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Introduction

This report of the proceedings of a symposium held in conjunction with the release of the IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition, represents an effort on the part of the American Society of Clinical Oncology (ASCO), the National Coalition for Cancer Survivorship (NCCS), and the Institute of Medicine (IOM) to further disseminate the findings and recommendations of the IOM report and to take the next step toward implementation of those recommendations. The symposium and this report serve as important vehicles to raise awareness, fill gaps that have existed in cancer patients’ long-term care, and chart a course for quality care for cancer survivors and their families. More than 100 stakeholders in the cancer community, including survivors, advocates, healthcare providers, government officials, insurers and payers, and researchers participated in the symposium.

This report culminates a series of work at the IOM focused on cancer survivorship. The idea to embark on a major study of cancer survivorship within the National Academies originated with the National Cancer Policy Board (NCPB). The NCPB was established in 1997 in the IOM and the National Research Council’s Division of Earth and Life Studies at the request of the National Cancer Institute (NCI), the National Institutes of Health, and the President’s Cancer Panel. The NCPB identified emerging policy issues in the nation’s effort to combat cancer, and prepared reports that address those issues, including a series of reports on topics ranging from cancer prevention to end-of-life care.

The Board’s first major report, Ensuring Quality Cancer Care (IOM, 1999), recommended strategies to promote evidenced-based, comprehen-



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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium 1 Introduction This report of the proceedings of a symposium held in conjunction with the release of the IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition, represents an effort on the part of the American Society of Clinical Oncology (ASCO), the National Coalition for Cancer Survivorship (NCCS), and the Institute of Medicine (IOM) to further disseminate the findings and recommendations of the IOM report and to take the next step toward implementation of those recommendations. The symposium and this report serve as important vehicles to raise awareness, fill gaps that have existed in cancer patients’ long-term care, and chart a course for quality care for cancer survivors and their families. More than 100 stakeholders in the cancer community, including survivors, advocates, healthcare providers, government officials, insurers and payers, and researchers participated in the symposium. This report culminates a series of work at the IOM focused on cancer survivorship. The idea to embark on a major study of cancer survivorship within the National Academies originated with the National Cancer Policy Board (NCPB). The NCPB was established in 1997 in the IOM and the National Research Council’s Division of Earth and Life Studies at the request of the National Cancer Institute (NCI), the National Institutes of Health, and the President’s Cancer Panel. The NCPB identified emerging policy issues in the nation’s effort to combat cancer, and prepared reports that address those issues, including a series of reports on topics ranging from cancer prevention to end-of-life care. The Board’s first major report, Ensuring Quality Cancer Care (IOM, 1999), recommended strategies to promote evidenced-based, comprehen-

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium sive, compassionate, and coordinated care throughout the cancer care trajectory, but its focus was on primary treatment and it did not directly address the quality of care for cancer survivors. However, it noted that such issues needed attention. This report, then, is part of a Board initiative to address quality concerns for cancer survivors with an emphasis on what happens following the primary treatment of cancer. The Board report, Improving Palliative Care for Cancer (IOM, 2001), addressed the need for quality care at the end of life for those who die from cancer. The NCPB decided to separate its exploration of cancer survivorship into three reports. The first report examined childhood cancer survivorship (IOM, 2003a). Some policy issues are common to both children and adults who have survived cancer (e.g., insurance and employment concerns); however, unique features of pediatric treatment and healthcare delivery systems led to the decision to pursue childhood and adult cancer survivorship issues independently. The second report addressed one particular aspect of survivorship, focusing on psychosocial needs of survivors, using female breast cancer as the best studied example (IOM, 2004). The third report, From Cancer Patient to Cancer Survivor: Lost in Transition, is intended as a comprehensive look at the current status and future requirements of the large and growing cohort of adult survivors. The symposium reported here seeks to describe and disseminate the content and recommendations of this last report. Furthermore, this sequence has not yet come to an end. A follow-up workshop is being planned to review next steps to implementing survivorship care planning. The committee’s report and this symposium report focuses on adult survivors of cancer during the phase of care that follows primary treatment. In its deliberations, the committee has adopted the definition of cancer survivor used by the NCI’s Office of Cancer Survivorship, “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition” (NCI, 2004). In applying this definition, however, the committee decided to focus its attention on a relatively neglected phase of the cancer care trajectory, the period following first diagnosis and treatment and prior to the development of a recurrence of the initial cancer or death. The committee identified several areas of concern for individuals during this monitoring/surveillance period, for example, the lack of clear evidence on recommended follow-up care and the unique psychosocial needs of cancer survivors following treatment, a time when frequent contact with cancer care providers often abruptly ceases. This particular phase of care has been relatively unexamined. The committee also addressed the needs of those individuals with cancer living with disease on an intermittent or chronic basis. Given prior work of the IOM on palliative care (IOM, 2001)

