their physicians. I don't want to diminish patient-physician relationships and that's why if anything, I want survivors to feel a sense of autonomy and I want them to feel they are stronger if they're working with someone who knows all the medical information that is critical for the next step.
She said that the information can be provided by physicians or nurse practitioners as long as someone is responsible for delivering the best practices in medicine to them, and that the cancer care delivery process has to be coordinated and comprehensive, which will definitely improve the patient experience.
NCCS is working legislatively as well as administratively with Medicare and other private payers to include reimbursement for creating survivorship care plans, Ms. Stovall said.
We want to have an attitude of valuing this process, not just so it will get done but so people will also realize how important it is.
Dr. Ganz explained that Journey Forward is basically electronically adapting the breast and colorectal cancer templates she helped develop for ASCO that are linked to the Society's surveillance guidelines and other health promotion efforts.
We as a community are trying to give everyone as many tools and strategies to make this happen, and for the last two years ASCO has been diligently working with all the electronic health centers to have these templates in the records so you can get a plan and a treatment summary by pushing a button.
She said this has been a key activity promoted by ASCO and that the treatment summaries and care plans are one of the measures in ASCO's Quality Oncology Practice Initiative (QOPI).
Considered IOM Report a Call to Action
Michael Belman, MD, MPH, Medical Director for Clinical Quality for Anthem Blue Cross, part of WellPoint, and Jennifer Hausman, MPH, Anthem's Clinical Research Manager, said that WellPoint considered the IOM report a call to action, and realizing the need for survivorship care plans, developed a CME program for its physician members, working with focus groups and doing extensive market research.
In 2006 the company held a live CME program chaired by Dr. Ganz in California for about 100 participants.
The CME program was a little ahead of the curve, and perhaps a little too early, Ms. Hausman said. We knew we could reach more people by going online and extended invitations to NCCS, UCLA, and Genentech to join us for Journey Forward. Genentech expressed interest since it was committed to cancer survivorship.
The first phase of the pilot program was the rollout of information to the 5,000 oncologists in January, followed by the mailing of information to 8,000 patients in the same states for late February or early March.
Later phases include expanding Journey Forward to not-for-profit organizations that target patients, cancer centers, and primary care physicians, with additional states being added over time.
The breast and colon cancer templates have ASCO's surveillance guidelines integrated into them, and the generic templates will be more specifically customized by other tumor types over time, she said.
Our data demonstrates that primary care physicians feel more competent when receiving additional cancer-related information about their patients, said Ms. Hausman, adding that WellPoint initially made a decision to de-commercialize Journey Forward as much as possible, and its resources will be available to physicians outside their network.
Can Be Reimbursable
Dr. Belman said that with appropriate coding and documentation, the survival care plan incorporated with an office visit can be reimbursable.
ASCO Quality Care Chair Dr. Jacobson said that the Society has been focusing on ways to make survival care more standardized and patient-focused for several years, and cited an unpublished white paper by Deborah Schrag, MD, MPH, of the Center for Gastrointestinal Oncology at Dana-Farber Cancer Institute, the Cancer Treatment Summary-Changing the Culture of Documentation to Facilitate High Quality Cancer Care, that resides on ASCO's Web site (www.asco.org/ASCO/Downloads/Cancer%20Policy%20and%20Clinical%20Affairs/Quality%20of%20Care/Backgroundon%20Treatment%20Summary_Schrag.pdf).
Hope ASCO Templates Will Be Useful for Multiple Purposes
We hope the templates [www.asco.org/treatmentsummary] created by ASCO are of value for multiple different customers, Dr. Jacobson said. The medical oncologist will find the document very useful because it succinctly and synoptically describes the details of the cancer diagnosis and treatment course, making it good for record-keeping and covering for others in a busy practice.
It also empowers primary care physicians so they can finally understand what's happening behind the closed door of the oncology practice, and finally we'd like these made available for patients as well. The challenge is to create a document that can fulfill all three of these functions, and we've tried to include in the templates just enough pertinent clinical information to meet the needs of medical record-keeping and providing efficiency in practice but also to be read by primary care providers, patients, and families so they have the information needed to make decisions about planning follow up.
Dr. Jacobson said the templates are intended to be completed by a member of the oncology care team-a physician, nurse clinical specialist, oncology nurse, nurse practitioner, or physician assistant-because we definitely feel that for the information to be accurate and valuable, it should be generated at the practice and should include accurate staging and diagnosis, and the chemotherapy treatment plan and summary.
The summary comes at the end of treatment and is focused on survivorship, he added.
