Cancer Quality Alliance Proceedings Passport for Care: Implementing the Survivorship Care Plan By Marc E. Horowitz, MD, Michael Fordis, MD, Susan Krause, Julie McKellar, and David G. Poplack, MD Texas Children’s Cancer Center; and Center for Collaborative and Interactive Technologies, Baylor College of Medicine, Houston, TX The Need In their report, From Cancer Patient to Cancer Survivor: Lost in Transition, 1 the Institute of Medicine and National Research Council recommend that a patient completing primary treat- ment for cancer be given a summary of treatment and a com- prehensive plan for follow-up. In addition, it is suggested that this survivorship care plan be provided to the patient’s primary care provider. Such a plan would inform the patient (and health care provider) of the long-term effects of cancer and its treat- ment, identify psychosocial support resources in the commu- nity, and provide guidance on follow-up care, prevention, and health maintenance. 2 This recommendation emanates from the recognition that as a consequence of success in cancer therapy, there are approximately 12 million survivors of cancer in the United States. Many of these survivors suffer long-term health sequelae of their illness and its treatment. The Passport for Care (PFC) was developed to be the childhood cancer survivor’s signpost, guiding the survivor and health care provider through this challenging and ever-changing world. The need for survivorship care plans is particularly relevant in the population of survivors of childhood cancer. Each year, approximately 12,000 children in the United States are diag- nosed with cancer. As a result of recent research advances, ap- proximately 75% of these patients become long-term survivors. In fact, experts estimate that by the year 2010, one in every 250 adults will be a survivor of childhood cancer. However, survi- vorship is not without risk. The Childhood Cancer Survivor Study of 10,397 survivors found that 62.3% had at least one chronic medical condition, and 25.7% had a severe or life- threatening condition. 3 The report of the 2003 and 2004 Pres- ident’s Cancer Panel states that “for the nearly 10 million Americans now living with a cancer history, life after cancer means finding a new balance— one that celebrates the triumph and relief of completing treatment, recognizes changes or losses the disease has wrought, and assimilates revised perspectives, newfound strengths, and lingering uncertainties. Typically, few signposts exist to guide these highly personal journeys into a familiar but forever changed world.” 4 PFC Features The PFC is an Internet-based tool developed to provide survi- vors of childhood cancer and their health care providers with the individualized, accurate, and timely health care information necessary to maximize their health potential. Figure 1 offers a glimpse of the design and resources of the PFC. The PFC pro- vides long-term survivors and their health care providers with summaries of the survivors’ cancer history and treatment, dis- played in a user-friendly format. This information drives algorithms to produce individualized monitoring and management recommendations derived from the Children’s Oncology Group (COG) long-term follow-up guidelines (www.survivorshipguidelines.org). These guidelines represent expert consensus regarding the evidence for screening recommendations for all of the 146 known potential late effects of childhood cancer and its treatment formulated by more than 20 expert task forces of the COG. The PFC displays these recommendations in user-friendly outputs. For example, the health care provider is provided with all of the information necessary to evaluate the survivor, including the appropriate questions to ask when taking the history, the specific findings to search for in physical examination, and the appropriate labora- tory and diagnostic tests to order. These outputs are individu- alized for each survivor on the basis of his or her unique treatment history. Another view of the information gives the health care provider a quick summary of all of the recom- mended tests. The levels of expert consensus for each recom- mendation as well as the pertinent medical references are made available through links and rollovers. The initial PFC version is specifically designed for use by the survivor’s health care provider. A survivor Web portal under development will give each survivor the ability to control the sharing of his or her information as well as access to social networking features including disease-specific survivor chat rooms and survivor stories. Additional features under devel- opment include information resources for the survivor indi- vidualized on the basis of his or her zip code and specific needs, such as health insurance information, prosthetic shops, and support groups. The confidentiality and privacy of information in the PFC is protected using security methodologies compat- ible with the requirements of the Health Insurance Portability and Accountability Act and the highest levels of Internet secu- rity procedures. Special Series 110 J OURNAL OF O NCOLOGY P RACTICE • V OL . 5, I SSUE 3 Copyright © 2009 by American Society of Clinical Oncology Downloaded from jop.ascopubs.org on March 16, 2016. For personal use only. No other uses without permission. Copyright © 2009 American Society of Clinical Oncology. All rights reserved.