Portal de Periódicos da CAPES

Survivorship Care Plans

2007; Wolters Kluwer; Volume: 29; Issue: 13 Linguagem: Inglês

10.1097/01.cot.0000282496.65076.d6

1548-4688

Michelle Hogan,

Cancer Treatment and Pharmacology

The first crop of free, publicly available treatment summaries and care plans for survivors of cancer have been published in print and on the Internet, providing health care professionals and patients with a choice of templates to use and adjust as needed. “I think it's a start, and this is basically a cultural shift, if you will, primarily targeted at the medical oncologist or hematologist-oncologist because we have not had a culture of doing this,” said Patricia Ganz, MD, Director of the Division of Cancer Prevention and Control Research at UCLA's Jonsson Comprehensive Cancer Center. Dr. Ganz has been involved with the development of the American Society of Clinical Oncology's chemotherapy treatment plan and summary templates. A template for survivors of colon cancer was posted on ASCO's Web site earlier this year, and the template for survivors of breast cancer was being piloted in June (see box). Another template, the Cancer Survivor's Prescription for Living—largely developed by and for nurses—was printed in the April issue of the American Journal of Nursing (2007;107:58–70) (see box). And OncoLink, the cancer information Web site published by the Abramson Cancer Center of the University of Pennsylvania, added the OncoLife survivorship care plan in May, which was developed by nurses and physicians at the university for patients to use and then discuss with their health care providers (see box). The plan is available at www.oncolink.com/oncolife. A version in Spanish is also in the works, and may be online by the time this article is published. Other templates are in the developmental stages, such as breast cancer and Hodgkin's lymphoma templates from the Lance Armstrong Foundation, called the LIVE STRONG Cancer Treatment Summary (see box).Figure: Patricia Ganz, MD (shown at this year's ASCO Annual Meeting): “It doesn't really matter to me what somebody uses—it's just that people use something. The one that I'm using in my own practice is not the ASCO one. The point is that anything that can summarize what went on and can tell the patient what to do going forward is what we need to do.”A Place to Start “We realize that no one format will be 100 percent usable by everybody, so it may be that individual practitioners and clinicians will need to tweak it on their own and add some little pieces that are more specific to their practice,” said Pamela J. Haylock, MA, RN, the lead author on the Prescription for Living tool and an oncology consultant and doctoral student at the University of Texas Medical Branch School of Nursing. “But it took the authors who put it together quite a while to do it, and a practice setting trying to do this from scratch often wouldn't have time to devote to a project like that, so we hope that it provides a starting place for people to be able to offer a survivorship care plan for their patients.”Figure: Pamela J. Haylock, MA, RN: “We realize that no one format will be 100 percent usable by everybody, so it may be that individual practitioners and clinicians will need to tweak it on their own to make it more specific to their practice. But it took the authors who put the plan together quite a while to do it, and a practice setting trying to do this from scratch often wouldn't have time to devote to a project like that, so we hope that it provides a starting place for people to be able to offer a survivorship care plan for their patients.”Information is being collected on those using the OncoLife plan to guide its evolution, said James M. Metz, MD, Assistant Professor and Chief of Clinical Operations in the Department of Radiation Oncology at the University of Pennsylvania and Editor-in-Chief of OncoLink. “Even though it's anonymous, we can understand what people are looking for, in what stage of their survivorship they are looking for information, and how we can tailor our information both now and long term as we go forward,” he said of the Institutional Review Board-approved research. Common Goal While these available templates may differ in their approach—one is disease-specific and two are not—and their format—one is Web based and automated, one is a paper-based plan, and one is a word-processing document available online—they share a common goal. “It doesn't really matter to me what somebody uses—it's just that people use something,” Dr. Ganz said. “The one that I'm using in my own practice is not the ASCO one. The point is that anything that can summarize what went on and can tell the patient what to do going forward is what we need to do.” Dr. Ganz, who sees patients with breast cancer, uses an electronic medical record and has a form made up from that with drop-down menus for breast cancer staging information and common treatments, as well as open boxes for free text. “If we didn't have an electronic record I'd probably have a form that I would then fill in by hand. The point is that these templates can also be used for dictation, they can be used for just photocopying it and filling it in, or if you have an electronic record to adapt that into the record.” ‘Completeness and Practicality’ Keeping in mind the complexity associated with caring for survivors of cancer is a key part of developing successful care plans, said Noreen Aziz, MD, PhD, MPH, Senior Program Director in the Office of Cancer Survivorship at the National Cancer Institute. There is complexity on multiple levels, such as the number of health care professionals involved with a patient's care, a patient's health care needs and long-term sequelae, and the evolving nature of the oncology field itself, she added. “While everybody at this time is well aware that there are all these issues going on that need to be addressed, we are also still in the process of gathering the evidence. What is the best way to do this? What is the optimal way of delivering posttreatment survivor care? What is a care plan that is state of the art?” Other issues like patient age and the developmental stage of the patient's family should be included in a care plan, Dr. Aziz said. “A young breast cancer survivor with two young children is going to have very different needs from a survivor who's say 45 years old, has completed her family, and has children off at college, for example.” There is more work to be done, agreed Mary S. McCabe, RN, MA, Director of the Cancer Survivorship Program at Memorial Sloan-Kettering Cancer Center—where patients visiting the survivor clinics have been receiving a treatment summary and follow-up plan for the past three years—but developing these care plans is a balancing act. “I agree that we don't have the perfect template,” she said, referring to the plans that are currently available. “That said, I don't think there is going to be one perfect template, and going forward there are two issues. “One is that there needs to be a balance between completeness and practicality of being able to complete it and making it usable to the end users, so having clear basic information that can be