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium and care at the end of life (IOM, 1997, 2003b), the committee decided to exclude these broad areas from their consideration for the purposes of this report. ASCO’s co-sponsorship of this symposium is significant. ASCO is the leading professional organization representing physicians of all oncology subspecialties who care for people with cancer. ASCO’s more than 20,000 members from the United States and abroad set the standard for patient care worldwide and advocate for more effective cancer treatments, increased funding for clinical and translational research, and, ultimately, cures for the many different types of cancer that strike an estimated 11 million people worldwide each year. In addition to co-hosting the symposium, ASCO has undertaken a range of other activities to move the IOM recommendations forward under the direction of ASCO’s Survivorship Task Force, formed in December 2004 and co-chaired by Drs. Horning and Ganz. ASCO’s newly convened Survivorship Expert Panel is developing new evidence-based guidelines on the long-term medical care of adult cancer survivors. The overall purpose of the guidelines is to provide health professionals with the knowledge and expertise to decrease morbidity and to improve quality of life for adult survivors of cancer. The panel will draft guidelines in the following areas: cardiovascular disease; hormone replacement therapy; osteoporosis; sexual dysfunction; second malignancies; neurocognitive dysfunction; and psychosocial distress. In response to the IOM’s call for public/private partnerships to monitor and improve the care that survivors receive, ASCO and NCCS are co-chairing the new Cancer Quality Alliance, a forum for diverse stakeholders in the cancer community who will work to improve the quality of the cancer care delivery system. Through this partnership, ASCO, NCCS, and the other members will work to establish integrated treatment systems to ensure all people with cancer receive the best care possible. ASCO also will provide educational opportunities to healthcare providers on survivorship through sessions in a new “Patient and Survivor Care” track at its annual meeting in June 2006. One session in this expanded track will focus on how to write a “Survivorship Care Plan,” which will highlight the IOM recommendations for outlining a follow-up care plan. Topics addressed in other sessions will include developing cancer survivorship programs; minimizing long-term consequences of breast cancer therapy; nutrition issues for survivors; and survivorship issues in genitourinary malignancies, among other sessions. The one-day symposium reported here was designed by members of ASCO’s Survivorship Task Force, members of the IOM’s committee and staff, and the leadership of the NCCS. The morning of the symposium featured an overview plenary session introduced by ASCO President, Sandra Horning and IOM member Fitzhugh Mullan, with presentations from IOM

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium committee members who highlighted the report’s main findings and recommendations. This was followed by a series of six breakout sessions to allow for short focused presentations and discussions on the implementation of the report’s recommendations. A brief wrap-up session at the end of the day allowed rapporteurs of the group discussions to summarize the information and recommendations presented during those sessions. The agenda identifying the speakers and their affiliations can be found in Appendix A. The speakers in each breakout session were assembled from different governmental, academic, and private-sector organizations to provide a wide range of perspectives. The participants in discussions, questions, and answers are also reported. All the presentations and discussions were edited for easier reading and to add graphic material in the form of figures from PowerPoint presentations used during each speaker’s presentation. This dissemination report contains only what was said and displayed at the symposium. It is, therefore, a less formal forum than a committee or IOM report. Much interesting information, analysis, and provocative ideas and suggestions can emerge during such an event from the experts, officials, and opinion leaders assembled. The ASCO and IOM hope that this record of the day will provide continuing food for thought and ideas for actions in support of cancer survivorship in the years to come. Maria Hewitt and Patricia A. Ganz