Started at Time of Hurricane Katrina
But we felt early on that there was also a need for a document to be given to the patient when the treatment is initiated. The timing of this was around Hurricane Katrina, when we knew a lot of patients were in the middle of a course of chemotherapy and treatment had to be farmed out distantly without a clue to their diagnosis, treatment, or treatment plan.
So as we began the process we also wanted to make sure patients were armed with a good understanding of why they were being treated. When chemotherapy is completed, the plan lists some basic elements-diagnosis, stage, goal of treatment, the actual treatment regimen, other medications that will be used in addition to chemotherapy, the potential for side effects, and lists of whom to call for issues.
In addition to the current templates for breast and colon cancer, and the generic templates that can be used for any cancer at any stage, ASCO is pilot testing templates for lung cancer.
Good Model of Passport for Care for Children with Cancer
Kristen McNiff, MPH, Director of ASCO's Quality Division, said that ASCO didn't want to duplicate the good start on the pediatric side, Passport for Care, an Internet-based survival care plan developed by researchers at Baylor College of Medicine in response to the 2003 IOM report, Childhood Cancer Survivorship: Improving Care and Quality of Life.
Our goal is to get ingrained in the medical oncology culture the idea that these plans and summaries will be documented, and we define what we think are the minimum requirements for the chemotherapy plan summary. We provide templates in modifiable form with a lot of caveats and instruction around them to try to make it clear that we don't necessarily think our form is the only way to go.
This is a starting point to support the goal that this be done and be a standard part of practice, Ms. McNiff continued. We don't see other templates as competing, and we really want to get resources out there and the idea that this is a reasonable expectation for medical oncologists.
OncoLink's OncoLife Program
Linda A. Jacobs, PhD, RN, Director of the LIVESTRONG Survivorship Center of Excellence at Penn's Abramson Cancer Center, said that she had shared information about OncoLink's OncoLife program with the LAF at a meeting in 2006, and that the foundation had followed up with OncoLink Editor-in-Chief James Metz, MD, a radiation oncologist on Penn's faculty, and Maggie Hampshire, RN, OCN, the site's managing editor.
Dr. Jacobs said she considers OncoLife to be a patient education tool and that survivorship care is integrated throughout all oncology practices at Penn.
Ms. Hampshire said that OncoLife is for the general public and that patients can fill out the forms themselves, although many are helped by oncology nurses or oncologists.
The Web site, which is in its fourth iteration, is also available in Spanish, and generates care plans that list possible long-term effects for each patient.
Initial care plans were tailored for breast and testicular cancer patients, offering a more refined tool than the generic versions, and colorectal cancer will be the next to be refined.
The care plans, generally seven to nine pages long, can be completed in 6.7 minutes on average, she said. The plans can be filled-in online or downloaded and printed, and are all anonymous, with questions asked about such things as the type of chemotherapy administrated, the area of the body radiated, the type of surgery, and whether hormones were received.
OncoLife is a way of starting the survivorship discussion and empowers survivors to ask questions about their future, Ms. Hampshire said.
OncoLife was started because of the [2005] IOM report when it became clear that patients and survivors needed information, Dr. Metz said.
We heard for years that this was needed, but no one had a product. We were the first and are still the only one broadly utilized for patients and primary care providers and it's the only Internet-based program that can be gotten from anywhere. Our goal is to get this to as many people as possible.
Dr. Metz said OncoLink had never thought of marketing OncoLife, but that changed after LAF started discussions about a partnership in 2007. In October 2008, he received a four-year $2.3 million LAF grant to expand and develop the product further.
As this story went to press at the end of February, the national launch was supposed to happen sometime that month, but the Lance Armstrong Foundation refused to say anything further ahead of time.
Need for Champion
JULIA H. ROWLAND, PhD, Director of NCI's Office of Cancer Survivorship, said that often when IOM reports are released they don't necessarily result in change unless someone champions them.
With the adult survivorship report, there was wonderful attention by individuals and organizations regarding the importance of treatment summaries and care plans.
The advocacy community's true desire, she said, was to have survivorship care plans from the outset documented through electronic health records, but she conceded that it would be a big challenge to collect that information for individuals.
NCI supported a follow-up workshop in 2005 on implementing cancer survivorship plans, she said, adding that the Survivorship Office exists to help create the evidence base for interventions.
We're the research engine that allows us to get answers, and NCI is not currently involved in the delivery side, although we are looking at the NCI Community Cancer Centers Program to work on development and delivery of treatment summaries and care plans.
In addition, she said, NCI is studying SEER (Surveillance, Epidemiology, and End Results) data for a patient-based study on follow-up care, and will be fielding a providers' survey regarding physicians' attitudes toward care of cancer survivors later this year.
© 2009 Lippincott Williams & Wilkins, Inc.