consistently provided is important. “The other side is that whether it's Web-based or paper, the information may require a conversation with a health care provider to understand the risks, and what can be done about them, either limiting them or just being aware of symptoms that may actually be a forerunner for problems.” Lance Armstrong Foundation Treatment Summary The Lance Armstrong Foundation is currently developing two Web-based treatment summaries, one for survivors of breast cancer and one for survivors of Hodgkin's lymphoma, called the LIVE STRONG Cancer Treatment Summary. Barring complications, the summary will probably be released next spring, said Caroline Huffman, LCSW, MEd, Program Officer of the LAF. The summary incorporates risk-based guidelines, so the content will have to be updated as treatment changes. While the Lance Armstrong Foundation does not have the infrastructure to support that maintenance, the American Society of Clinical Oncology, the National Comprehensive Cancer Network, and similar organizations do, Ms. Huffman said, so the possibility of collaboration is being researched. “We're in discussion primarily with ASCO at this point in time.” OncoLife Survivorship Care Plan OncoLink, the cancer information Web site published by the Abramson Cancer Center of the University of Pennsylvania, added the OncoLife survivorship care plan in May, available at www.oncolink.com/oncolife. This Web-based plan is geared towards patients. They complete a questionnaire about the medical treatment they received for their cancer, including specific chemotherapy agents, and then receive a plan broken down by the various therapies. The plan details the long-term medical risks associated with the treatment, healthy lifestyle suggestions, symptoms to report to a health care provider, and guidelines for follow-up care. “What we really wanted to do was empower patients to understand what their risks were for developing certain problems long term, whether they be cardiac issues, pulmonary issues, issues of second malignancy, fertility issues, and empower them to get this information and be able to go to their physician and say, ‘Am I at risk for this? What should I be doing either as prevention or screening methods so we can jump on this early?’” said James M. Metz, MD, Assistant Professor and Chief of Clinical Operations in the Department of Radiation Oncology at the University of Pennsylvania and Editor-in-Chief of OncoLink. The summary also directs patients to discuss the results with their oncology team. When sections have many recommendations, a bulleted summary of take-home points often follows the lengthier discussion. “Having a summary at the end that their doctors can look over and utilize we thought would be helpful,” said Carolyn Vachani, RN, MSN, AOCN, OncoLink Nurse Educator, who had presented the idea for the plan last summer. She worked to develop the plan with Maggie Hampshire, RN, BSN, OCN, Managing Editor of OncoLink; Dr. Metz; and other nurses and physicians from the University of Pennsylvania. Ms. Vachani added, “It's also a good resource for primary care physicians who are caring for cancer survivors without knowing necessarily what all the long-term complications could be for these patients.” Prescription for Living The Cancer Survivor's Prescription for Living, which is geared towards nurses, is a two-page form that was printed in the American Journal of Nursing (2007;107:58–70). The first page provides space to detail the history of cancer treatment, as well as significant events that occurred during treatment and other active health problems. On the second page is the follow-up plan, which includes cancer evaluation, symptoms to report, and a plan to address persistent physical and psychosocial effects and possible late effects. There are also check boxes on wellness measures and a spot to indicate frequency of various cancer screening tests. The idea to develop the plan evolved during two meetings convened by the American Journal of Nursing (which is published by the same company as OT, Wolters Kluwer Health/Lippincott Williams & Wilkins) over the past couple of years, the first in collaboration with the American Cancer Society, the National Coalition for Cancer Survivorship, and the University of Pennsylvania School of Nursing and the second with ACS, the Oncology Nursing Society, and NCCS. “The important piece was that it wasn't just the oncology community,” said Pamela J. Haylock, MA, RN, lead author on the Prescription for Living tool and an oncology consultant and doctoral student at the University of Texas Medical Branch School of Nursing, referring to the participants in the second meeting. “After treatment a lot of cancer survivors end up going back to general practitioners or internists, sometimes nurse practitioners, and those kinds of settings for their follow-up care rather than staying with an oncology specialist provider. We think it's absolutely critical that people outside of the oncology community are aware of the needs of survivors and resources and the expectations of survivors.” ASCO Treatment Plan & Summary The American Society for Clinical Oncology's Colon Cancer Treatment Plan is a two-page document that can be accessed on the society's Web site, www.asco.org. It includes space to fill in background information, such as the disease site in the colon, family history, and surgery type; the plan for adjuvant treatment; and the adjuvant chemotherapy treatment actually received. The survivorship care coordination and plan includes symptoms that should be evaluated by a physician, special precautions, timing of particular aspects of follow-up care, and provider contact information. “The ASCO treatment plan/treatment summary is very spare in that it's two sides of a page with the idea that at minimum these were the things that needed to be there, but many of us who are actually doing treatment summaries and treatment care plans are having them be more elaborate, so this is just kind of the bare bones,” said Patricia Ganz, MD, Director of the Division of Cancer Prevention and Control Research at UCLA's Jonsson Comprehensive Cancer Center, who was involved with the plan's development. Early this year was set as the goal for finishing the plan so it could be used for the evaluation of oncology-specific health record vendors. At ASCO's Annual Meeting, vendors demonstrated how they could pull the treatment plan and summary out of the electronic record. Using colon cancer as an example, Dr. Ganz explained how an electronic health record could facilitate the more regular use of care plans, though she noted that current use of these records is low. “The ideal effort would be when you first saw the patient you said they had Stage 3 colon cancer and put in all that information; for your treatment summary it would just pull that out of the record. You wouldn't have to do anything.” A template for breast cancer treatment, which was being piloted last month, includes the ASCO 2006 Update of the Breast Cancer Follow-up and Management Guideline in the Adjuvant Setting. “You'll see it's a little bit more elaborate in terms of the survivorship care planning piece,” Dr. Ganz said.